Treating estrogen responsive cancer naturally
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I know it's not easy, I've been trying for a year now and started being successful only in the last month. After being pushed in chemopause, taking AIs for a while and taking anti-thryoid medication made this seem like a losing battle, but slowly slowly I'm getting there. 12 lbs gone 38 more to go.
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12 down, that is great. I was heavy at DX and it seemed like I shrank along with the tumor. I was lucky that way. Now I am trying to stay that way, and hopefully lower my blood sugar in the process.
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Day, I get what you're saying. But I have read on other threads and elsewhere about the pre and post menopause issue and how one is walking a very fine line when trying to determine menopausal status. Unless, of course, you're 70 + or so. Even oncs won't take a chance with women in the 50-60 range. Are they playing safe, surely.
Weight is not an issue for me, my BMI is within normal range. However, I was strongly ER pos, so, something was/is driving my estrogen.
No doubt, there's a ton of research in favour of melatonin for breast cancer. I guess at this point, I'm just listening to my gut. Because melatonin has not resolved my sleep issue, I'm therefore reluctant to use it as a preventative for BC because of its strong estrogenic potential. There's also pro-soy research out there for ER+ BC which at this time I'm not blindly willing to acknowledge.
Like I said above, we have to determine for ourselves how much risk we are willing to take and that goes for natural as well as conventional therapies. As far as I'm concerned, I took a huge risk going conventional and have to live with its consequences. Call me Prudence.....
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Try plain Greek yogurt both topically and by ingesting for your UTI. Sounds weird, but it helps.
It took me about 3-6 months to get back to normal after the AI's. Some things were better within days, some a few weeks/months, and 1 or 2 look like they may be permanant. Sleep was definately better after a short time. The joint pain took a little longer. The vision issues are here to stay I think, although over alll my eyes are healthy. It just worsened my vision.
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Everybody says don't take sleeping pills. If Melatonin is bad for estogren positive cancer what can I take? I have been taking Arimidex for a month and half. My surgery was in November and Radiation in December (internal). I have only seen my oncologist once and have another appointment in April. I have an unusual auto immune skin problem (dermatomyositis) which can cause fatigue and other issues. I really don't know what doctor I am suppose to talk to about what. I have to have some sleep (I have a crazy stress filled life). I had a chiropractor who was trying to help me with natural supplements but the costs started being too much.
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Claudia, there are a lot of precautionary measures one can take when suffering from insomnia, for example, a fresh dark room, bed before 10, no computer/TV/alcohol/exercise, eating carbs and protein like a banana and milk right before bed, and the list goes on, but I'm sure you've looked into that. Insomnia can have so many causes like hypoglycemia, cortisol surges, anxiety, pain, distress associated with dx, etc. Also, I believe there is a correlation between low estrogen and insomnia
I guess one has to eliminate those causes one at a time to determine what could help. There's also a lot of gadgets like earphones that emit white noise and binaural beats. I find relaxation and meditation music/sounds help me unwind. U-Tube has a great selection. If the supps your chiro gave you were working, you could try a combo as opposed to taking them individually which would be cheaper. Shopping around on the net or at your health food store could be helpful. The most common herbs used for insomnia include valerian root, passionflower, hops (but estrogenic) also 5-HTP, magnesium. You could also turn to homeopathy. But then these will not knock you out like a sleeping pill would...I've had insomnia for as long as I can remember and still to this day I resist taking meds
This study concluded that treatment (radio and chemo) caused insomnia in breast cancer patients, very interesting
www.journalsleep.org/Articles/240509.pdf
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Momine - I found out Monday. My last PT was June 2012.
Melatonin.... all I know is the natural endocrinologist knew I had ER+ PR+ bc at 95% ea and rx-ed melatonin for me, along with the bioidentical progesterone cream. I came to trust all of it. From what I learned from him, the progesterone is also key for the estrogen. In Outsmart Your Cancer and the book he gave me, it was all explained.
The oncologist's information on the estrogen still circulating at low levels being a concern, that takes me spinning off into more confusion, knowing now though I have already done the footwork to know what I want.
I came here, to this thread for help with it. I was confused, tired, getting ill, have memory problems anyway.
I received that help though and much more from those who wanted to give info on UTIs. The Greek yogurt I am eating too. Am 95% improved from the worst of it. What a roll.
Purple, the decision to not take on conventional tx, we are the same. I have done more alternative I think, but only surgery otherwise.
I still do not understand why you prod me to consider the oncologist and the drug? And to say to me that I protest too much? When I came for clarity and assistance? I think you have been very rude for no reason.
I am tired. Here, I am done. No further comments. Unless I forget that I removed this thread, which is highly likely.
Please, all who were so helpful, don't take this personally.
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Bluebird, forgive me for being so confused all the time, but are you saying that your last PET was in June and you only got the results this past Monday?
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Bluebird - i hope you dont leave - i really enjoy your posts........
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Yogurt is good for yeast infection, not for UTI. One is a mycosis (fungal infection that is sensitive to the probiotics in the yogurt), the other one is bacterial and those types of bacterias couldn't care less about yogurt. Yeast infection happens in the vagina, UTI in the urinary tract. Two different systems. As for "topical" I very much doubt anyone would be willing to pump yogurt up their urethra.
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sleepytime extra tea by celestial seasonings puts me right out.
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I think you have been very rude for no reason.
I am very sorry if you thought I was being rude. The words Consider what your ONC says is not rude to me.You must remember that we are not speaking on the phone or talking face to face.
When you ask for opinions you will not always get the ones you want. Simply toss them!
As for the protesting too much , it really SEEMS you are conflicted...which is precisely why I was urging you just to consider your oncs suggestions.
Pls feel free to PM me if you want to 'discuss' further. I can assure you I did not intend to be rude and I do apologize for coming off that way.
We have enough crap to deal with.0 -
Oh yes, Celestial seasonings is a great one. Another good "sleeper" is a combination of linden blossom and anise seed. Just go lightly on anise seed (not more than 1/3 of the mix) as if it's too much it can cause hallucinations. You can throw in the mix some camomile too.
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You're right, I was thinking bladder or yeast infecton. My bad.
I just heard that blue blocking/orange lens galsses for an hour before bedtime help insominia as well. I've found some for under $20. I'm going to give it a try. Can't hurt and might help.
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also, subdued blue light and a satchel of lavender under your pillow.
TBH, when I was having severe insomnia due to hyper-thyroidism (AND the treatment for it) I would often get relief with... sound. I had downloaded online lots of "sounds of nature" with rain and thunderstorms and made a CD out of it. I would put it on, at a decent volume (not really loud, that is) on repeat, and sooner or later I'd fall asleep.
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There is a CD by Andrew Weil called Sound Body Sound Mind. It works on your brain waves and gradually slows them down. Its about an hour long and it puts me to sleep every time. I don't think I've ever heard the middle part that puts your brain into a deep sleep. The problem is it gradually brings you back out of it and you wake up.
Something else to try is to soal your feet in really hot water before bed. I think I read this in Vermont Folk Medicine.
If I can't sleep I use a mask that blocks out the light. I like to have the tv on but I know its important to be in darkness so I put on my mask and listen to tv. If I'm staying somewhere that I'm not alone I use earplugs. I bought a supply of 200. They save my life when I'm in the car with my sisters family. I call them The Louds. They never stop bickering and tormenting each other until they go to sleep. Then they snore.0 -
Essa, I really really hope you don't leave. :-(
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I have a question that may sound a little strange. I have been taking Arimidex. I went to a basketball game the other day with my husband an another couple. We stopped to get something to eat. Because it was Valentine Day we had to go early. We ate and I had 2 beers (over a two hour period). I am not much of a drinker, but we have a nice place here that brews its own beers. I started getting sick while I was eating and by the time we got to the game I was really sick and we had to leave. It lasted into the next day. Is there any chance that Arimidex could have caused a problem?
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Well it does say that while using arimidex it is better not to use alcohol.
Mena
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Well, what kind of sick? As in nausea/vomiting sick or upset stomach sick? And are you on any other medication?
Anyway, freshly brewed beer when it's very fresh or when it's a little too old CAN upset your stomach (as in giving you the runs) due to the yeast content. So it is very possible it was just the beer, not-related to Arimidex.
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I had some digestive issues the first two weeks on Aromasin......I was not drinking at the time......but I think it could have played in to it.
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Claudia....just want to jump in here.....although I'm on Letrozole not Aromasin ....from time to time I am nauseous and bring up and I haven't had a glass of wine since Christmas. It always happens after dinner especially...for example....my son made a beautiful dinner last night and I don't know if it was because I was hungry and ate it too fast, but after I felt nauseous and I brought up about a quarter of my meal. One of the SE
of Letrozole can be nausea so check for Aromasin....hope it was a one of for you.0 -
I've been on all three, but honestly only Letrozole gave me nausea from time to time. But different people can have different reactions, and also don't disregard the fillers. When I was on Arimidex the first time, the fillers in that specific brand was making me get high blood pressure.
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I wasn't feeling good earlier in the week so I am not sure didn't have some kind of bug (stomach wasn't feeling good and didn't want to eat). The sick I got after drinking the beer was throwing up. I really have a hard time throwing up, but when I do I can't hardly stop. Yesterday wasn't too good but I did stop throwing up. I have not been that sick in a long time from drinking alcohol. Everybody has done that at least once in their life. My stomach hurt so bad that at one point my husband asked me if I wanted to go to emergency room. It could have just been a combination of things (some type of bug and the beer not sitting on my stomach the right way). Not sure but I am not going to do that again for a long time.
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Day, yeah....what's with the nausea and Letrozole....it seems to come and go. I can go weeks and feel nothing and then a few weeks of feeling squeamish where I have to be careful what I eat.
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OK, Purple, I will unruffle my blue feathers. Telling me I was protesting too much was the rude part in my perception ---- sure, I'll take conflicted instead because when he said that about the blood, I was spinning, and "conflicted" would have been a better choice of words for a spinning sister and a felt like a gentler hand. Mostly, it was my mistake in this way.... I was so upset bcz I have been contributing to this thread and using it for support since pg 3... my choices to go naturally in most ways and my memory struggles are no secret. BUT, in my apparent crappy memory / confusion, I thought you were the author of this thread so I left more of respect to that than anything. But, doing research for more info (on Letrozole, LOL, of all things right here too on this page) I see you aren't. In 5 min, likely that I will not remember who is who and have to look again. That is why writing is best for me but still not accurate.
So, you're right, let's be fine. You are so right, we have enough crap to deal with. Today the cancer is very active, I can feel it throughout, like a really subtle flu.
I am sure you have days too, weeks, especially trying to bridge the alternatives with so many contraindications and a mountain of contradictions everytime you think you find an answer. I feel for you.
To all, I'm sorry, I hate stirring things. I do belong here. With 95% ER+ PR+, this has been a go-to thread for me.
Thanks for the info on the Letrozole. I suppose if that is all I had w no lingering SEs, I could handle some nausea from time to time, am having it today and not on anything. Someone somewhere said this Letrozole was suggested by their holistic doctor, so I am considering it before the other. MAYBE?? it is creating the nausea at peak estrogen times, like when more hormones are created for some reason? I have no clue how this stuff works yet. Moreso, I am considering the alternatives and knuckling down on my protocol more because I am sloppy. I have four cans of organic black beans and did not open one for months! I'm bad.
My oncologist had suggested a new? newer? one, Afinitor, but I found on bco those who were experiencing inflamed lungs and w my respiratory being my weakest point all my life, not good at all. Has anyone tried anything from an onc that is considered more natural than others? Like Afinitor and the L one?
Momine dear, you and me, same same wild boat. *_* Confused I wonder how much of this and temperament issues that I am having is from the extremely low estrogen?
Does anyone want to admit to being a basket case at times and think it could be the low estrogen? I have no idea because I have to look it up yet again.
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Telling me I was protesting too much was the rude part in my perception ---- sure, I'll take conflicted instead because when he said that about the blood, I was spinning, and "conflicted" would have been a better choice of words for a spinning sister and a felt like a gentler hand....
Bluebird
I would like to apologize again. I maintain that I meant no harm, but you are right- I could have used kinder, gentler words.
And I will be the first to admit - I am a basket case at times.
Namaste!
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HLB - how do you think it would work for someone to turn off the CD in the mid to late section? Let you sleep? Turn it back on when you choose to awake?
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Well if you could copy the cd to only a certain point so that it wouldn't wake you up, that might work. I just have always enjoyed that cd. Its meant to help you mind stop constantly thinking so that you can heal.
I am taking the letrozole with no side effects at all for 6 months now, and my tm went from 116 to 33 in that time, so you never know, maybe its worth a try? I worry about it but I would be more worried if I didn't take it I think. Once I had a blood test after 2 months of taking it I was so much more relaxed and not so panicked and terrified of this cancer. I just try to do all the other natural things too and hopefully that is also helping the cancer and hopeefully helping with the side effects. Mine is made by Sunpharma.0 -
Maybe ths is a dumb question but is there no such thing as a filler that doesn't have SE's?? Why do they have to put garbagE in our effing medicine?!!
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Depending on your computer, you can stream some music that will just play over and over.
I will jump on the confusion wagon. Another thing I've noticed, and attribute to the meds, is that my way of thinking has changed. It sounds weird but I have become a very literal thinker. I wish I could think of an example, but of course, right now when I need it, I can't. It's like I don't catch the subtleties, which is odd because I've always been a very abstract thinker.
The fillers can make a huge difference. I had to change one of my scripts because the pharmacy changed the brand they use. I get the same script, but it's a different brand.
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Scottiee, I know, right? And you walk for half a day with that queasy feeling and nothing really settles right in your stomach. And when you go to bed you think "Oh gosh, I sure hope it's not liver mets."
PTSD all the way.
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Bluebird, I am still confused
You had the PET in June, and you only got results last week or did I read wrong?Letrozole can be very effective in keeping mets down, and the SEs are not always all that bad.
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Day. Apart from ginger, is there anything else I can take for nausea??? I sometimes
take a gravol suppository but I would prefer something natural. Can I get ginger
supplements to just keep in my bag for emergencies?? I prefer of course natural ginger
but that's not always convenient as it sometimes comes on while I'm at work. Thanks Day...I know you will give me good feedback ❤0 -
Did you try making candied ginger, scottiee? Here's a recipe: http://www.davidlebovitz.com/2008/12/candied-ginger/ You could put in a candy jar and take it with you at work. I don't think ginger supplements would work, as it's the taste and smell of ginger that inhibit nausea, not the properties.
You can try mint tea if you can make tea at work. Also, lemons can work on nausea as well.
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carry some sugarless mints in your pocket and sugarless spearmint gum in a pinch too.
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Bluebird Essa, some great tips here for UTIs
naturalhealingtipsblog.com/2012/07/herbal-remedies-that-kill-bacteria.html
Hope this helps even if I'm a bit late, here's hoping it's now gone
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Day....thank you for the recipe.
Purple ....sugarless gum and mints ???.....can I get the natural ones without aspartame
and all the other crap they put in????0 -
can I get the natural ones without aspartame...
Even better!
My grandfather used to swear by peppermint and spearmint to avoid nausea . He was a pretty wise old man !0 -
You can also get stevia-sweetened mint chewing gum
http://www.steviasmart.com/new-products.html
Or candy but I'm not sure if it's also mint
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papaya enzyme is great for naucea too. Its a digestive aid.
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Thank you ladies.....will try all....❤
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Be careful with the peppermint. A little can settle the stomach, but too much can aggravate it. A peppermint stick in some green tea can be easier on the stomach than straight peppermint. Ginger teas work well for me too. Hope you feel better soon.
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Mini1.....thank you ....will keep you updated.
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Welcome CCFW. I have lots of gastro issues too. Diet is key I have found. I take DIM, mushrooms, resvertrol and Vit D and haven't had any problems.
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What is the best DIM to buy. Several I have found have soy in them. I watched a doctor on Dr. Oz's show that said to make sure it had black pepper in it for better absorption.
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I am happy most people do well with DIM. DIM gave me horrible, horrible migraines. I had to stop
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Can anyone give me the name of a good DIM without Soy?
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Vitacost.com carries one that is their brand - no soy.
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Thanks
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http://www.vitacost.com/natures-way-dim-plus-120-capsules
Remember you are supposed to take around 200-300 mg daily at least for it to be effective so count for two of those pills a day. This is the one I'm buying.
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I take the same DIM as Day. I had to go to a liquid diet at one point and work my way back to normal eating from there. Just remember that it can take 6mo to a year for your stomach to completely heal. You won't feel bad that long, but the healing process is still going on, so you still need to be careful with your eating, even after you start to feel better. I got a lot of my nutrition in smoothies, green drinks, and organic sweet potato soup. Ginger and pepperment teas helped as well. No soda of any kind. In fact, no carbonated beverages period. Hang in there. It will get better.
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CCFW - I had the same or at least similar problem my first month on femara. i didn't think I was going to be able to take it and took me while, a month or more to get used to taking it . It seemed so hard on me at the beginning. I now take probiotics everyday, my doc told me when I first had the problem to be sure to buy some w/ the sacchromyces cervisae in it (also called beta glucan). He also told me to buy some psyillium husks for fiber to take daily. I've done this and far better now. I've also taken some serious measures to keep everything flowing, whether its eating raw food, taking enzymes, doing enemas, drinking herbal teas, eating a bunch of fruit.. it's just do whatever it takes. I'm a true believer in fiber now, I know that.
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That's interesting about the beta glucan because that is what's in the maitake d fractuion extract that I take. Supposed to help with cancer. I know the feeling of doing drastic things to keep things moving. It got to the point where I think I went off the deep end a little bit with anxiety compounding the problem because I was so worried about having to go to the ED to be disimpacted or have surgery for obstruction or something. I think what works is different for all of us and we just have to figure out what works best.
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I get my psyllium husks from here. And other things as well (they really have low-carb no gluten stuff to bake with). Might want to give it a try.
http://www4.netrition.com/now_psyllium_page.html
As for my recipe of (very) low-carb bread
Oat fiber (bought from said website) about 3 cups.
1 cup of psyllium husks
2 eggs (separated)
about half a cup of extra virgin olive oil
a tbsp of baking soda
a tbsp of apple cider vinegar
Water - this is without measure, just add until that oat fiber swells enough. Usually from three cups of oat fiber I make enough dough to fill a big loaf pan. Just add 2 cups of water in the beginning and the olive oil, then keep adding water until it swells to that bulk. Add the yolks too, the vinegar, baking soda and a pinch of salt.
Now, VERY important. Whip the whites stiff. Fold into the rest of the dough. If you don't do that, you will spend about 5 hours of baking at 400F and the loaf will still be raw in the middle - the oat fiber is THAT sticky. And you can't tell until you slice, the toothpick checking trick doesnt' work on oat fiber, the toothpick will be clean even with raw middle.
IF you didn't do it well enough and it will still be slightly raw in the middle, do not despair. Slice it, grease a cookie sheet with butter, put the slices on, bake for about 40 minutes at 400F. Trust me, they will NOT get dry.
Keep in a tuppelware with a good closing lid.
Goes for about 59 cal, 0.5 carbs, 9 grams of fiber per slice. That is enough fiber to help your constipation, just make sure you drink LOTS of water.
Not to mention it's deeeeelicious. Even just plain with a cup of tea.
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I thought this might be of interest to post here in this thread. I was recently diagnosed with DCIS and am being treated at Yale. I joined a clinical study on the effects of black cohosh (an herb I think?) on early stage BC and took it for three weeks prior to my lumpectomy which I had on 2/21. I have not heard the results yet, but the hypothesis is that black cohosh has properties that may be beneficial in shrinking early stage BC lesions. They took some blood before my surgery to see if my Ki67 (I think that is what it is) is different than before taking the black cohosh. Here is the link to the study I participated in. http://clinicaltrials.gov/show/NCT01628536
Since it is sold over the counter and women have been using this for a long time to stop hot flashes during menopause, I figured it was safe and I tolerated it well. Any thoughts? Comments? I am not sure if it did anything at all but I figured it was a safe study to join even though black cohosh has also been shown to INCREASE estrogen. Scary thought since I am highly ER+ (>95%) according to my pathology report after biopsy.
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Well it might well shrink the tumors that are NOT estrogen-positive - but definitely after the tumor isn't there anymore, there wouldnt' be a reason to take a herb that actually increases estrogen, now would it?
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I've heard of black cohash being used for limited time for hot flashes and sleep, but not BC. Since there are conflicting reports on its effect on estrogen, I've not contemplated adding it to my regime. Regardless of what you use it for, everything I've found says it should be taken only for a limited time.
Will they let you know the test results? I know most studies never let the participants know. My husband was in one years ago. We never knew the result until about 7 years later when we read that his treatment regimine in the study so successful that it was now the standard treatment.
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My MO said by me taking black cohosh for 6 years for hot flashes, it is possible that my cancer spread because of it..Wow, who would have thought. Now he says no Soy, or Black Cohosh..Very ER+.
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Good question Mini. I am not sure of the answer to that. I will try to find out if any changes were noted when I go to my post op appt as the APRN who monitored my study and gave me the black cohosh said she would see me that day too. I think they might actually tell me what if any changes were noted from this. I am doubtful they will find anything significant. But, I tolerated it fine and I am no longer taking it. Just thought it might be interesting to post about it here since it is a somewhat benign herb and it may actually be found to be beneficial in shrinking BC. I will let you know if they tell me anything. Should be interesting either way. Despite being ER+, I was assured that taking it for the short time would not affect that one way or another.
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So my ND only suggested DIM in addition to what Im already taking. She said only up to 500mgs as more than that could be toxic according to the studies she has read - she suggested 300mg. She also suggested UNDA numbers, which I am still researching on as they are expensive, the help with detoxing and for immune system. I forgot she isnt big on taking supplements, and puts more emphasis on eating right, more cruciferious veggies etc.
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I take 300mg of the DIM.
I'm too the point that I think pretty much everythng we eat, drink, digest, wash with, wear, etc. causes our cance to spread. Pesticides in our food before it's even planted, people wearing haz-mat suits to spray pesticides to our berries, parabens in our make-up, arsenic in our water and rice, etc. Some supplements may have side effects, but not as many as most Rx or OTC drugs. Just listen to that soft little voice over at the end of the commercials telling you all the SE's, many of which have CANCER as a SE. Thanks, but I'll keep the disease I have instead of adding another one.
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So true! Right now I have very high undiagnosed blood pressure along with extreme dizziness, rapid heart rate, shivering, etc. Cardio just started me on new BP meds, wearing a 24 hr monitor. Very anxious and scared. BP has been going from 140/70 to 204/111---nobody knows why, waiting on bloodwork---
This scares me much more than the cancer coming back---I'm not the type to have anxiety attacks, but I sure had one this morning--
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Glad you are having it checked out!! I didnt have the high bp and dizziness, but just having the rapid heart rate scared the crap outta me!
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My brother had "white coat syndrome." Every time he went to the doctor his BP was sky high. They put him on BP meds and they made him sick as a dog. Finally, they had my mom (an RN) monitor his pressure for 2 weeks with no meds and he was fine. Back to the doctor and sky high again. Come to find out he was deathly scared of doctors and hospitals and never told anyone. I have the opposite problem. My pressure will sometimes be 80 over 50. Except once when I had to fire someone and it went to 146 over 94 its always been on the low side.
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Yes, that can happen and does, to me too. But this came on suddenly. I'm playing a scrabble game on the computer and suddenly my heart beat got really slow, with long pauses between beats and I also got really lightheaded. Thought I would check my BP and it was almost to 200!Scared me to death. I had been on a new medication for the past few weeks, so maybe that was it? Was given a new medication, but it went even higher today though---waiting for blood test results - they don't think it is a heart problem ---I haven't been unusually anxious either ---it is a complete mystery!
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I went to my regular doctor about my heart palps because the nurse at the ONcs office wrote them off as anxiety. He had me do an ekg.....normal, and it showed my heart beats a little slower than normal. My bp has always been super super low......which is fine, unless you are planning surgery....
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When I tried Arimidex my blood pressure skyrocketed (I'm also a low blood pressure persona nd having it at 150 scared me). It was the fillers in the pill. So make sure there's not fillers in something. Also, when my thyroid was VERY hyper, I had rapid heart rate, it was thyroid-induced sinus tachycardia.
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dogs
I have had to wear the monitor before for <very> low BP with associated tachycardia. The fast heart is very scary.
I hope your test helps them determine the cause and puts you at ease.
Take Care!
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Thanks everyone for your replies. This afternoon the Bp went down to 141/76 so that was a relief. Trying to stay calm! I may need an anti-anxiety pill, but hate to get used to something like that, but if it helps my BP maybe it is worth it.
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I have been taking Arimidex for two months now. I have had back trouble before I started taking it. My back has started hurting a lot and I go to a chiropractor. He had me in pretty good shape before I started on the med. Would message therapy help if this is a SE of the med?
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I would suggest turmeric and boswellia for pain related to AIs. I don't know about massage but I would not think it would hurt. Someone mentioned using magnesium oil for massage and really helped her a lot! As well as taking mag supplements, 600mg.
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Im a massage therapist - unless it is muscle pain you are feeling, massage isnt going to do much for the bone pain you are feeling. Tumeric is on the estrogenic list of things to avoid if you want to keep estrogen levels.
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I have slight scoliosis and my discs are degenerating. So back issues are a problem for me. The muscles around the middle of my back start hurting when I am on my feet too long or if I am working on filing (do bookkeeping). I really don't know what causes them to start hurting. I am doing some stretching (over an exercise ball) but lately it doesn't seem to be doing much. I hate to take more meds, but would a muscle relaxer help?
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IF you decide on massage, please be sure to tell the massage therapist you are at risk for lymphedema. You need to be careful about that. ( Check the LE thread for good info)
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Hi ladies
My lumpx complete, beginning rads, but I do not want to take Al. Looking for info on how to proceed using organic natural means. I'm active and do not like the list of SEs. I want to take control of my life back. Will use the cancer math and see how it goes.
Keep the info coming will see how I can meld naturopathic & MO.
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Hi all.....yes I'm the one with back issues too and I upped my Mg 600 and my Vit D3 to 6000 IU and also have a Mg spray which I use as a deodorant (fabulous) and I take my Mg spray when I go for a back massage. It has made quite a difference.
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I thought tumeric was considered helpful for breast cancer.
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Me too?????
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As far as I know, turmeric is fine for BC, including ER+ BC: http://foodforbreastcancer.com/foods/turmeric
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This past weekend, I ordered the book, "The Anti-Estrogenic Diet." It just arrived today. As I'm perusing it, I came across the following......for what it's worth:
"Turmeric is a spice commonly used in Middle Eastern, Mediterranean and Indian foods. Curcumin, the active ingredient in turmeric (and curry) exhibited multiple suppressive effects on breast carcinoma cells. Studies in India and China revealed that curcumin's anti-cancerous effects are induced by antagonizing both ER+ and ER- cells. Researchers concluded that curcumin isoflavones could also be used to inhibit the estrogenic effects of pesticides and environmental xenoestrogens."
The author goes on to say, "Contrary to oregano, thyme, and turmeric, there are spices that actually promote estrogen, the most notable of which are licorice and hops."
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Claudia - you could try an epsom salt bath for muscle aches.......
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I use turmeric as part of my natural regime and plan on continuing until see evidence not to.
I found accupunture helpful for pain.
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I am on a "basic" alkaline/non acidic diet, good execise too. There is some really great information posted here. Thanks to you all for sharing.
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I have enjoyed reading all the responses and what people are doing for pain. I knew about the Epson salt baths; however, I also have an auto immune condition that effects my skin (Dermatomyositis). I am sure people think I have to be making these things up. Soaking in the water isn't real good for my skin. My skin is so dry and the rash at times is really bad. I am trying to eat better and exercise. Taking one day at a time.
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Hi there,
I don't know if anyone already mentioned this...but Ancient minerals magnesium spray with MSM works great to reduce pain! Also, Ancient minerals bth salts with magnesium and MSM! You can also take MSM protocol in water internally!
I have had so much success with this...getting rid of my heart palps and leg pain/restlessness! Good luck to you!
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Great thread. I have been on Tamox for about 6 mo and I am also using a local bioidentical estriol cream for a few weeks. Estriol aparently has cancer protective effects and its only released locally.
I am starting to research what natural options I have to tamoxifen and I plan on seeing a dr at the Tahoma clinic in Washington. They have experience with women who went off or refused tamoxifen. Has anyone been to the Tahoma clinic ?
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joelle
Love your signature - I come from the Dr Seuss city!
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Claudia, I have severe scoliosis, some degeneration of the vertebrae and a slipped disk.
The best medicine is regular weight training as well as walking. The stronger your muscles are the less stress you put on the weak parts of the spine. By weights, I do not mean anything extreme. For the last year, I have been doing about 30 minutes of light weights 3X a week and it had helped a lot. I also walk 1-2 hours a day.
Lastly, I analyzed my daily doings to identify the things that especially made my back hurt and now I do my best to avoid them. Standing a long time is one for me too. So if I am cooking, I will sit down to peel veggies, for example, so I am not standing the whole time. Other times I will walk around a bit in between tasks to break the constant standing.
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My life is so crazy. I have a 35 year old son who is married to a women who has an 8 year old son who is biopolar. So happy he has them in his life because he has had 3 back surgeries including one spinal fusion. We have to help a lot with their situation as far as helping with his stepson. With that said, I know I need to exercise more and about the time I get a good start something happens. Excuses, excused! Now that I seem to be doing better after surgery and radiation, I need to get back to doing my stretching. I have slight scoliosis and my psoas muscles are not the same length. This causes a pull on my hips and back. I couldn't stretch over exercise ball for a while. Think I can do it again. I am a bookkeeper and sitting really seems to get my back fired up. Standing is not much better. I am trying to get up and walk a little more while I am working.
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I find when I'm sitting a long time at work I have a tendancy to have my chair scoot back w/o my realizing it. I end up sitting at an angle, leaning forward, and go home with a back ache every time. I've bought a pillow for my chair and pay attention to how I'm sitting more. It's helped a lot.
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Claudia, I know life can get crazy, but if there is one positive for me out of all this cancer crap it is my determination to look out for #1.
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I had a friend who died of cancer and he suffered so much for two years. I realize how short life is and how much I was blessed with the early diagnosis. Things are not always good but I realize how much worse they could be. God is good. One thing I am trying to do is to turn things over to him and not be such a control freak. Hard to do when I was the oldest and the one in the family that everybody relied on. This site has let me know that I am not alone.
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Claudia, as another oldest with messed-up parents, I absolutely know what you are talking about. But as you are also realizing, it doesn't do much good. I started training myself during chemo, by giving myself a present after each chemo. Sounds silly, perhaps, but it was a good beginning. I go to the gym 3X a week, and the dishes or whatever will just have to wait till I get back.
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DIM DOSAGE
HI allI have bene avoiding te ALS for numerous health reasons and have broken 3 bones.
Just had my first post LX mammo...its been a yr. They mentioned some assymetrical density in the good breast. They say it was there for 2 previous mammos so they are not too concerned ( but I am )
I looked into DIM before , but I have a goiter and my endo dr said it could up my risk of thyroid cancer.I feel like I MUST do ' something" .
I am thinking of DIM again, but perhaps in a low dose.
Does anyone know a good sorce and/or where I can order some and cut the dosage ( pill rather than capsule) I'd prefer to find a good source of a dose under 75 if possible.
Thanks for any leads.
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Hi Purple,
I just ordered and received Natures Way DIM Plus from drugstore.com. I saw this brand mentioned on a thread, maybe it was this one? The serving size is 2 capsules, which is 100 mg so you could take just one. Now, I'm a little worried because I came across a thread yesterday mentioning DIM increases your progesterone. I'm highly ER/PR positive, 86% and 88% respectively. Ugh! I am damned if I do and damned if I don't! ☺
Good luck! Please post on what you decide and find. I haven't started taking it yet.
Amy0 -
I get all my supplements, including DIM from vitacost.com - best prices!
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From my research....BioResponse DIM seems to be the best absorbed? This is the one the NCI used in their studies w/ awesome results!...I don't see a problem, really, with raising the progesterone...I am finding out everything is a balancing act and that estrogen may not be the enemy afterall, but an imbalance of progesterone with the estrogen? I am trying to find a good hormone Doc and have found some great options from this site...I looked under Pennsylvania for myself, but you can pick your own state!
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Fwiw, my integrative oncologist has had me on DIM (Nature's Way) for over 2 years and has never mentioned a potential rise in Progesterone levels as a problem. I take 300 mg/day.
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across a thread yesterday mentioning DIM increases your progesterone
THX
Not too thrilled with the thought of that. my numbers are at 98%
Thank you,0 -
I've read tons on DIM and have never seen anything about raising progesterone, although I have read quite a bit on both schools of thought as to whether increasing progesterone can be a good thing. I am only 15% positive, but 90-100% estrogen positive. My onc doc told me being progesterone positive is a good thing.
I have a very tender tummy, a cranky pancreas and a somewhat low thyroid and have not experienced any problems with DIM. In fact, after a recent bout of pancreatitis, the DIM was the only supplement I was able to take even when I couldn't eat many foods. I've found the best price for the Natures Way at Swanson. The one most recommeded is out of CA, Oakland I think, but it was very expensive. I've never seen them in tablet form.
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Hi all! I found he thread I was reading yesterday about DIM and progesterone. The topic is DIM and PR+ breast cancer? In forum Complimentary and Holistic Medicine and Treatment.
This is the OP: "I am a long-time survivor who'd like to stay that way. I had been taking DIM but stopped because I read things about the owner of the particular company that gave me great pause. When I started to look around for DIM put out by other companies I noticed in the research something that escaped me earlier - DIM increases PR levels. Well my BC was ER+/PR+/HER+. I'm now wondering if I should be using it at all due to the fact that I am PR+?"
She didn't post any citations regarding her research though. And, I haven't done any research yet to verify her comments. I apologize if I've caused any alarm. It was "new" news to me and now I don't know what to believe. I guess when I feel up to more research I'll look into it. Right now, I have a 7 year old boy who is demanding my attention! LOL!
BTW, I took my first Nature's Way DIM today, along with my other supplements, and feel fine. No SEs. 😀0 -
She didn't post any citations regarding her research though...
Well, it's something to look into then.PLS dont apologize Amy. I dont think you caused alarm at all. Each one of us is responsibl;e for doing our own research. The great thing about this forum is that we can get opinions, ideas and ' cautions', but in the end, we make our own decisions. Thanks for giving me another avenue to explore.
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We are here to discuss it all. You do us a favor by bringing it up. Maybe its nothing - but Ill be calling my Naturopath who is a bigger reseacher than I am. Ill report back if I hear from her tomorrow.
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I think the progesterone acts in a different way than estrogen. Estrogen signaling cells to grow or reproduce and progesterone signaling them to stop. That is the way it was deacribed to me by the guy I used to get bioidenticals from. He said the breast cells have both receptors and that is the way they work during monthly cycles which is why we get sensitive breasts at certain times in the month. (Talking normal breasts, not cancer). So in theory its a good thing to be PR+ with the cancer because then the progesterone will do what its supposed to do. I think its just a theory, I don't know but it would be interesting to see it in a study, if progesterone would stop cancer cells that have pr receptors. I remember years ago mentioning the bio identicals to the breast surgeon and she said she would stay away from progestins, which is completely different from progesterone so I didn't even talk about any further.
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Ill report back if I hear from her tomorrow.
Thank you, shayne.
What is alarming is to see so many women popping a pill they aren't at all sure about ( might as well be taking tamoxifen or arimidex !) we need to have the solid research - and not just by the companies who sell the product.
I have gone to the clinical trial sites, which I trust the most, and see DIM being looked at for efficacy with some promise, but this ' progestin / progesterone' thing IS confusing and until it's cleared up, I am not any more comfortable taking the DIM than I would be the tammi.
First, do no harm!
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Thank you, Purple! Really didn't mean to cause concern but I guess it's better to have it "out" there. Thank you, Shayne! Looking forward to hearing back! I wish there was a BC encyclopedia. Just one book you could go to for ALL the answers! Sigh....
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DIM in another form is prescribed in Europe. There are probably more studies done in Germany (and other European countries). Germany is very advanced in alternative medicines. It would be a good place to start looking. I'm taking mine until I get this juicing thing down. Then I'll consider stopping. I'll be consuming a lot more green veggies then. :-)
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Mini, do you have any more info about the DIM prescribed in Europe, like a product name or something? I live in Europe and would be interested in tracking this down.
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Monine - I'll have to go back and check. It's been a while since I researched it. I will say that I wouldn't compare taking DIM with taking Tamox. DIM may not have the large studies behind it to prove its effecacy (although there is positive research results out there), but it also does not cause other cancers, blood clots, and the other serios SE's that Tamox can. It may not be a cure all but if you buy a quality brand, at worst you're taking something that has no effect on the cancer, and at best you'll be helping your body fight cancer, IMHO.
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at worst you're taking something that has no effect on the cancer, and at best you'll be helping your body fight cancer
Not necessarily.It can cause thyroid issues - which can potentially lead to thyroid cancer. DIM is goiterous.
And this whole <sub>topic began when someone brought up the potential to INCR your progresterone. I still think we need to be cautious as to what we pop into our mouths.
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That someone was me! :-) Oops!
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But again, amy, I think we all agree - that is a GOOD thing ! I personally thank you for it.Nobody wants to bury their head in the sand.
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😊 I've done a little looking but haven't found anything yet. I wish the OP on the other thread had posted citations. Maybe I should re-read the entire thread.
I also didn't realize it can cause thyroid issues. 😟0 -
It has a much less threat of causing thyroid issues if one is on the brownstein iodine protocol..
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on the brownstein iodine protocol..
Not according to my excellent endocrinologist. IN FACT, she warned me against taking iodine. I really think it is critical that people start LOOKING at who/where they are getting this info from. Is it PubMed ? Is it someone with a PhD ?
Please be careful, ladies.0 -
When I worked for a wellness doctor, I did all the research (pulling peer reviewed articles from pubmed and various peer reviewed databases) and everything I saw on iodine indicated it was very protective of breast cancer. I am curious why your endocrinologist indicates otherwise (articles? papers?).
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This study just came out:
http://www.orlandosentinel.com/features/blogs/vital-signs/os-exercise-breast-cancer,0,4739829.post
"Changes in how estrogen breaks down, or metabolizes, in women who exercise may explain why aerobic activity lowers a woman’s breast cancer risk, according to a study out of the University of Minnesota.
Scientists have long known that exercise lowers breast cancer risk, but the new study, published in Cancer Epidemiology, Biomarkers & Prevention, a journal of the American Association for Cancer Research, sheds light on possibly why.
Women who did aerobic exercises had an increased ratio of “good” to “bad” estrogen byproducts, researchers found."
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Thanks, Momine!
WallyI did look at studies etc ... many many mos ago. Sorry, nothing handy right now, but as I am sure you know- if you have thyroid issues they are complex. Hyper or hypo, goiters etc etc ... It takes a darn doctor ( thats why they have endos :>) to truly understand and deal with all the complexities.
Even the iodine uptake test can be iffy for some, according to my dr.
All I know for certain is this - I am hyper / not hypo and my dr. told me to stay away for the iodine.
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Thanks, Momine! As a regular exerciser, I like reading this kind of stuff to keep me motivated.
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Heidi, me too. I really do think that exercise is one of the most important "alternative" treatments out there.
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Purple my only understanding about thyroid issues is that they're very often under diagnosed. I have heard so many times from women who feel their thyroid is "not right" only to have all the tests come back "normal." So to your point, yes, I imagine it's very complex!
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I am hypo.......
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Careful ladies, when trying to access last link posted, I was warned of malware
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Yes, never just settle for a TSH test. Does NOT provide enough info at all. Ask your DR for a " Full thryoid panel"
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I had just finished a marathon when I had my first diagnosis. I was very healthy, slim, and ran 45-50 miles a week. Yet, I still got cancer.
My mother thought it was because I was exercising too much and therefore depressing my immune system; thereby allowing the embryonic cancer cell to activate.
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Well, I just scheduled my initial consult with Dr. George Wong, famous herbalist in NYC. He supposedly has an herbal alternative to Tamoxifen and I am excited to finally meet him...I will keep everyone posted as to what herbs he gives me and how they work for my hormones since I am declining tamox...
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I've been using pink salt. You get the good flavor and lots of trace minerals without the iodine.
Of course, Purple, people have to use their own judgment as to what they take depending on their conditions. I was talking in general terms. Not everyone has the same health issues and like most things in life what is bad for one may fine for another. There are things that are recommended in a cancer protocol that I can't take because of my pancreas or my bones. Personally, I think that eating right is our biggest ally. The more I research what we are putting in our bodies, the more I am convinced of it. I've started juicing vegetables and am working on totally changing my diet. It may cost more to eat this way, but it will be offset by the savings in supplements. The peace of mind that things are natural and healthful whether you have cancer or not is an added bonus.
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Of course, Purple, people have to use their own judgment
That's my concern, actually !
It seems some people are not informing themselves and just going by websites, advertisements, other peoples experiences or even just their own judgment. I am just saying it would be prudent to get some good links to scientific research before consuming anything ...except ' real food ' ! :>)0 -
Mini, if salt is actual sea salt, it has iodine, as far as I know.
Purple, "before consuming anything ...except ' real food ' !" LOL!
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Not to be argumentative Purple, but I used my own judgment in making the decision not to take Tamox, as I'm sure all but a handful of people that were lucky enough to find a holistic oncologist (an oxymoron if I ever heard one) have. I never suggested that people blindly go out and take whatever someone recommends, but you yourself have said on other threads that you would have done some things differently (as have I said as well). Why is that? Likely because like most of us, you did what the doctors recommended. Now, in hindsight, we'd do some things differently even though the doctors would still recommend the standard course of treatment. Is that not using our own judgment?
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Hi ladies.....have a question.....does anyone take "turkeytail mushrooms" would appreciate comments.
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For me some of the research around is like statistics, can be made to fit...............and there is some excellent observational study research (ongoing live) on alternatives.....
I have some very hard decisions to make and its really tough - quality of life and feeling like me again but with a greater fear of a resurgence or rebirth of those horrid c cells versus a better chance of longer life but feeling like an alien and pretty rubbish during that time.....
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Actually, real sea salt does not have iodine but other minerals. Real food has lost much of its nutritional content due to depletion of soil nutrients. Our breads used to have iodine in it, but is now replaced with bromide which is a halogen and displaces iodine in our bodies.
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Is that not using our own judgment?
Yes, I agree completely, mini , in using our own judgment...in the end, I think that we all should (IMO) but what concerns me is people who , at least on the surface, appear to be believing things blindly without evidence - and basing unproven things into their equation of tx choices. I DO think we all should make our own judgments, once we have looked at all the research and applied them to our own situations. I just get concerned when I see ppl. looking at websites with no scientific studies to back them up and THEN making judgments based on things that may be unproven.
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Just because someone posts a website of interest to them doen't mean they haven't researched that subject and cross referenced it. Not everything has a clinical study attached to it either. Some places/treatments cannot afford a clinical study. All conventional clinical studies are funded by the pharmaceutical companies who have billions of dollars...Also, why does this bother you so much? let people make decisions for themselves, you are not responsible for them.
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Interesting about the sea salt. Apparently it does have some iodine, but very little. I guess that explains why people eat seaweed in many places.
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doen't mean they haven't researched that subject and cross referenced it. Not everything has a clinical study attached to it either
It was implied when questions were asked and no one could cite anything in earlier posts. Btw, there have been clinical studies on DIM. They are on PubMed. The iodine issue is concerning for someone who has problems with their thyroid. I guess knowledge is a powerful tool .
I'm not stopping anyone from making any decision! We are here as a support group, and I offered my concern. That is how it was meant...take it as you like.
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Many thyroid issues as well as many other health issues can be directly related to iodine metabolism in the body.
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I am so confused! Had a thyroidectomy April 22, path indicated cancer. Should I take iodine supplements?
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I would definitely join the iodine group on yahoo groups run by Lynn Farrow...she is an expert on hormones, iodine and thyroid...and, the rest of the ladies there have been through everything!
Another excellent resource...read her Bio!
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Michele
Cancer is serious bunsiess . The BEST resource on that would be an endocrinologist.
Good Luck to you!0 -
Cancer IS serious business which is why I wouldn't go with just any endocrinologist, just like i wouldn't go with just any oncologist. Check out the recommended endocrinologists on breastcancerchoices.org
They are recommended by women who have had a high success rate with treatments.
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Forgive me if I am making this too simplistic or too broad-stroked, but iodine affects the thyroid--yes.People used to get huge goiters, which is why iodine was added to table salt (used by most everyone). Iodine affecting cancer...well..one can say that women with thyroid "issues" seem to have a higher rate of breast cancer, but how or if it relates to iodine intake may be inaccurate in that it causes cancer.
As for exercise, I too exercised 6 days/week, ran 15 miles/day or did the nordic track for 45 minutes daily plus took an hour walk with DH and did yoga 5 days/week plus lifted weights. I sometimes wonder if I overexercised.
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yes.People used to get huge goiters, which is why iodine was added to table salt (used by most everyone). Iodine affecting cancer...well..one can say that women with thyroid "issues" seem to have a higher rate of breast cancer, but how or if it relates to iodine intake may be inaccurate in that it causes cancer.
I hope you dont think I was saying that iodine causes cancer (?)
I'm a little confused.In any case, you are right, of course, iodine was added to the salt.
Ironically, I salt loaded for many yrs . under the advice of my PCP and a cardio dr. due to very very low BP, but stilll have a large multinodular goiter (and BC of course ). Go figure. This is why I say - thyroid issues can be complex .
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The link between breast cancer and thyroid cancer is not iodine but something genetic called Cowden syndrome. High uric acid causes goiters. And Purple you are right thyroid and all endocrine issue are extremely complex.
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The breasts compete with the thyroid for iodine - hence the high number of us with thyroid issues as well as BC - not that any study actually says there is a link. In Japan, the incidence of bc is low.
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It can be a nightmare when you begin researching. I got to the point that I had to step away for a while becase I was so confused. For every must there's a mustn't, for every do there's a don't. I ruled out anecdotal posts and those that involved small groups of people. I found studies at hospitals, universities and such. An earlier poster is right, major studies are funded by big pharma. They aren't spending millions out of the goodness of their hearts. Thats why every condition is now a disease. A condition will force you to change your behavior; a disease will let you continue poor behavior as long as you take their drugs. Yes there are diseases that need drugs, but not every one. Much can be done with help of a good nutritionist.
When all is said and done, we do have to use our own judgment and make our own decisions. Do I question mine? Sometimes, yes. But I would also question my decision to take Tamox if that had been my choice. And I think every person with cancer thinks about it coming back somewhere in the back of their mind.
As for mushrooms, I take take a turkey tail mushroom supplement when I haven't eaten enough organic ones. I'm also starting to juice. Green juice; not too much fruit because of the sugar. I also agree about exercise. Except the fact that my mom had cancer in her 60's (surgery only, no rads, chemo or meds, and no recurrence). I had none of the risk factors usually cited. Nor was my tumor found by self-examination. I know people that have them all and have never been sick a day in their lives. Go figure.
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For every must there's a mustn't, for every do there's a don't.
Couldnt agree more !0 -
Agree about the thyroid/endocrine issues being really difficult to sort out. Trying to read the info as a lay person can make your head spin.
All I could find as a certain thing is that iodine deficiency is associated with fibrocystic breast disease. Therefore, some people hypothesize that it may also be related to breast cancer.
At the same time, taking too much iodine is not good either. So what I concluded is that it is probably safer to include a good amount of sea food and sea weed in one's regular diet, rather than ingest large amounts of supplemental iodine.
Also, my uncle had experimental iodine treatment for his bladder cancer in France. I think it saved him one scrape job (they scrape out the cancer cells every 6 months or so), but it was definitely not a cure.
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del
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I had horrible stomach problems from both AI's I tried. I had just gotten it healed up after a year and then I found myself almost back from where I started. My doc told me the first time that I had issues that it takes 6 months to a year for the intestinal tract to heal.
I've ordered the Omega 8006. The same as the 8004 only in black & chrome. The black and chrome will go better with kitchen, and since it's going to be left out all the time I got the 8006; otherwise I would have gotten the 8004. Do you like yours? I've done tons of research and keep coming back to the Omega. There are naysayers for every brand, but for the green stuff, the Omega seemd to be the best and the easiest to clean. In my price range anyway. I found a couple that cost as much as some of the cars I've owned. One was $5k. Wowzer. I'm excited about using it. Especially when I found recipes for using the pulp to make crackers and to use in soup stock. How long does it take your to make your juice and clean up?
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Don't you just love when you start a drug and RIGHT AFTER that you come out with some bizzaro SE and the dr says oh it couldn't be the drug. You must have come down with something. They do it EVERY time! People know their bodies, whan are going to undrrstand that?! I had constantly running eyes from chemo. The nurse coordinator said that never happens with that type of chemo. Maybe its a cold or something. Yeah ok, I'm sure its just a coincidence! Then she ccalled back and said that the onc said its rare but it DOES happen with that chemo (AC).
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I have the Jack LaLanne model. It cost $100 at Sears. It is pretty easy to clean.
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I wrote this long response and it disappeared.
When I went in to my oncs office after my SEs got severe - i wrote them all down - at least 20 SEs. As I went thru each one on the list - the nurse responded to each one - well that could be an underlying health issue that just comes out with age, or - that could be this.....that could be that. EACH friggin SE!!! Not ONE did she attribute to the drug!! And my most serious SE was heart palpitations - she said it was probably anxiety! Anxiety?!?! She didnt even advise me to check it out! I went to my family doctor and he was aghast!! He apologized for talking shit about another doctor, but he was aghast! I had a complete blood work up and EKG - all normal - this was 3 weeks after stopping aromasin. They just dont want to report SEs to the drug company. Well, I reported them myself to the FDA site online. Needless to say, Im not seeing that Onc or any Onc right now. Just my naturopath, my fam doctor, my FNP and will be getting my screenings at a breast care center in the city near me.
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HI,
I'm Della. I was diagnosed with IIa breast cancer. IIa because it was 2.5 cm. Clean nodes and clean margins. No family history of disease, and hormone (wow) positive. 98% est/ 90% pr of tumor.
I cannot take Tamoxifen. I get horrible side effects; the worst one being that it makes me suicidal because it interferes with my anti-depressants. Se recommended removing my ovaries. I am against it for the same reason as the Tamoxifen, ob/gyn agrees with me. My GP recommends removing both breasts "as a precaution". My Onco DX score was 10. The cancer was slow growing.
Am I crazy for turning both the surgeries down?? I feel like the cancer won't return; I could, of course, be wrong. I have started taking DIM Plus from Nature's Way. I have tried to modify my diet and my GP/md is recommending I lost 30 lbs. I am not obese, but 5'9" and can hold the weight but she says it will reduce the estrogen. I'm all for it, but wow, 30 pounds seems like a mountain!
I am trying a "low estrogen diet." Confusing to say the least. And taking DIM, among other supplements. I feel like cutting pieces off myself with an onco score of 10 is kinda extreme. I want to try some natural ways first.
BTW: What's a "met?"
Could someone please talk to me about this? Please. I am scared and don't have a clue if I am making the right decisions. It feels right to me to not have the surgeries and to turn down the meds and try natural supplements.
Thanks, D
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I take Kelp, DIM Plus, and I am trying to lose weight to lower my estrogen. I can't take Tamoxifen. I have just started these, so I am willing to listen and suggest all that I can.
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This is for HLB:
I get every weird SE there is. So I feel for you. I had an infection in my breast due to fluid build up and was prescribed Levoquin. Don't ever take it unless it's a last resort. I am only now, a month later, getting over the tendonitis!! It says that SE is usually for people over 60; I am in my 40's. I totally get what you're saying!
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Well, I reported them myself to the FDA site online.
Good for you., Shayne!
If everyone in the same boat would do that , perhaps we would end up with better/safer drugs!
THX0 -
I didn't think to report the Aromasin, but will do it now. My onc admitted there were SEs, but downplayed them.
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My Onc downplayed them too - BUT - she did tell me 40% of patients experience SEs - which I told her was A LOT! im just glad im off of them. I can only pray for better drugs in the future! Im almost thankful that my SEs WERE so severe, because I feel SO much better NOT being on it. I also mistrust the idea that eliminating all estrogen from the body is what is necessary to remaine cancer free. This is a powerful drug - taking 3 months to fully leave my body. I still have some stiffness in my hands that I hope will resolve.
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I had horrid SE's. So bad they have the drugs down as allergies. I had every symptom you could imagine. From the minor to the major ones. Personally, I wouldn't do a pre-emptive mastectomy; especially with an Onc score of 10 (mine was 18 and I had a lumpectomy). I did do rads, but if I had to do it over again I wouldn't. If mine comes back, I might consider it. Right now I'm avoiding sugar except raw stevia and xorbitol (sp?), juicing major greens, eataing only hormone free eggs, cutting dairy, eating grass-fed, hormone free meat, taking DIM and other supplements and trying my best to avoid all things processed. I'm talking to my doc about major dose vitamin C infusions (recommended by my nutritionist).
I do think sometimes about what might happen by not taking the meds, but for me, I think I would worry more about other cancers, blood clots, etc., and that's not even the "minor" SE's like the aches and pains, fatigue, memory loss, etc.
I've had people tell me I should do things another way. I even filled the Rx for a 3rd drug. It's still sitting in my cpboard. I can't bring myself to take it. I feel like I'm doing what is right. And when all is said and done, all I can do is what I believe is best for me. My hsband, btw, had testicular cancer and chose the traditional route. It's been almost 30 years now and no recurrence. He is fine with his choices and I'm fine with mine. Only time will tell for me if I'm as successful as my husband was.
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- BUT - she did tell me 40% of patients experience SEs
imagine ,.thats only what is reported !
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I bet if men ahd to take them they´d find better drugs a lot faster, or at least listen to us more about the SE´s and work on dosage/strength modification......instead we are all hit with a hormone sledgehammer no matter our size or fat ratios....
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So bloody true! We can't win.
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I read that for every 1 person that will lodge a complaint there are 24 that don't. Figure that in the equation and it throws a whole new light on the 40% figure. I'm sure we all know people that can't take or use something that we do. I can't take ibuprofen. I've never reported my side effects. I just don't take it.
And I agree, if 99% of men got breast cancer and 1% of women, we'd be a lot further down the road to a cure. And you wouldn't see a bunch of blue crap with "save the moobs" or "fight like a boy" on it. You see how fast they managed to create the "little blue pill" when increasing numbers of men had a need for it. Arghhh.
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And I agree, if 99% of men got breast cancer and 1% of women, we'd be a lot further down the road to a cure
I SOOO agree !0 -
I never thought about that, Mini1.
True! You don't see men running around with blue ribbons, celebrating prostate cancer awareness, buying blue crap they don't need. This pink stuff is so embarassing.
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So true!!!
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Just once I'd like to see a "Save the Nads" t-shirt. Anyone know the color of the testicular cancer ribbon without looking it up? Or ever heard of a testicular cancer awareness month? Personally, the only BC shirt I would wear is the one that says "Stop Pimpin' the Pink." We're a big money maker; especially in October.
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We're a big money maker; especially in October.
Dont get me going! How many people who walk and wear pink give a hoot about lymphedema? How many BIG name fundraisers are out there telling it like it is for lymphedema.None.
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I sent in the following to the "Tell Us" department of our city's local paper.
Shortly after enduring a costly operation for cancer, I received a letter from the American Cancer Society.
Thinking it was perhaps a list of services that they provide for cancer patients, or maybe an offer of assistance, or even a get-well card, I opened the letter to find a request for a donation!
----------------------------------------------------------------------------------------------
There were no responses to the article, but I felt so good just writing it and have saved it all these years.
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I am hoping someone can answer a question about seeing the oncologist. If I have already decided against taking Tamoxifen then will the Oncologist have no reason to see me again and monitor me after I inform him of that? I am taking DIM and Vitamin D. Can someone with more experience with taking the natural route tell me what their relationship with their oncologist is like, if any? I mean, what does the oncologist do if you are not taking their recommendation?
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You can report drug side effects (and read what others have reported) at: www.rxisk.org
I have been on their site many times reading about various side effects.
Sending good thoughts
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Mini, love your T-shirt slogan: "Stop Pimpin' the Pink." Also agree in general on the sorry state of BC care and medications. I had a bout of dyspnea last summer, and after the docs could find no cause, I suggested it might be the femara. They all poo-pooed that. One suggested that it was probably just "anxiety" (grrrrrrr! and, on the theme here, would they tell a guy that?). I tried to tell him that I had experienced anxiety when first DXed, and this was definitely not it. My surgeon thought it was after-effects of treatment, but that doesn't really make any sense either, since a CT came out clean, and any lung damage from rads would have shown up there (I asked), plus my heart U/S showed my heart in tip-top shape.
Yeah, I am still a bit steamed
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Lets get that T shirt made !
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I wondered if my doc would see me after I refused the meds since he is definitely pro meds, but he didn't. He told me that all he could do is recommend what he think is best and the decision was mine to make. I heard my regular doc say under her breath that I was doing the same thing she would. I have heard of others who have been refused. If you have a choice, than I'd find another one who will accept your decision. A few don't have a lot of options due to where they live, so unfortunately they have to lie and say they are taking it when they aren't.
Someone asked me why I go if I don't take the meds. I go qarterly because they still check my tumor markers, but I refuse the chest xrays. Needless rads to me unless I have symptoms that warrant one. Some docs poo poo the tumor markers, but they found the tumor in my husbands chest weeks, even months before it would have been found due to the pain it would have eventually caused. It had already spread into the lymph glands in his chest and would have been much worse w/o the tests. I go quarterly now. Eventually that will stretch out to every 6 months and then, Lord willing, once a year. I have other conditions as well, so this gets everything measured and monitored at one time. I just have them send my records to my regular doc and she has all the info.
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Mini I did the same thing. Tefused tamox but I still saw the onc for 8 uears and got TMs which is how I found mets before I had any symptoms. I also refused chest xrays and bone density. Not going to take fosamax anywaay so whay bother. Of course now I'm on xgeva.
Dellah I have a friend who had a very bad reaction to levaquin and he is on disabilty. This was a tall handsome Man who we used to call him and his friend "the kennedys" and he was a drug rep. He was in the newspaper with his story once. He lost so much weight he was emaciated.0 -
I don't see my onc. He still wanted to see me after I quit Aromasin, but I see my cardiologist every few months so he can do the blood tests. I also see my internist twice a year and he can do blood tests as well. Every visit to the onc was so expensive, I have to pay 20 percent, so I decided I really didn't need three doctors.
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and got TMs
Mine have never been checked. I resume that is blood tests ? If so , what kind exactly ?
Thanks for any clarification.0 -
TM´s are tumour markers
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Yes, I presumed tat . Thank you. But, how do they 'find ' the TM - is it through bloodwork and if so , does the lab work have a specific name ?
THX again!0 -
Purple, there are several tumor marker tests to check specific indicators. I suspect they measure some kind of protein, but I don't actually know. My doc checks CEA, CA 15-3 and CA 125.
Thing is that CA 125, for example, is not reliable unless you are in menopause, and all of these TMs have sketchy reliability. You can get a high CA 125 reading if you have had a cold, for example (happened twice to my poor mother).
My doc uses them, because it is one more tool, even if it is not a particularly good one. Also, I had extensive lympho-vascular invasion, i.e. high risk of recurrence/mets.
In your case, with an early stage cancer and no nodes, TMs would probably be overkill.
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It is a blood test the Dr's do. I have mine checked every 6 months. Many Dr's as I understand it don't do them. I personally find it nerve racking waiting till the results come in. I had them done on Thursday and hope to find out on Monday!!!
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The one I get ca (cancer antigen) 27-29. I measure a certain antigen in the blood that is present with cancer. Any number 38 or under is considered normal. Mine were always in the 20s for 8 years then suddenly went too 77, so we did scans and the bone mets were found. They aren't reliable for everyone but for me they are so I was glad to get them. If I would simply wait for symptoms I would have had pain and who knows what else, like surgical procedures on the spine or rads. All I had to do was go on letrozole and xgeva and now they are back down to 30. Not to mention if I waited for symptoms it might have had tome to spread to another organ. If you want to get them done you almost have to do a few in a row to see how they trend. Some people do find it gives anxiety to wait for results, but after awhile I got to the point where I didn't worry at all. I even stopped checking the results assuming it would be normal. Sure enough that's when it went up :-(. Idk how long it would have taken to get symptoms but I definitely feel like I got a good head start on treating it and keeping it where its at for awhile.
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Thank you ladies for answering my question. Happy Mothers Day!
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I have begun taking DIM Plus, enhanced absorbtion since I can't take tamoxifen. Has anyone on here had any experience with this? Any other supplements I should be looking at besides Zinc, flaxseed, B vitamines? I could use any help. The "low estrogen diet" is confusing for me. Oh, and I am gaining weight, my face is breaking out, and my face and hair are now oily, but I am persistently told that I am not menapausal. ???? Help???
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I went to a raw foods class today and was amazed. When I was reading that we should be eating 70% raw food, all I could see is me eating salad all day. Blech. Boy was I wrong. We made raw food donut holes, guacamole wraps, sorbet, ice cream sandwiches, smoothies, and raw brownies. All quick, easy and delicious. My son made a "key lime pie" with avacodes. I swear in a blind taste test you would never know you were eating raw food. I'm telling you, it was all delicious!
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In your case, with an early stage cancer and no nodes, TMs would probably be overkill.
Thanks for the reply, Momine. Seems it will be just on more thing that I skip. Blood tests are not high up on my ' to do ' list as I have lymphedema. Thank you.
Happy Mothers day to all moms !
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Della,
I have also been taking DIM+ for a little over 2 years, but have not experienced any of the problems you've mentioned. In my own experience, break outs, weight gain and oily hair/skin have occurred when my estrogen levels have been high (with low progesterone levels.). Have you had your levels tested recently? You don't mention your age.
Other supplements you may want to consider are D3, curcumin, resveratrol, and mushrooms (I take shiitake andy chaga supplements).0 -
I guess I was not clear in my other post. My breakouts and oily skin is before using the DIM. I want to know if it helps. Thanks!!!!!
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I am 49 but docs say I am NOT menapausal. Go figure.
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Della, if it makes you feel any better, I am almost 56 and last had a period this past January, so haven't quite reached the official menopausal mark yet either. My ovaries just don't seem to want to call it quits.
Can't say whether it is the DIM, but I have noticed that when I skip periods and have more menopausal symptoms, like hot flashes and night sweats, my skin clears up and hair needs less frequent shampooing.0 -
Thanks, Momoschki.
I can't take Tamoxifen, but since I tried it the first time, it's like my system is hung up in static mode. I've gained weight around my stomach (can't lose it), tired, achy, just like the Tamoxifen. I read about the Zinc, Selenium, and DIM. I have bought all three. Doc says I need to get back to my "ideal" weight, which is 30 lbs lighter (I'm 5'9", and my ideal weight is emaciated), but she says it will lower the estrogen. I'm scared to not take the poisons and scared to take the poisons from the doc. Does that make sense??
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Della
It makes perfect sense. I take neither...which may not be too wise. I lost 30 lbs recently. Weight Watchers works.
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del
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CCFW - I've been reading on what you can use the pulp for and have found some interesting post and videos. Making crackers, using it in smoothies, in soup stock and adding it to muffins; even in pet food. Since so much is created, I know that much of it will end up in my compost pile, but I'm excited to see what uses I can come up with.
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I admire people who do the juicer thing, but it's all I can do to keep fresh fruit stocked. Plus, how do you get over drinking something so green. I feel like I am drinking Kermit's plasma. LOL!
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Oh my gosh I love it, "Kermit's plasma"!!! So true!
Today I added red sweet beets to my smoothie it was so good. My next try is to add mushrooms to it.
Sharon
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I started drinking green smoothies as soon as I got home from surgery. we bought a Vitamix - ive been drinking them every day since. I LOVE them. They give me so much energy, I dont even drink coffee anymore! I keep frozen berries and 3or 4 different kinds of greens, rotating them every day. Ive got my husband drinking them too. The best book is The Green Smoothie Revolution. Whats great about the smoothies vs juicing - you get all that fiber with smoothies, so keeps your colon healthy too. I love my green smoothies!!
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They look green but taste like the fruit. If you put spinach in a smoothie with any kind of berries, you won't taste the spinach. I like thowing in frozen cranberries. I do small mushy fruits like kiwi, peaches and strawberries in a blender. A masticating juicer will do greens, apples, carrots, celery, etc., but doesn't do the mushy stuff well. I don't like collard and beet greens, but put them in juice and it's good. One of our vendors created a green drink when she was diagnosed with MS and then breast CA 3 months later. It looks like swamp bilge, but it taste like fresh oranges. :-) She's been CA free for 13 years btw.
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My green smoothies turn out brown, purple or army green. They look awful. They taste ok but I wouldn't say I love them. Maybe I just don't have the fruiit/veggie ratio down yet.
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I use whatever veggies I have on hand and then add an apple and half a lemon. I have tried adding a potato (tasted terrible) and an onion (not that great either.
It looks like swamp water and varies in color from chartreuse to a bright kelly green---
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Mine has one giant kale leaf and one small apple, chia seeds, whey protein, flax lignans, frozen blueberries, raspberries and a few red grapes. I'd like to put more greens in but I don't like the taste. Most of the time its pretty good but if the kale leaf is extra big its not as good. Chartreuse is a good name for the color! And the blueberries make it a yukky gray color sometimes. I tried collard greens but for some reason there are always little fleks of green material like it never quite gets pulverized enough. Sometimes I put parsley in as well.
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After reading the GREEN SMOOTHIE REVOLUTION - i learned so much about green smoothies. Greens and fruit will be digested at the same rate. Adding vegetatbles make it harder (for some) to digest and can cause bloating/gass etc..... So I just use fresh organic greens of all kinds. My favorites are spinach, bok choy and swiss chard. The worst is kale - but it is SOOOO great for you nutrionally! So I rotate that one in. I usually do 1 cup of organic fresh or frozen berries or whatever I have.....and 2cups of greens. I dont add in powders or extras as it slows down how it metabilizes in the body. I store in a ball jar 1/2 for lunch, 1/2 for breakfast
......I love them!
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To Momoschki,
Since I have started two capsules of DIM plus, my night sweats are gone! Face is oily still but energy level has kicked up a notch.0 -
What does anyone know about calcium d-glucarate versus DIM?
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I too felt that if I didn't "goose step" to the Tamoxifen cadence that I would be signing my death warrant. All my doctors, oncologist, md, surgeon, all of them recommended that I need to take it. I am ER+ 98% Estrogen, 90% Prog, found in the tumor. I understand that it will cut my chances of recurrence, however, the SE were so awful that I couldn't function. The worst being severe depression, dangerously so.
So I felt I had to make a choice for quality of life or choosing something (Tamox) that threatened me in a different way. So yes, I feel like my butt is swinging in the wind at the moment with nothing to 'protect' me. I refused to have my ovaries removed on advice of an ob/gyn because he said the results could possibly be the same with the depression and quality of life.
I am taking DIM+ enhanced absorption; zinc; Vit C; Selenium; Flaxseed (but I am leery of taking that for some reason).
***Tumor: 2.5cm; ER+; No node involvement and clear margins; no genetic markers; 10 on the OncoDx.
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Quick question.....anyone know anything about taking mint when you are ER PR+....
have lots of mint around and was going to start making up batches of Moroccan green tea...there are a few non conclusive studies saying maybe not good for us!!!!0 -
del
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CCFW- thanks for the info. Lately, I have been overwhelmed regarding what to take...I will get the book you suggested.
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I had pretty bad depression as well on aromasin. Im off of it, and using exercise and supplements, as well as a better diet - I feel protected. I dont believe these drugs protect us.
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I have been taking Arimidex for almost a year. I have seen dramatic changes in my skin. Not good ones. This past month I have been depressed and my body hurt worse and worse. Three days ago I could hardly stand to walk around. I stopped taking the Arimidex and after two days I feel normal again and my body no longer hurts.
I am 71 and I just don't think taking this drug is worth it. I am going to get DIM and I already make vegetable smoothies and will do so on a more frequent basis.
I also did the cancer math and came up with results that indicate such a small benefit.
I have been made to feel completely paranoid by the onc that if I didn't take Armidex I would be sure to get a recurrence.
I just can't go on with this drug. It's doing such damage to my body.
Kathy
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So agree - I did the cancermath it and taking the drug only made a 1% difference.....not worth it. I also noticed a difference in my skin (among so many other things). I just bought some really nice organic skin care items and my skin is glowing now.
I know its done some damage.....now that im 4 months off the drug - starting to feel like myself again and almost all of the SEs are gone. Im 55. I have a lot of faith in my body, and what I put in it - to fight recurrence.0 -
Shayne, what was your stage etc?
Kathy
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DCIS - stage 0 - my lesion was the size of 1/2 pea. Had some calcifications, i think 5, that were removed during the biopsy. 100% ER/PR positive
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Shayne, you are so lucky to have had such a tiny issue. My issue is what gives rise to my own paranoia. However, I still think taking the Arimidex is just not worth my feeling like I'm 100 years old. I have always been a very fit and active person and it's horrible to suddenly feel so old for the benefit of a year or two of additional time.
Plus there is no way for anyone to know if you will or will not get a recurrence. Doctors don't know. There are women who have only had surgery and never had another issue. It's all a crapshoot anyway.
Kathy
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I know - Im also very active......and was in so much joint pain which exasperated the depression, then the heart palpitations started......It was horrible, way worse than the surgery and rads. Its taken me months to recover and leaves me wondering if permanent damage was done. I am very lucky - I had put off having a mamo for years, even after my sister was dx 5 years previous. Then a few friends were dx in my community and I got scared. This was my first mamo. I had to go to a larger city for care. My sister had the same dx, but hers was larger and she lost her breast. Im very grateful - it was definitely a wake up call in all aspects of my life. But I am not afraid of NOT being on the drug.
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am 71 and I just don't think taking this drug is worth it
There have bene some studies at MassGeneral suggesting women over 70 may get little benefit from radiation or aromasin type drugs. Google, ask your own dr, do your research and then decide.
Good Luck to you.
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ive read those studies too
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I'm 55 and had HORRIBLE SE's with 2 of the AI's. They have them down as allergens for me. I too am looking at quality of life over quantity. I have gotten over most of my SE's, but a few may be permanent. We'll have to see. I am 95-100% estrogen+, 15-20% Progesterone positive. My doc said that the + progesterone is actually a good thing. They tell you massive numbers like 50% greater chance of survival with the meds, but when you extrapolate it out, it's much lower; especially when they consider "surviving" as living 5 years. For me it's like 7-9 MONTHS. And in return you feel like crap and expose yourself to known carcinogens. No thank you. Bottom line for me is that 89% survive without taking anything. Pretty good odds if you ask me given the SE's of the drugs.
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You sound like you had a similar experience to mine Mini1. They wanted to put me on a 2nd AI, or to take a break and take the same one.......I told them that the definition of crazy is to do the same thing over and over expecting a different result. Im not crazy......
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I wish someone would explain the "cancer math" to me. I am not sure how to calculate my odds if I don't take the Tamoxifen.
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Here is a link to the SLOAN KETTERING site. You need to know your pathology. You plug in your info and it gives you your rating, based on your stats and treatment.
http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspxHere is another one called CANCER MATH - tho I like the Sloan Kettering one better
http://lifemath.net/cancer/breastcancer/outcome/0 -
Interesting, I have re-started letrozole as was told it is SO important for me, but only taking half a pill (my idea) and within just a few days my sleep is seriously disrupted again......
I was 95% ER positive and 85% PR positive so does the high PR give me an advantage?
I am taking I3C too and Salvestrol and D3........I did the cancermath and it said it gave me an extra 4 YEARS but I am not sure that can be correct......will check out the other site and see what that says, although I always find statistics depressing for me!
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Sloan Kettering does not work for life stats for invasive cancer, told me 90% chance I had cancer in other lymph nodes apart from sentinel but all axillary nodes were removed.....
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Lily - sorry about that - i guess its limited as far as that goes. I didnt realize.
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Thank you so much for creating this forum! I am a 6 year survivor of stage 3 Breast cancer. I have been off Arimidex for almost 3 years now because I did not like the side effects. I am currently looking for natural alternatives. Thanks so much for all the info! I can't wait to get started!
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I had my estrogen levels measured and they were "infantesable." So low they could barely measure them. I have virtally no estrogen. Music to my ears with CA that is 95-100% estrogen positive. :-)
I'm going to go in to see how the other site compares to the site I used for cancer math.
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CA that is 95-100% estrogen positive. :-)
I just dont get all this then.
If your cancer really is/was 95-100% then how it it your levels are so low ? Are you saying that lowered that much that soon? Who tested and how, may I ask ?
THX0 -
Mini1..I don't get it either, what lowered the ER level so much???????
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My regular doc ordered the testing for me (I asked her to). You'd think with all the things he checks quarterly my MO would do it, but nope. I am menopausal, so that helps, and I've been really diligent about watching what I put in and on my body. I don't know if that helps or not. I don't do any more dairy or meat that's not hormone-free, and I'm uber-careful about what's in my supplements. I don't do packaged foods or drink more than an occasional soda (I'm wasn't drinking any but fell off the wagon). I've got pancreatic issues, but I don't know if that would affect the hormones or not. I didn't think to ask her that. I am small - 98-100lbs. I don't know if that makes a difference either. I'm just glad it is what it is.
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I just wanted to pipe in that I have been taking DIM now for one month and I am amazed at how great it has made me feel. I have more energy and just feel healthier overall, better than when I got diagnosed. My hair feels thicker/healthier. Best of all my period has reduced by about 75% what it normally is. Also, this may sound wierd, but I am noticing that my body type is changing. I have never had much in the way of curves (no waistline) and I am noticing that my body is changing to be curvier. At first I just thought it was the reconstruction but even my husband noticed that I was thinning out above my waist and my hips seem more pronounced. The only wierd thing is I am getting off and on itchy face near ears which I can only attribute to the DIM as I take no other medications at all, except Vitamin D, so maybe that could be it also as I started taking them about the same time. It is really easy to take a pill that makes you feel noticeably better. I take 2 in the morning with a Vitamin D pill and then another 1 at night. Thank you all on this board who mentioned DIM as this is where I found out about it and I am thrilled.
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My regular doc ordered the testing for me
Mini
Do you mind saying of this was a blood test or urine?
Thanks for any info.
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I had asked my oncologist to tell me what my circulating levels of hormones were prior to starting Arimidex. His assistant told me it was under 12. Apparently under 12 is about what you are pre-puberty. When I asked him directly he said that basically it was so low that it could not be accurately detected.
So the question I then asked was why I needed to take a drug that reduced the estrogen if it was already so low that it was not detectable. His answer was that the cancer cells would find even the tiniest amount and grow on that. Well, from my point of view, then it doesn't really matter even if I take Arimidex because there will still be some tiny amount of estrogen floating around. In addition, I have read posts of women who took hormone blocking drugs and still had recurrence.
I have read posts that have postulated that estrogen is not the problem and that it is the balance or other factors. I did a lot of research on various studies and there were many showing that providing more progesterone counteracted the over-abundance of estrogen and stopped breast cancer cells from growing. When I presented them to my onc prior to submitting myself to chemo, he said there was no money in it for drug companies so no clinical trials would be done. (All the studies were in vitro or in vivo, no human trials).
From what I have learned here, DIM has a moderating effect on estrogen. I don't advocate everything that Suzanne Sommers says but I do believe that in regard to hormones she may be on the right track in balancing them in her body and also boosting her immune system.
I have been taking vitamin D and Calcium and Magnesium plus other basic vitamins (the B's, C) and I also take Biotin and N-Acetyl Cysteine for hair - and I have grown back much thicker hair than I had prior to the chemo. I just had a bone density scan and there is no evidence of any bone loss form taking the Arimidex. So the D and Calcium seems to be working especially since I don't eat a lot of dairy. I use Almond milk for my oatmeal or coffee.
Since I stopped taking the Arimidex a few days ago I feel so much better it's amazing. I saw a friend yesterday whom I hadn't seen in weeks and she said I looked so good and that I was "glowing". I have my energy back and no more depression or weepiness. Thank God.
Kathy
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Totally agree with you - about the balancing of hormones - not removing estrogen from the body completely - as we know what THAT does to us - those of us who have suffered the extremes in SEs from doing that.
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Re-posting this for anyone who is older and hasn't seen this.
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Sure makes more sense to me too! Using a pill that kills all the estrogen is taking the easy way out for the researches. And it is a "fits-all" dosage too which is even more mind-boggling!
I remember when birth control pills first came out. They were way too strong and caused heart problems (if I remember correctly)
The hormonals are still "a work in progress."
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I was stage three with lymph nodes involved and very hormone positive, chemo not done for other health reasons so hormones important for me but so is quality of life.....it is a real dilemma as i was pr positive too so how does that impact? ........
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Has anyone else on DIM had their periods practically stop after just one month of being on it? Normally I have a very heavy period that lasts 5-7 days, and it is extremely heavy the first 2 days. My period this month was almost non-existent and it's already gone after 1-1/2 days. I know my onco said that for hormone positive BC stopping the periods altogether would be beneficial but drastic to have a hysterectomy because that has it's own set of problems so the fact that DIM practically stopped my period in one month has got to be a good thing? I know Tamoxifen stops periods for most women. I also had no moody PMS symptoms this month (which I normally do) but I did have a couple of small cramps. Anybody else have DIM be this responsive so quickly?
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I was wondering if anyone has had their onco- ok the use of DIM. They told me at MD Anderson not to take it for it had estrogenic properties. They even double checked with a pharmacist.
Sharon
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It's supposed to reduce the bad estrogen but leave the good estrogen alone. I would think if it was estrogenic that my period would have been at least normal - not almost completely stopping it. I also have an itchy face near my ears which is another sign of menopause and I am definitely warmer - not to the extent of having hot flashes but definitely get hotter than I usually do (I used to walk around freezing a lot of times). My onco had never heard of it but he was going to research it. I have 2 friends who are pharmacists so I'll be sure to ask them about it.
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Thanks Mepic-can you take it with Tam. I am going to the Block Center tomorrow and I will ask them about it.
Sharon
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Ditto to everything above.
Purple - I had blood work done. My levels were less than 11.
My MO is aware I'm taking DIM and hasn't commented on it one way or another.
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Thx mini.
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If you are on a blood thinner you shouldn't take it. I guess it has too much vitamin K in it.
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dogsandjogs - thanks for the link. It applies to those with no node involvement. However, I just can't completely buy into the fact that only nodal involvement makes a difference. There is vascular. Too many women who had no nodal involvement had recurrence.
I absolutely agree about he one size fits all thing. That applied to the chemo and radiation as well. I was very uneasy about the chemo becasue apparently if you are hormone positive it doesn't work as well. Then I was told I was in the "gray" area regarding rads but, hey you need to do it in case. So again there you are doing something that might not even be of any benefit because the medical community has to abide by the rules and also cover their asses.
I asked the onc at the outset if I did absolutely nothing except the surgery, how long would it take for the cancer to come back assuming it would based on my stats regarding speed of growth. He said I would be in my eighties. So what did I gain by doing the chemo and rads? Maybe I damaged my lungs or my heart or both and I could kick it sooner than that anyway!! It's actually morbidly funny.
Kathy
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P.S. I'm going out to the kitchen right now to pour myself a nice glass of Cabernet.
K
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I didn't do the rads because the doc told me my heart would be in the radiation field. Also, I my lung would be slightly damaged and there was a possibility of rib breakage (due to my severe osteoporosis)
He was very up front about the negatives and positives and when I found out the difference was only 4 percent, I decided against it. He left the decision completely up to me which I really appreciated!
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If I had it to do over, I wouldn't have done the rads. I have told several recently diagnosed friends to take their time and do their research before making their decisions; not to make them based on fear, which is what I did. My mom had a mastectomy (lumpectomies weren't done routinely then) and no other treatment. She was 13 years post surgery when she died of a non-cancer related cause. I can't unring the bell, but I would definitely made decisions in hindsight.
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Smo23915 I am pretty certain I saw somewhere on these boards that some women on Tamoxifen were also taking the DIM and that it was improving the severity of their SE. I also read that there is a study currently underway of women who take Tamoxifen first and then DIM. I never took Tamoxifen so I don't know personally.
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To answer Sharon's question from the previous page: yes, my (integrative) onc actually recommended I take the DIM, along with numerous other supplements. I have been taking it for a little over 2 years now.
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What do you ladies know about taking DIM and letrozole at the same time? Would it be helpful or a bad idea? I want to take the DIM but too afraid to stop the letrozole. For now anyway. Thanks :-)
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didn't do the rads because the doc told me my heart would be in the radiation field.
Same here.
Heart and lungs- and I *already* have lung disease.
However, at MassGeneral, I looked into APBI ( accelerated partial breast irradiation) that is suppose to be much more targeted. Later, I discovered it was still experimental/clinical trial (NO, they had not told me yet and I did meet with rads dr.) and then I looked up the stats online and there were no rave reviews in terms of efficacy so I passed.
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I regret doing rads......rib pain, swelling, now lung and heart problems and mine was on right side.....
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Wow. Now I am scared that I had radiation on my right side. I have asthma and if that makes it worse, I'm sunk!
I am very ER+ & PR+ but I can't take Tamox. I have started DIM and my energy level is up, my sex drive is 'vroom, vroom,' LOL. My oily skin and hair are leveling out and I just feel better. Now I have to stick to two a day. I tried three and the results were, shall we say, 'explosive.' I am taking Zinc and Selenium and Resveratol. I haven't told my Onco/dr yet. She is not happy with me a.t. all. She wanted me to have an overectomy and I said, negative. I suffer from serious depression and the Ob/Gyn said it would have damaging effects on my quality of life. So, I am taking the supplements, hoping and praying, and taking the attitude that this was a fluke and this stuff ain't coming back.
**OT: I don't know if any of you watch "The Big C," but the series finale left me feeling peaceful instead of sad, although it was not a happy ending. I think quality of life is important and I pray to God that I NEVER have to go through this again. BTW: premenopausal with high estrogen levels. I am asking for blood work when I go back on the 31st to see if anything has changed with the supplements. Good luck to all of us. God bless!!!
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Well, I had radiation on the left, and with all these reports lately, it's got me wondering. But honestly, my heart is great and no lung problems to speak of, although anytime I cough lately, I'm wondering, is this some type of problem due to the rads? But it's been almost 5 years, so I think any bad effects would have shown up by now.
Glad to hear you didn't get pushed into the oophorectomy Della, and that you found something good that is also making you feel better. The way I understand DIM is that even if you have lots of estrogen, it will metabolize it down the "good" harmless pathway. If you don't mind my asking, what brand of DIM are you using?
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I think you would usually know shortly after the 6 weeks of rads if you became symptomatic ( short of breath etc )
It is more common to have issues if you have a PRE existing lung or heart condition.Try not to even worry about it, ladies. I have a feeling you'll be just fine!
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Mine started four weeks after rads..
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I had light coughing and shortness of breath during and for a short while after the rads, but I also have allergy related asthma and my rads were smack dab in the middle of allergy season, so it may have had nothing to do with the rads. I have been fine since. I think about it occasionally, but try not to worry about things that haven't happened yet. I have enough that has already happened to deal with. You can't unring a bell, so there's really no point. All I can do is take care of my body as best as I possibly can.
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del
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Mushrooms are awesome. You can incorporate them into lots of recipes. They are great on the grill, in salads, and in meatloaf, soups and gravies. I take a supplement when I don't eat them. I've never had any issues.
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Well I placed my order for DIM! Natures way bio whatever. Swanson had it for $18.99 so I got 2. 2 pills are 100mg. I didn't see any higjer doses but I know people are taking 300-400. I will just have to experiment I guess. Can't wait til it gets here. I also ordered collostrum with transfer factor. Been seeing a lot about how good it is so why not.
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Hi Ladies
I was just re reading my FEB 2013 issue of PREVENTION mag and came across a brief ' medical breakthrough" - not an ad, about a product called BreastDefend that claims to show promise, particularly for TNs. I looked it up online:
http://www.ncbi.nlm.nih.gov/pubmed/22842551Looks legit. Seems like DIM and curcumin etc .. may hold promise.
Just posting in case anyone wants to explore.
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I think there's a post called "has anyone tried breastdefend?" Where you can probably find info from people taking it. If I remember correctly a few people were.
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Wow Purple that is some pretty dramatic results! I was a little confused by the delivery method the way they described it.
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Yep. All those med terms making things murky, but they did say :"Oral application of BD..>" So put simply, I do believe they just took it in pill form , by mouth.
I would take it myself if not for my goiter. My BC has me in a world of Catch 22 's. Very ironic, but not so funny.
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That's what I figured but it also said gastric something, and I think it said 100mg/kg. That would be 5400 kg for me. Pretty pricey. I can't help but think there's a solution for the goiter problem and the bc that won't interfere with each other. Endocrinology I'd so complicated though. Years ago I emailed one of the endocrinologists at work to (stupidly) ask about bioidenticals. He told me I would have to talk to a gyn about hrt. Didn't even know what I was talking about.
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there's a solution for the goiter problem and the bc that won't interfere
Unfortunately, it gets complicated.
Currently, I have stopped my lymphedema treatments (manual lymphatic drainage aka MLD) because if a mysterious ' re\ash'- bright red area from neck to chest appearing overnight/ a few weeks ago. Drs thought it was allergies. I have been treated. The area remains pink. Finally, I resumed my MLD one night and it became quite red again. After lots of research, I am beginning to think it may be because of my goiter! Googling manual lymphatic drainage with goiter brought up somw concerning info. Quite possible that I stimulated the thyroid. Of course I can go and get levels checked, but who likes bloodwork with lymphedema?! It is like bumping into a stone wall everywhere I turn.
STILL have the rash- still missing my tx for LE (and BC for that matter!) .
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Rgriuff: I am taking NatureMade enhanced absorb. I am taking two; I have an appt with my onco on May 31 so we will see what new bloodwork says. Keep your fingers crossed and send a prayer my way.
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rgiuff
If you have no lung issues I would not think rads did that - ESP> 5 yrs later. I did get to know a woman here on the forum who had no lung issues and developed some from rads., BUT it was right after rads and took many months and meds to resolve, and now she is back to 100%.
If the cough persists for many many weeks or worsens, I would get it looked into- could be allergies, asthma or something else.
Hopefully, it will resolve on its own.
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Happy dance!! I received good news today! My cancer markers were good and my estradiol level dropped from 180 to 91. I have been on the DIM + for about a month! Boo yaaa!
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I don't get any hormone blood tests, wish i could, this is great info for you.....are you PR positive now?
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I am high in both ER and PR. I didn't even think to ask about the PR, but I'll call. I am just so happy because I can't take the anti-estrogen meds. I haven't had any night sweats either. I am just taking my happy where I can find it these days!
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You are giving me hope too! Can you tell me which DIM plus you are taking please?
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I am taking DIM + enhanced absorption, Nature's Way. Two hundred mg a day, and just moved up to three hundred a day. I am going to have my estradiol checked at the same time every month to see if I can get a baseline.
An OFF TOPIC: Have any of you had shingles since your diagnosis or before. I just found out I have them today--for the third time! My question is what can I take to help build up my immune system. I already take zinc, selenium, resvertrol, DIM, Vit B's, Collagen w/C. I have flaxseed too but don't take it too often. Any suggestions? I am going nuts with trying to figure out why I keep having these recurrences!
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Della
Can you gt the shot ? I know it is after the fact, but I have known ppl who got the shot and claimed it helped/never returned. Ask your DR (?)
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Add Liposomal vitamin C (not a brilliant taste) start with 5ml a day then build up to 10ml - 5 every 12 hours.....and Vitamin D3.....drink at least 4 pints of water every day......
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wow - i didnt know you could get shingles more than once. I had them about 4 years before my dx. I was lucky and got in to see a doctor within the 72hr period and was able to take rx. I could have sworn doc told me that it was a one time thing. hmmm In addition to what you take, I take Perilla Oil (omega 3). Its safer than fish oil. And I also take Colostrum. I also take 1000mg of Vit C and 5,000 Vit D daily. If you havent seen a naturopath, I would definitely suggest going to see one.
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Lily, what brand Lipisomal do you use?
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Della - I have had shingles three times also. Once 20 years ago, the second time was while I was recovering from a burst appendix (both of these were pre-diagnosis); the second was four months before I found the lump. The third time was a year and a half ago and was the least painful, I am assuming because I had the vaccine in between numbers two and three. My GP had no suggestions but felt that low immunity was not the whole story for recurrences of shingles. Have you had the vaccine?
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MY GP said if I hadn't built antibodies after having them three times, then the vaccine would probably not work, but I am willing to try anything. So far, they start out slow, no pain, but itch like crazy. Once I am on meds, things move right along. I assumed the first time I got them that it was because my immune system was compromised from the cancer; the second probably caused by the compromised immune system by surgery and rads. This time, who knows? We had some serious stress in dealing with an insurance company and buying a new truck. So maybe that caused it. I am frankly at a loss and willing to entertain any suggestions.
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Purple:
My neck and chest get very red when I have the manual lymph work. But I have very sensitive skin and I only have 1/2 a thyroid because I had a benign mass on it and had it removed. Could this encourage my thyroid to work more/better. I take Kelp. Shouldn't that keep down a goiter?
It is like a whirlwind of info on here and it's hard to sort it out. Also, one lady posted that she had an onco score of 18 and a recurrence score of 12%. How does that work?
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, then the vaccine would probably not work, but I am willing to try anything.
Della
I would strongly encourage you to try the shot ! I work with older ppl and know many who seem to have been helped by it. Remember- no needles on the affected side!
As for the thyroid, I am actually wondering if the MLD has been' bad' for my goiter. Drs are doing bloodwork now. I certainly used the lightest touch, but wonder if things were stimulated in the wrong way. Who knows ? Sorry I cannot be of more help. Do you have an endocrinolgist ? If not, I suggest you see one. Kelp, iodine and all of that really require bloodwork and close supervision from a very good endo dr. It is not a one size fits all or do it yourself thing- thats for certain.
I am no whiz at these percentages.
Try this :
http://www.lifemath.net/cancer/breastcancer/therapy/index.php
Good Luck !
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For immunity, maitake D-Fraction is very good and NAC is good.
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But do not take NAC if on nitroglycerin.
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Actually there has been some recent studies floating around lately that say the increase in the number of people getting shingles corresponds to the increase in the number of people getting the vaccine. Interesting. Some people are more susceptible to the virus. Once you've had shingles you can get them again and getting the vaccine will not help; just like the Hep vaccine will not help if you've already had hepatitis.
Shingles can be miserable, know. I hope you are feeling better soon.
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So anyone who has had measles can get shingles? Or is it chicken pox?. I've had both, but no shingles so far. You would think the cases would be fewer because younger people don't get measles and/or chicken pox as often nowadays (due to vaccines?)
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Shingles is related to chickenpox only. The vaccine has been modified so that you get a booster which may prevent shingles in people getting the newer vaccine. I don't think I even got a chickenpox vaccine because I got the disease. Additionally, the virus can "hide" for many years if you've had the disease....as can polio.
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I dont believe in vaccines, but thats a whole other discussion
Speaking of hepatitis - there is a recall on Organic Frozen berries from costco in the southwest - seems an outbreak of Hep A is linked to them......and I had been eating these berries since last june in my green smoothies. Every day, twice a day. So now Ive got to go to the doctor to get bloodwork. The symptoms for Hep A are similar to the SEs I attributed to the Aromasin I was on..... might be a coincidence? Really praying I dont have it......0 -
Shayne...i'm praying for you too.
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Thanks LorAll.......
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Shayne that is scary! I hope you did not get hepa! I don't believe in vaccines either and I'm worried they will make it mandatory at work next year. Going to try to use cancer as an excuse.
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ALWAYS use cancer as an excuse!!
Hey, we're owed something outta this disease! LOL0 -
I agree lol!
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I am not a vaccine lover either, however my first two bouts with shingles were horrifically painful. The shingles event after the vaccine was a breeze compared to the first two.
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From Mayo Clinic site
Factors that may increase your risk of developing shingles include:
- Age. Shingles is most common in people older than 50. The risk increases with age. Some experts estimate that half the people who live to the age of 85 will experience shingles at some point in their lives.
- Diseases. Diseases that weaken your immune system, such as HIV/AIDS and cancer, can increase your risk of shingles.
- Cancer treatments. Undergoing radiation or chemotherapy can lower your resistance to diseases and may trigger shingles.
- Medications. Drugs designed to prevent rejection of transplanted organs can increase your risk of shingles — as can prolonged use of steroids, such as prednisone.
The shingles vaccine is used only as a prevention strategy, however. It's not intended to treat people who currently have the disease. The vaccine contains live virus and should not be given to people who have weakened immune systems.
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My nephew thought he had bug bites which turned out to be chicken pox. Up until then I had no idea there was a vaccine. He had one but didn't get the booster. Silly me thought everyone was supposed to get chicken pox once in their life!
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I'm sort of on the fence when it comes to vaccines, but I am planning on getting a shingles shot next year when I turn 50. My father had had a bad case of shingles in his late 40s -- he died suddenly (just shy of his 51st birthday -- and I was only 7 myself) of a heart attack. While he had a known heart condition, I remember my mother speculating after he died that his shingles somehow taxed his heart (which of course may or may not be true). To be fair, this was over 40 years ago, so he probably would not have died so young from heart disease if today's advanced technologies were available back then.
That aside, I have known people who have had shingles, and the symptoms they describe are something I would love to avoid like the plague.
Another anecdote to share -- several months ago my oldest sister (age 55) was complaining of an itchy, painful sore spot on one side of her scalp, along with fatigue and body aches. I had just been reading about shingles, and I immediately suggested to her that she might have it. She was able to be seen by her doctor right away. It was not a confirmed case, but her doctor prescribed acyclovir (anti-viral rx). My sister's symptoms abated pretty quickly, probably because she was able to start the anti-viral med right away.
So moral of this story -- if you suspect shingles, get to a doctor ASAP for anti-viral medication (zovirax, valtrex). I know this is an alternative medicine forum, so of course also visit a practitioner for a remedy -- I'm not aware of a specific alternative treatment, but I'm sure they exist. Acupuncture would also likely be helpful for alleviating the symptoms, no matter which route you go (Western or alternative).
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I appreciate all suggestions, alt or not. I've heard horror stories about shingles too and how debilitating the pain from them can be.
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I think the window for the meds for shingles to be effective is 72hours. I was lucky, my doc is usually so booked up I cant get in for a few days.......
my case was mild. My doc told me to google it and see the more severe cases. It can cause brain issues if its on the face! I had no idea you could get it multiple times. scary!0 -
Just thought I'd mention an issue re Arimidex. Right after I finished rads I started on Arimidex. I began to notice that my ribs under where my breasts were removed (both) were very sore to the touch. I thought it probably was rads. However, since I stopped the Arimidex a couple of weeks ago I have noticed that the sorness is almost gone.
I know joint pain is a problem with Arimidex but having my ribcage bones so sore is odd.
Kathy
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chatsworthgirl, after rads I began tamoxifen and my ribs got sorer and sorer. In fact, the ribs on my left side now stick out a little more than the unradiated side and from time to time they are still sore. I think rads is the gift that keeps on giving in that way. But as long as I know it is normal, and my surgeon assures me it is, then I can live with that and not be worried it is something else - if you know what I mean.
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.
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I had pain in my armpit after the rads, but I don't know if it had to do with the rads or the meds I tried taking; maybe both, who knows? Either way, now I have pain just in the front from the surgical site itself.
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TRIAL for DIM or something LIKE DIM?
Broccoli Sprout Extract For Treating ER+ Breast Cancer Buffalo, NY 0 -
got shingles, 3rd time, first time since this trouble (& no, it hasn't been diagnosed). just took a hot bath with 8 shakes of the oregano oil (organic I think), did it once a few days ago. it works for awhile. also cleaning the side with witch hazel & appliing (slippery slope I know, patroleum bacitrans, hoping to starve the virus), but at least we (I ) know it's not necesarily from any chemical infusions
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Hi.
My Mom was diagnosed just before her 90th birthday with invasive ductal carcinoma in her right breast. It was a very tiny tumor and she had a lumpectomy at NY Presbyterian Hospital. No lymph nodes were affected. She had the surgery done exactly 2 weeks ago. Besides being a bit tired she is healing very well.
Pathology report thankfully came back showing clear margins. She will not need radiation. It is classified as stage 1. Here's the catch: her tumor was 95% estrogen positive and the oncologist is talking about putting her on a medication like Tamoxifen for 5 years to make sure the cancer does not return. My Mom has always been very holistic (followed Pritikin and before that health guru Adele Davis!) and does not want to go on a harsh medication at her age, especially one that may ruin her current great quality of life. She is very healthy and active and mentally with it. The doctor kind of made the comment that if the side effects were unbearable then she could stop. My Mom said I don't want the side effects to begin with! I would like to know if we should be fearful of going the natural route at her age? She really wants to, but I guess I grew up with the mentality, "listen to your doctor.
Feedback please!
Thanks a million.
Joy0 -
Hi.
My Mom was diagnosed just before her 90th birthday with invasive ductal carcinoma in her right breast. It was a very tiny tumor and she had a lumpectomy at NY Presbyterian Hospital. No lymph nodes were affected. She had the surgery done exactly 2 weeks ago. Besides being a bit tired she is healing very well.
Pathology report thankfully came back showing clear margins. She will not need radiation. It is classified as stage 1. Here's the catch: her tumor was 95% estrogen positive and the oncologist is talking about putting her on a medication like Tamoxifen for 5 years to make sure the cancer does not return. My Mom has always been very holistic (followed Pritikin and before that health guru Adele Davis!) and does not want to go on a harsh medication at her age, especially one that may ruin her current great quality of life. She is very healthy and active and mentally with it. The doctor kind of made the comment that if the side effects were unbearable then she could stop. My Mom said I don't want the side effects to begin with! I would like to know if we should be fearful of going the natural route at her age? She really wants to, but I guess I grew up with the mentality, "listen to your doctor.
Feedback please!
Thanks a million.
Joy0 -
There are natural approaches also, at her age she is likely to die from something else!! Look up indole 3 carbinol, DIM, juicing ......i would not take these at her age
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I would not want to do it if I was her. But it should be her decision---
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With a very small, stage 1 cancer, which is what I had also, I only took 3 years of tamoxifen, then refused to do AIs. But I was 47 at diagnosis, so I took it just to be on the safe side. If I were 90 years old, I'd easily decide to decline the tamoxifen without a second thought!
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Hello everyone, just wondering if anyone has any knowledge re: MILK THISLE
I use it to bring down my liver enzymes increased by arimidex and cholesterol medication.
I am a little confused about it's use and BC!
Thank you.
MENA
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I wouldnt do Tamox if I were 90, 80, or 70. No way. LIke others have stated, there are more natural ways to keep the estrogen down.......and how much estrogen DOES a 90 yr old woman have anyway? How about a hormones level test? On second thought, I think we can safely say her levels would be low....... Spare her the SEs she may have - minimal or otherwise. Sending lots of love to your mom and your family!
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I can't do AI's and have refused Tamox now, no way would I go on it at 90. Juicing, diet, DIM. I'd let her enjoy her life. She'll probably see 100!
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Lioness, Sounds like your mom has made up her mind which is nice these days as so many older people have descisions made for them. She has followed a hollistic lifestyle and probably wants to continue. Tell her my tumor was ER+ and after they did chemo I had estrogen levels of a 9 year old girl and I was 45. She wouldn't have a terrible amount at her age.
I was stage 3 with a 10 cm lump attached to chest wall. I eat pretty hollistic and exercise to keep estrogen tamped down even more as my weight makes a bit of estrogen as well as my ovaries probably produce a bit still. I did hormone therapy and mom is right. Side efffects are not a good quality of life. She can live years at stage 1
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Thanks to all of you gals who wrote in with advice and supportive words of wisdom. We will go the natural route and I have already started my research. This whole site has been a godsend for me and my family ever since Mom was diagnosed a few months ago. I appreciate you all and send prayers your way. Joy.
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Highly suggest seeing a naturopath, maybe one with experience in cancer. Seeing one was a wealth of info for me on supplements and diet changes!
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the oncologist is talking about putting her on a medication like Tamoxifen for 5 years to make sure the cancer d
CRAZY!
I say let her be.I work with seniors and know several in the 80s who had somple LX and done.
jmo
ASIDE: Dont know a 90 yr old who could handle chemo. They generally do not give it even for advanced cases let alone this .
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I am 77 and decided on a lumpectomy, no rads and no hormonals. The benefit for the rads was only like 3 percent and according to a Danish study, hormonals are not beneficial for women over 70. So after suffering thru very bad SEs I opted out of the hormonals.
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Yes dogsandjogs - i thought that was the universal idea - wondering why they are offering TX to this woman?
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It is my understanding that if the cancer returns, the hormonals will hopefully kill the cells. But when you are older, cancer grows more slowly so even if it did return it would be at least 7 to 8 years before a lump could be even detected.
Correct me if I'm wrong on this!
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I had shingles and the pain is something you can't explain. There are two things that when I think it could happen again I panic. They are shingles and poison ivy. Well I might add - cancer. My husband and family were amazed at how I handled the surgery and radiation. I really didn't have time to think because everything happened so fast. I have more of an issue now about the fear of it coming back. I know it could happen and I am not afraid of dying but it really seemed to take a lot out of me and I hope I don't have to go through it again. I also have pain in my armpit where they took the lymph nodes out. It hurt some but then I put my arm in a strain filing and I have had trouble every since. It is getting a little better. Not sure what I did.
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Claudia, it is nice to metz (!) you. Just remember, please give yourself a break. you didnt deserve this you did not create it, and you will get better. treatments including surgury can and will cause all kinds of other major and minor problems, and all we can do, is try to find and remember the joy and exuberance that we had at some parts of our lves, and try to create more of them. do as much as you can do, the things that give you a sense of inner joy, it really is the best medicine, and pi$$Es can(not)cer off. I am so completely sorry that you are experiencing shingles, i havent, but i do have the herpes simplex virus,thats bad enough, but i am sure shingles is x 100 worse. give yourself all the time in the world to heal. women carry so much of taking care of others that we begin to forget to take care of ourselves. Please. take rest and take hope that this too shall pass, please close your eyes, give yourself a hug, and rock yourself with a sweet gentle sway, and give yourself some loving. Please be carefull with your arm, can you see a therapist to see if you might have the begginings of lymphedema? it is nothing you did. we are just at risk for it.
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I have a PT for several other issues and when I go on Tuesday I am going to see if it is something she feels comfortable with. She is amazing.
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I take Myomin and DIM Plus (alternate every other day) - for estrogen positive bc - did not take any of the conventional medications.
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I went to the PT and she gave me two exercises to due for the pain under my arm where they took the lymph nodes out. She said if I didn't try to move the arm more my shoulder could freeze up. I have only been doing them for a couple of days but I do feel it is moving better. She did say to watch for lymphedema. She said it could start at any time and it doesn't always have to be severe. I have gotten more information from this site and her than any of my doctors. Last week for her working. I am really going to miss her.
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Where are we at with soy protein isolate? I love Balance/Zone Perfect bars and they fit with my current diet, which is resulting in weight loss.
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I love the Morning Star veggie burgers - they are low-fat, but very filling and delicious. No doubt there is soy in them - afraid to look!
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Yes - I like those too! Afraid to eat them
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Yes the Morning Star veggie burgers are soy. I loved them but haven't had them in 3 years! They do have a vegan veggie burger that doesn't have soy. I haven't tried it so can't say how it tastes.
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The BCO article on soy is very confusing and inconclusive, probably because that is where the science is at, unfortunately.
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Yes, that is the problem. And things change daily. I remember years ago when milk was advertised as "The Perfect Food" and every time we kids wanted water she would make us drink milk instead. Of course in those days there was no factory farming and cows were not injected with hormones and other things. My mother was vegan so we rarely got meat which I'm grateful for now as I can easily live without it. Not that fond of chicken either.
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Has anyone researched which DIM or DIM plus is the best? I know the quality of supplements and how they are manufactured really makes a difference in effectiveness....
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Hi all!
Regarding soy, and I do not remember where I read this, but my notes say to stay away from
Soy protein isolate
Soy protein concentrate
Soy flour
Soy fiber
Soy nuggets
Estrogen free:
Soybean oil
Soy lecithin
Soy sauce
If anyone has any information otherwise, please share! Thanks!0 -
deleted
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Thanks! I wonder why the difference?
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Like pretty much all processed foods we have here in the USA, soy has become a massed produced, over-processed, GMO'd filled mess. Soy in it's purest form is beneficial. However, that is not what we have here in most soy products. Veggie burgers, vegetarian and vegan meat look-a-likes, and other such foods are among the worst offenders.
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Good point. I forgot for a minute about our food supply...........lol
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what about miso, tempeh and tofu?
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lightandwind. From what I've read they are ok. I also eat edamame.
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My naturopath told me stay away from ANY processed soy. Edamame, tempeh are fine. I choose to stay away from all soy.
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Are miso and tofu soy products?
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Yes miso and tofu are soy products.
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You can't have tempeh if you have a mold allergy, which of course I do. :-(
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My Naturopathic Oncologist also told me to stay away from soy. Also, 90 years young and tamoxifen?? You have got to be shitting me. I told my Oncologist, who I love, that I know he wants me to die of something besides cancer and Tamoxifen and AI's are the only thing he's got for me to make sure that doesn't happen. I get it, I just can't bring myself to resume taking them again after I finally feel pretty much like myself again.
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How long have you been off of them? I have been taking a half dose - 10 mg. of Tamoxifen for about a month to try and ease into it. My feet hurt a bit but I sleep at night. I feel a bit anxious, depressed (life?) & get about 2-4 hot flashes during the day; I think it is doing something. I have had a hysterectomy but my tumor was 95% ER +. Docs have said that an anti-hormonal is really important for me for prevention of recurrence but even more so to prevent contralateral BC. I remember being off of them for a while tho'. It is nice to feel like yourself. Hoping my body adjusts.
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Both my integrative oncologist and naturopath have told me that recent studies show that moderate amounts of soy (2 servings per day) are protective. This includes (organic, non-GMO) soy milk and tofu. Miso & edamame ok, too. The only products they stressed to avoid were processed soy, like the stuff typically used in premade, supermarket veggie burgers, and any soy supplements. When I asked which was safer to put in my daily latte (which I am NOT giving up!), both concurred that soy milk was far preferable to commercial, non-organic milk.
There seems to be so much conflicting information on this-- very confusing!0 -
Hi everyone. I've become a Natural Girl from being a Complementary Girl due to quality of life issues. Tamoxifen was torquing my head and messing with my body too badly after 3 years, and I do not want to do the AI's because I am too much at risk for osteoporosis. Quality of life DOES matter to me.
So I am doing the following: DIM (from Smoky Mountain Naturals), Curcumin extract (from Jarrow), CoQ10 + LCarnitine liquid supplement, fish oil, good quality multivitamin supplement from Garden of Life, probiotics from ditto, Pilates/weight training, and healthy diet (not any special vegan or Mediterranean or whatever - just trying my best to eat decent not-too-processed, not-white-carbs food) and following an integral spiritual practice. I've also ordered a bottle of something called Chromium Polynicotinate which is supposed to help keep the weight off - very important in ER+ BC.
My Quality of Life has gone back up to pre-cancer days and I feel like myself again. I'm thinking about going to get a Master's in Social Work and if I do that I need all the brain cells and energy I can muster!
I've been steadily losing weight, firming up and sleeping so much better. I know how important losing weight and good sleep are to preventing BC from coming back. (And my doc was not going to keep prescribing me the ambien anyway. Ha.)Getting my sleep apnea diagnosed and treated also helped tremendously. I wasn't your "typical" apnea patient (that is, a fat middle-aged man) and I'm convinced that I've had it for some time. Sleep and BC are linked and I believe that undiagnosed apnea contributed to my BC diagnosis - but that's water under the bridge. I pushed and pushed for a sleep test, got diagnosed, got a machine, and now I'm getting actual sleep instead of the SEVERE apnea I was having. Now I just need magnesium and melatonin for sleep. Melatonin is a BC preventor anyway. And most people are deficient in magnesium. I take something called Iconic Fizz which tastes like raspberry lemonade as a pre-bed cocktail - yum!
Maybe if I were a mom, I'd want to keep going the full conventional route, side effects be damned. But I'm not, so right now I am choosing quality of life over the assurances (?) offered by Femara and the like. I know my onc is Not Going To Be Happy with me when I see him on Monday but that is the way it goes. As it stands now I am happy with the path I am choosing and glad to see other natural girls here. Much love and support to all of you.
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Hi QueenSansaStark,
I'm happy that you have a grip on your body and your life. I do not suffer from sleep apnea but my XDH did and it is a scary episode. I felt like he was on the brink of a heart attack or worse. I don't know if he still suffers b/c I sleep alone.
Did you take the tamox or AI for a good part of the time since you were DX'ed 6 years ago? I can't or won't do it. I believe it was a hormone inbalance that caused my BC to grow?? Just the thought of getting rid of the estro scares me. I'm trying to balance the hormones with DIM, calcium D glucerate, diet, and a herbal TEA from Dr Wong (chinese Herbalist) who has done EXTENSIVE RESEARCH on BC and hormones. He has 'cured' many w BC and other diseases. I do take alot more supps to support a healthy body as well as try to control enviornmenal estro that we are surrounded by. Need a bubble for protection. QOL is all I ask for too.
I just heard about the cromium polynic for lowering blood glucose, and some wieght loss is a real plus. Thats surely my next addition. I do take cromium picolinate and it DOES WORK, but I read somewhere that it will stop working.
Back To School......Good for you and good luck.
Maureen
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QueenSansaStark,
Are you a fan of Game of Thrones too? I love all the charicters but Aria Stark has my heart..and the IMP.
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My tumor was 90-100% positive and I tried AI's. Absolutely horrible. They have it listed as an allergy for me. I'm not taking Tamox. I do all I can to eat right and keep toxins out of my body by being very careful about lotions, perfumes, cleansers, etc. along with taking care of myself in general. There are still more survivors than deaths when you look at the odds, why can't I be one of the survivors? My MO still tells me I should take it and I stil say no.
I take after my mom, genetically speaking. She had a mastectomy and took no meds and lived 11 years until she died of a non-cancer related cause. She also had a blood clot, diverticulitis and pancreatitis. I have or have had all of the above. I'm not taking a medicine that will increase my chances of having a blood clot or any give me any of the horrible SE's the AI's did. I'm hoping the genetics stay in my favor. It's a calculated risk, but one I choose to make.
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Mini1,
I can so relate. I'm not going to take any med that is going to do more harm than good. Even without the s/e's it is damaging a female body that depends on estrogene for heart health bones and overall health. Unfortunatly your MO has nothing else to offer you in the medical scheme of things. A little support would be nice. I really like my MO but she is bound to the standard of care. She very carefully does a breast exam, for at least 10 minutes. The best part of our visit. I'm such a slut.lol...............xox
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I love a great breast exam too! Not only are they so relaxing - how nice to be touched and cared for! - but they are so reassuring!
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Breast exams NEED to be done monthly, right. I'm willing.
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By you, not a doctor. Only you know your breast and can feel when something isn't right. Both of my cancers were found by me. Before the biopsies I was told: "It is probably nothing", but I knew something wasn't right---
PS My former onc did horrible breast exams. Just a few squeezes here and there, didn't go deep, just skimmed the surface. I don't see him, because I'm not on a hormonal, but he sure did a very perfunctory job---maybe if I had been young and gorgeous he would have spent more time with the exams? LOL
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My MO tells me that all he can do is recommend what he thinks is best, but it's my body. He thinks I'm wrong of course, but to me the treatment is as bad, if not worse, than the disease.
My tumor was deep and not palpable when it was found. It was found in my mammogram. I do exams, but I don't know how much good it does. My MO does a cursory exam but unless it was really large, I doubt he'd find it.
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My breasts were always lumpy, bumpy, and bigger than they should have been. There was a 4cm lump at 9 o'clock close to the surface and very palpable for many years. With all the breast exams from gyno's and mammo's through the years no one ever showed concern or questioned it., so niether did I. It was never flagged on a mammo, at least 10. I'm sure it went from a fibro cyst to DCIS to invasive. It was 4.5cm when it was finally dx'ed, not much bigger than it started at 30 some years ago. All those exams failed my very obvious lump.WHY? I'll take the blame for not insisting on a Bx. Half my breast was cut out and the other reduced and now that I'm postmeno the lumps and bumps are gone and their not so familiar to me. My MO can proberbly feel a lump better than I can. She is very miticulas and thorough. If she let me see her monthly, I would.
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Chef...tell me more about the cromium picolinate...can this be taken while on metformin?
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yes you can take it with metformin but how low do you want to go??? The newest suppliment is cromium picnicitonate, its more effective than the cromium picolinate. (but I'm sure I mispelled it) I'll post the correct spelling as soon as I find it. sorry
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CHROMIUM POLYNICOTINATE. As per Dr Oz. Love that guy.
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Oh, so Chromium Polynicotinate instead of metformin? I, actually, do not care for Oz....LOL
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I don't think you should stop the metformin, but the chromium helps to stablise your BG, and helps with wieght lose ......So, IDK. Worth a try. My BG is fragile and usually out of control so it may be more benificial for me.
Again.........IDK
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I think I will wait and see how my BG reads for awhile...is the chromium bought online or RX?
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Good idea to wait?????
You can find it health food stores that sell supps or vitamin shops. NO rx required.
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Joellelee,
Can you share how your BG is doing?
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What is BG?
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What is BG please?
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BG===BLOOD GLUCOSE level
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I read that the risk is only 13 percent if you don't take a hormonal. That's pretty low---
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Thanks! I'll have to look at my last bloodwork to see if mine is in the normal range. Hopefully the internist would have said something if it wasn't?
So if your sugar is high you are at risk for diabetes, right? What else?
I crave sugar like crazy - not sure why---
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dogsandjogs
I would hope your internist would tell you if your BG was too high. I hope yours is in the normal range 80-95 I think?? I actually feel better when mine is in the 150 range. I never craved sugar till I became a diabetic. High BG is very bad for cancer b/c sugar feeds the cancer. sux when I'm eating sweets. "Take me now" if I can't indulge a little. If it is too high ask your dr for metformin. It comes in 500mg, 1000mg.
High BG is a sign of diabetes, nothing else.
xox
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Thanks Chef!
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You are welcome.
Now go an have a piece of pie.
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Ok, I will!
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Where did you find the 13 percent risk please?
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Dogs, the risk would depend greatly on type, grade and stage. For my particular cancer, the hormonal makes a big difference. It is hard to judge exactly how big of a difference, but it is significant. Even with all the treatment I have had, my risk of recurrence/mets is high.
According to cancer math, my risks are as follows:
With surgery and chemo, the death rate (15-yr) is 26%
With a hormonal added to the treatment, the death rate (15-yr) drops to 18%.
That means the hormonal offers a risk reduction of 8% (absolute) and if you do it relative the number is significantly higher obviously - about 30%. But that is given my particular stats.
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Yes, sorry for the confusion. One site says a 65 percent reduction for people who have NOT been diagnosed. But a lot of women don't want to take the hormonal due to risk of bone and heart problems. Then for a recurrence, it says 30 percent reduction, but then throws in a 13 percent and a 9 percent figure. It is confusing.
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Dogs, thanks for posting the link. The study was done on aromasin versus tamox, not on aromasin versus nothing. So what it says is that women on aromasin had a further 30% reduction in recurrence risk as compared to women on tamox. The 9% was the recurrence risk for the aromasin group, and the 13% was the recurrence risk for the tamox group. That is a reduction of 4% in absolute terms, and 30% in relative terms (4 as a percentage of 13).
It also says in there that for women, like me, with positive nodes (i.e. more advanced cancer), the advantage was even greater.
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Thanks Momine---I should have read it more closely.
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No problem.
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Hi, I have just finished 5 years of tamoxifen. I am 45 and still pre-meno. I am looking now for a more hollistic approach. Is there any website you can point me to for this as opposed to reading all the threads. I already take Melatonin and Curcumin.
Kosh
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I stopped Tamoxifen the end of October 2012. I really felt normal again in May and it just keeps getting better and better. My estrogen levels are coming down too. Don't know if that's from menopause or my diet and supplements or both, but it's trending in the right direction. My estrogen went from 241 in May to 71 in July. I'll take it!
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Congrats koshka1!! That is fantastic news! Here is the website of my Naturopathic Oncologist's office. She is Dr. Heather Paulson and she wrote this "booklet" : http://www.aznaturalhealth.com/health-tips/#
Click on the "cancer prevention" tips. She is writing a book that she hopes to complete in 2 years but these are some gems for all of us to incorporate into our cancer free lives!
I've never found a website for finding advice on what supplements to take, I'm just glad I found Dr. Paulson. She will do consults via Skype if anybody is every interested. Her dad died of cancer, and that's her inspiration. She is a terrific healer and a loving soul.
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del
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What is "DIM"? I've just had a left breast lumpectomy and am looking for alternative methods to prevent future episodes. I'm triple receptor positive.
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I have reading to do to catch up on then information on previous pages, but wanted to say I've joined the natural team. I decided 4 days ago to stop the tamoxifen. I took it for 13 months & was previously on femara for 12 months. The side effects of the tamoxifen are getting worse as time goes on. Feeling like I can't move without everything hurting is no way to live. At this rate I will be out on disability because I can't work anymore. My MO doesn't know yet, My next appt is in about a week. This was not easy decision but at the very least I'd like to take a holiday. My son is getting married in about a month & I would like to be able to move & not be so bloated. Thanks for letting me add my 2 cents, I'm off to do some reading.
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AI's were awful for me. A year later I still have some lingering SE's. I take DIM with no problem. I stay away from sugar. They use what is basically sugar water for PET scans because it goes right to the tumors. Stay away from refined sugars. Stevia and Xilitol (sp?) work well if you have to have sweetners. I have a serious sweet tooth and can say honestly that one you break yourself of the habit you will not crave it. 150-60 for BG is high. If it is consistantly that high, you should talk to your doc. I found out about my pancreatic issues when mine spiked like that. It is rare now that mine is over 80-85.
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momoschki - Soymilk is THE most processed soy product. I would not count that in the same group as edamame.......
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From what I understand about soy, it's the processed products (yes, like soymilk, also the "fake chicken" nuggets, etc.) that are bad. The Japanese eat fermented soy like tamari and miso. I also think the GMO, pesticides, and who-knows-what that is in much commercial soy is not good for us. And this processed soy is in a LOT of places we don't think to look (like vitamin pills, for instance).
So I won't drink soy milk or eat soy-based "fake chicken", but I will cook with soy sauce and have a bowl of miso at my favorite Japanese restaurant. The supplements I take don't have soy in them. I pay through the nose for them
and I wish I could have afforded them ten years ago, but that is water under the bridge.DIM = diindolymethane, I3C = indole-3-carbonyl. Google "DIM breast cancer" and you'll find it shows great promise and many women swear by it. You can get it off Amazon, or at the Vitamin Shoppe or Whole Foods. Start out slow - taking too much can cause headaches as I found out. DIM might also turn your pee a funny rusty color. Drink lots of water!
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Its so hard to avoid soy products. It seems to be in everything.I just ordered a bunch of supps and most have soy in them. My fault for not checking before I ordered. I opened one. I'll give to an unsuspecting friend.. w/o BC
I heard that all soy is now GMO??? Like our corn and even wheat. F@@king Monsanto. Did anyone see the news on the Ground Beef manufactured in a lab? Time to be a vegetarian, but don't eat the soy or corn or wheat........scarey.
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Just buy your meat from a local organic grassfed farm if you have one nearby?...I am lucky to live in Amish country!
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Queen is right on. Soy is like salmon. It's good if it's not farmed, bad if it isn't and most of it isn't. Miso and tempeh are OK. The rest is crap. I read labels carefully. It's in things that don't even need so they can say it's "healthy." You have to be careful. I use unsweetened almond milk if I need milk for something.
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Hi my name is Erica. I am hoping to get the name of your Naturopath. I live in Texas and I don't have a clue where to begin. I am 38 years old. My onco wants me to start chemo/tamoxifen in 3 weeks. I am panicked! My cancer is er+ pr- her2-low. I had a bilateral mastectomy a few weeks ago which I blew through with out any trouble and now I have the big decisions to make. I know beyond a shadow of a doubt that all the traditional treatments sound horrific!! I just do not know where to begin to find council on an alternative treatment plan. I am very overwhelmed and want to make the best choices for me and my family. I appreciate any information!! I was just diagnosed on 6-27-13. I feel like my life as I've known it has changed forever! But I don't want this change to be awful and scary! I just need information (wise counsel!) thank you so so much!! Erica
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EricaA what stage grade and type is the cancer? That makes a big difference to treatment planning
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