natural girls
Comments
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JoanDavies: One place you might go is breastcancerchoices.org. I am sure there are other women who are ER/PR+ who can be more help to you then myself. Good luck!
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MBJ...if one is triple negative, bio-identicals are ok to do overall. I would think so too. I am looking into this again, as I need the balance. You always have great info and enjoy your comments as everyone here!!! Goin to look up pregalone and what use it has.0
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JoanDavies- I feel like this is one of the most common questions people come here to ask- if you scroll back even a few pages you should find some info. But in brief, I and a few other people on here are doing supplements in place of tamox/AIs- the big 3 for me are DIM (concentrated version of cruciferous veggies), calcium d glucarate (eliminates bad estrogen) and Ground flax seed (smae as above, plus balances different estrogens). All can be got at a good health food store or online.
Plus exercise and diet. Lots of info that's easy to find about this!
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Question.... what are the blood tests that the Onc is supposed to do to test for cancer antibodies? I want to make sure that I'm getting these tests.
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Evebarry: I think I might be having one of those "stupid days", but what exactly are you looking for? If I were you I'd be in 9th heaven having your diagnosis,I guess it's all relative and having perspective...
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Samsue mine does a CEA and a CA27-29 each time.
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Samsue, My Onc. does the same tests as Sherryc every 3 months.
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DonnaDio: I was afraid to take pregnenolone at first--now I realize it's one of the more important additions to my overall hormonal health. It works great for chemo brain. It helps regulate cortisol production, gives your body DHEA only if it needs it and also gives you progesterone, only if it needs it. If your body doesn't need it, it just leaves the body. It's a win win for me. I have adrenal issues which means my body temp is all over the place. The pregnenolone helps keep my temp up in the more normal ranges. It also takes stress off of the adrenals.
Ladies, I found a new, good source of vitamins: SupplementClinic.com. I will start using some of their products starting next week. Just wanted to pass on the info.
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K, I'm not happy about being on Tamox but also feel like it is sort of an insurance policy of sorts....but still not thrilled (for several reasons...one being I keep having one of my blood clotting tests come back on the just out of range, low side....all the rest are normal, I've had 3 tests on that one particular one so far...same results each time...actually since on T is has gone down a few more points) I do have family history of heart disease (mother and father) and high blood pressure (father). My blood pressure is normal and my cholesterol levels, good and bad, have always been really good but still......
IF I stay on Tamox, maybe I'll just do 10mg which is all I am up to yet (reg dose is 20mg) and add DIM/I3C, Calcium d Glucarate. Was also thinking of adding Reishi and Kelp supplements.
My question is this, I have NO clue which is better, I3C or DIM and seems some take one or the other for various reasons. What do you think about taking one for one month and rotating to the other for the next month and so on?? Kind of getting the benefits of both and keeping the body guessing...or is that a bad thing?
I'm trying to stay away from mag stereate when I can and so the ones I'm looking at are Calc d Glucarate and I3C ...both from Thorne Labs. Reishi from Nature's Way. Dim from Olympian Labs.
Thanks...and if anyone has better sources for these I'd love to know!
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Also, just to note....I am taking Quercetin w Bromolain-not every day, Ubiquinol (100mg..was taking every day but have cut back to a few times a week), Vit D3 5000, Krill oil and just started on Floradix Iron (because my iron levels had become low and I couldn't handle the mammoth sized iron pills dr prescribed for me). I have Inositol/IP6 but don't take it often because it needs to be taken on an empty stomach. So does the Quercetin....so does the Floradix Iron.....hard to do that every day! Takes ALOT of planning and time. Feels crazy that I'm going to try to fit MORE supplements and I have a hard time with these.
(the 4 from the post above)0 -
FISH OIL QUESTION ???
I'm still not sure which is the best fish oil to take.
I'll be running out soon but right now I have some Mercola Krill and Solgar Wild Alaskan Salmon Oil...says it provides 2400 wild alaskan salmon, 200 IU D3 (I take 20,000 D3 per day) and 20 mcg of Astaxanthin
I cut one of these Alaskan Salmon capsules open and the capsule itself is REALLY thick.
Doe anyone know if I must take fish oil in the capsules or can I just cut them open and add them to a shake or just take it from a teaspoon ???
I'm trying to figure out a way to take fewer capsules....just seems silly to eat so many casings.
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MBJ.. would a saliva test deternine if I have DHEA/Coritsol issues. I am finally contacting vivre's Dr to set up a consutation regarding bio's etc. I am sure my adrenals and coritsol are the issues. Thanks!
Donna
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Sherry & Kira thanks for the information about the blood tests. I'm going to make sure that those are the one's I'm getting. And maybe have the PCP do them for me.
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Dear JoanDavies,
You've landed on a great thread...ask away! I stopped taking tamoxifen a few months in to it because I'd come off three major surgeries, 6 weeks of radiation, didn't like the side effects and felt my body needed to heal. My oncologist said that the clinical studies were based on "post menopausal" and since I was 38 they didn't reflect my patient population. (My second ovary was removed four months later and I still choose not to take it.) That was ten years ago.
I've mentioned in previous posts that I feel the strongest preventative measure I took was changing my diet and life style.
Best health always,
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Wow, I can't believe how much good info I'm getting here - almost overwhelming but in a good way. So which are the best fish oils? How do you determine who is the best herbologist or best seller of herbs to go to?
Also, EastCoast Girl, I guess you've done the research to find out how much iron is okay? I've heard high iron can fuel cancer (Dr. Keith Block's book, "Life Over Cancer" and I read it elsewhere. But don't know what is considered "high".0 -
Okay, please don't laugh. But do those of you who do your research feel that GNCs melatonin is okay? I see no fillers on the label and finally bought it along with their suntheanine because it is way less expensive than what I was paying for it elsewhere. I'm already spending more than I have for other herbs, my visits with my herbologist and lymphedema massage. And it is helping me sleep. So is there a way I can confirm if GNC's product is ok and if the quality is questionable, where else can I buy melatonin with suntheanine and or 5HTP that will not be more than $15 or so a month?
Thanks
Rachel
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Hi natural girls, just checking in to update you to where I am at. I had hope that when I said I was leaving for awhile that I would had moved on ... at least until screening in June. I was so ready. BUT...be as it may, due to four nodes taken out, I have complications that won't let me move on...at least not yet. After posting last on this thread, I developed cording from the arm pit to the elbow. The sentinal node fluid caused swelling under my armpit. It felt like a golf ball. It had to be drained. I have burning pain down my whole left side. I have a HUGE seroma in my sick breast. So, now, I am seeing a therapist once a week for eight weeks. I'm at risk for lymphedema. Since I knew bco had a lymphedema thread, I came back here for support and to learn from those ladies. I've learned that I can't garden, vacuum, or do any lifting for awhile. I have to do gentle stretches everyday. My physical therapist said that about 25% of women who have their axillary nodes removed struggle with lymphedema. About 2 to 5% who have their sentinal nodes struggle with lymphedema. You don't want to fall into those percentages. I am still mad at myself for not walking out of the hospital when I learned that the surgeon wanted to take out the lymph nodes. I had no idea four were coming out. I forgive the surgeon. She felt, what she was doing was right...it was "standard care" for any kind of invasive cancer. What happen to individual care? It's my fault, because I knew better. Now, I just pray that I don't get lymphedema. I read about a study of women, who all had early treatment for lymphedema. Sixteen of the eighteen recovered.
The thing is, your cancer journey may end, yet you could struggle with lymphedema the rest of your life...the reprecussions of cancer. It is especially aggrevating when removing the nodes weren't necessary. I think every woman before having their lymph nodes removed should read the threads on lymphedema. They need to know that at least they are risk. The surgeons don't tell you this. Women need to know!
So...you see, I'm a little upset that I can't quite move on. Physical activity is now on hold. I'm visiting the lymphedema thread almost everyday. I so feel for those women. I will NEVER allow another lymph node out again! And, I won't go to a doctor or a surgeon who won't partner with me.
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DonnaDio: From what I unerstand, for cortisol you do a few tests throughout the day to see where you are at and get a better view from the saliva. I haven't done this test before, because my dr. is doing the blood tests, however I read that saliva tests are better for this!
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evebarry: You are right, we are all at risk for lymphadema, although I think it's more the skill of the surgeon then the removal itself. Still, that said, I am very careful what I do with my MX side-no heavy lifting, overextending myself and allowing myself to do more then my arm can sustain, etc. PT really, really helped me, and though I didn't have cording it seemed to release all of the held in pain from the MX. I am hoping to have a bit more but I am still waiting for approval. My dr. only took 2 out and he only did this to be certain there wasn't any hiding cancer in me. I would hate to have those cancer cells released into my organs after going through chemo and surgery and recon just to start all over. My dr's were very clear about the risks but not all all dr's communicate this and yes, you are right, they should. I hope you do better and have less pain and I hope you find the help and suport that I have found here for the last year. Hugs!
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MBJ...have an appt for Monday with vvire's recommended Dr for balancing hormones. I am back in reading Breakthrough by Suzane Sommer and feel more educated!! I had been on bio-identicals in the past and know I need the balance and SLEEP!!! Thanks so much for info you share!
evebarry....i have not personally struggles with lymphadema.. , BUT know soooo many that have! As MBJ said, having the right PT person helps. I know, after my surgery, I had a PT who only worked with BC patients and was a survivor herself. IT made a difference in recovery and minimizing my chances of this for post op issues. I feel for you with the pain and this could help you!!! There are many in the forum with this issue and you are not alone!!!
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Evebarry-Get a rebounder! It is the best way to move the lymph. Even if you do not bounce high, gentle bouncing will move the lymph. The lymphatic system is not like the blood system. It has no pump. Lymph is moved by the opening and closing of valves and the help fo gravity. That is why rebounding does the trick. Nothing else has the impact of gravity like rebounding, unless of course you decide to take a ride on a rocket. I can totally understand why you are so mad. Have you considered legal action? All the new studies are recommending not removing lymph nodes. I just went through this with my aunt. She had positive nodes and they kept taking them out. I warned her before she went in to not allow them to do this, but she trusts her damn doctor, who I think is a quack. She is one of those people who will not listen to anyone except him. She did not even get a second opinion. She is in such bad shape already, I do not see how she is going to survive the chemo and radiation they are going to throw at her, full force. The whole business is such a farce.
If anyone has not seen it yet, I just posted a great movie on my website about the whole business. It really lays out the whole mess pretty well, except it has T Colin Campbell at the end who insists everyone needs to be vegans based on his china study. I prefer Dr. Gonzalez's thinking, that we all have different needs and there is no one size fits all.
Donna, remind me to give you some of my Usana melatonin. It is the best. They would not even make it until they could find a reliable source. It comes from Switzerland.
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Ladies, I have been doing much research and though I tend to run in the more alternative vein I also like to share my findings here with you. One of the things I keep stumbling across is the fact that my body temp seems to remain at a dangerously low level 95.5 sometimes! The lower my body temp the worse that I feel. I am learning how to "reset" my body temp back to 98.6, which in and of itself sounds a bit "way out" but for those of you interested, here is an article that not only sums up our cancer dilemma but shows a way out!
http://www.wellsphere.com/fibromyalgia-article/fibromyalgia-and-low-body-temperature/1295181
and another:
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MBJ - I read somewhere else about the importance of getting your body temperature where it should be, so thanks for the link.
I met with my onc today for my 6-week followup from the BMX and treatment rx. She was not happy at all that I stopped the Tamoxifen. She said that technically I was Stage 1 not Stage 0, because I had a tiny microinvasion that was discovered during the BMX, and that since I have an invasive cancer, Tam is the ONLY treatment for it. She didn't even offer any other options, and said that the risk of uterine cancer is only .2%, compared to an 11% risk of BC recurrence by taking the Tam (down from the 21% risk of recurrence if I don't take it). I"m not really sure I'm trusting all these statistics thrown at me. I do have an appointment with my gyn next week, and I'm going to talk to him about risks of uterine cancer. I'm still not going to take it yet...
I also met with a dietician. Since I already eat all the cruciferous veggies and dark fruits that supposedly "cure" cancer, I was a little skeptical about that meeting. However, she did give me some great information about the importance of Vitamin D (even more vital than VitC), which I had also read somewhere else. She wants me to take 6000IU of VitD for a few months to get my levels up (they are very low). She also suggested watching Dr. William Li's presentation on www.TED.com about how we can starve cancer by eating the right foods. (It's the stuff we seem to be doing anyway, but it's reassuring to know there are studies proving actual benefits.) The dietician also recommended getting a colonoscopy, because too often women beat BC and die of colon cancer. She said to get scans and tests as often as possible, because that's a great way to keep an eye on what's going on inside, rather than waiting until you start feeling pains (which typically means you're at a more aggressive stage of cancer and it might not be as treatable).
So, I don't feel guilty about stopping the Tam, even though I think that's what my onc was going for. I'm going to up the supplements and enjoy the healthy benefits of those veggies and fruits and hope they work their magic in eradicating any potential cancer cells that might be floating around. And if I see something that really convinces me that Tam is the way to go...I still have a prescription that I can fill.
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MBJ,
Thanks for the link on body temp. I am going to check it out. May I ask how you measured your body temp? I was doing the first a.m. urine and my temp was consistently low, but I was unsure if the urine perhaps was cooling down while it was being measured, etc. I averaged between 95-96 each and every day using urine.
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Marianne: The best is to get a really accurate thermometer first-I use the Vicks Digital--as many measure in celsius and convert to farenheit, they aren't as accurate. I do it orally and this one is fast. Another type is to get the "laser" gun type that you just point and shoot. You can find them on line for around $30-$50 but my Vicks works fine. I take mine before getting out of bed--you should be in the 97.4 range while sleeping and before rising, though this can vary some. I find that after I get up, drink a hot beverage, eat something, take my pregnenolone, shower and dress I finally get to 98.6. The problem is I can't seem to hold it there for any period of time. My temp really crashes at the end of the day. I try dressing warmer then I am comfortable to try and keep it up. If I eat anything that causes a sugar spike, then my temp drops really low. What seems to work best is eating every two hours. There is a support group on line http://bodytemp.eu/ that I have joined, too.0
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Vivre, I will definately get a rebounder...soon. That's a great idea. I'm not suing the surgeon. Actually, medically, she would win...as she did what was "standard care." Plus, she isn't a bad person...she seems sweet. I wouldn't do anything to hurt her. I will fight harder next time for what I feel is right. Right now, I just want to shout to women who haven't yet gone to surgery to do their homework before having their nodes removed. To, think for themselves. I am dismayed that so many are sheep led to slaughter. They have no idea of the risk of lymphedema. I am hoping it doesn't happen to me...right now, I'm a little scared about it.
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Eve - I know exactly how you feel. My surgeon found a microscopic cancer cell in one node and removed all of mine. I had no idea about what could happen during surgery. I did not do any research just trusted him. I was that sheep led to slaughter. I am right handed and of course it is my right arm that is now compromised. So far I have had a little bit of swelling in my hand if I overdo it. I live in constant worry about my arm. I do have some discomfort with it all the time. I do not wear my sleeve all the time just when I feel I need it. If I don't have my sleeve on I wear a medical alert bracelet. I have learned to accept that this is my new "normal". So hang in there it does get better! Get to a good lymphedema specialist. That will make you feel better!
Love, Patty
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MBJ- thanks for the info-- headed out to store this morning to buy a good thermometer.
Any of you ladies using glutathione? I was feeling a bit weak this week, so decided to take a whey protein shake, and I was researching the amino acids it had inside the shake. Mine had glutathione, and I read that it's good for cancer. I will most likely start having whey protein shakes 1-2 times a week, since my energy levels have been a bit low lately, and I am starting to suspect it has been a lack of protein. I get so sore after each and every workout (weight lifting classes at the gym) that I need something to get my strength up, I guess.
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Marianna, I can't comment on glutathione specifically, but feeling less sore after working out and more energetic would be pretty easy changes to notice. Also, someone here once mentioned the importance of choosing an organic whey protein, as non-organic ones might contain a concentrated dose of undesirable hormones. I rarely use any (forget to), so will be very interested to hear if you notice an improvement with it, as well as any brand recommendations from anyone.
Speaking of forgetting... is anyone here using any supplement (ginko, etc.) for improved brain function? I'm still dealing with annoying chemo-brain -- to the point of sometimes feeling clearly memory-challenged. I've been thinking about trying a memory boosting supplement, but also leery of inadvertently adding anything with a possible negative impact for bc survivors. Has anyone looked into this?
vivre, I'd like to know more about the Usana Melatonin. Is it 3 gr? Anything else in the formulation? Deanna
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Deanna: Are you on prognenolone? This helps my brain power and brings my body temp up! Alpha Lipoic Acid is good, too.
Marianne: I take L-glutathione daily 2 x 1000 mg as a supplement.
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