natural girls
Comments
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Sherry, I'd started to write something to you about ILC and what sounds like a very negative doctor, but then did a quick search for pyeomorphic lobular cancer, and realized there's more to it than I was aware. In fact, it looks like MDAnderson has studied it, and I'm wondering if you've considered talking to them, or to another major institution or physician who has studied it in depth. It sounds like there are some differences between it and normal ILC, and like perhaps something many oncs may have never even seen or read much about. This sounds like a situation where you would want input from the top experts in the field, since it is quite rare. Deanna0
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Deanna- I don't know about Macs, but on my PC it has to do with enabling/disabling popups. On a different matter, as you are followed by what appear to be quite progressive inegrative oncologist, I was wondering what they think about Burzynski. I would love to know if you talk to them.
sherry- I grew up in Iowa City! I don't know about your specific BC. I think Deanna's advice to get second and third opinions is a good one. Many years ago I worked in the University Hospital system in Iowa City. At that time it was considered third in the country (after Johns Hopkins and Mayo). I even remember the Pope flying in for hand surgery! Perhaps someone there would be good to consult with? In the meantime, as you are trying to optimize your health, I can't recommend the book Anticancer-by Servan-Schreiber enough. He is a doctor who had cancer and a recurrence. After the recurrence he started researching like mad to try to figure out why his body was a "terrain that cancer grew in". He has lots of science-based advice on diet etc...Best of luck.
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Sherry.... I think the smartest thing you could do is read all 301 pages of this thread. There is so, so, so much info here.....it would just be impossible to shorten it.
I don't know anything about pyeomorphic lobular so don't know if you need all the ways of reducing your estradiol and estrone.
A lot of us here are really into D3, Melatonin, Curcumin/Tumeric, CoQ 10, Grape Seed Extract and about 40 others as you will see if you read this thread.
Organic, Organic, Organic.
Find the purest supplements you can.
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Boy oh boy, was going to try melatonin again (insomnia seems worse) and came across info today that it interferes with T4. Will have to research that too !
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Luan: Can you please post that article on melatonin? I understand it works by lowering your body temp so you can sleep but I am working on returning my body temp to 98.6 and taking melatonin seems to be interfering with this!
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MBJ, am on phone right now. What I came across today was thyroid info on you tube which mentioned the interference from different sources, one of them being melatonin, as well as calcium and iron. Tomorrow, i,ll google thyroid and melatonin and see what comes up
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Luan,
I eat sea weed everyday. They are little dried, seasoned sheets. I got a huge box at Costco;)
And I agree with Luna.... Go organic!!! And pure supplements are very important.0 -
Luan...let us know what you find
I was just researching since I take 20 to 25 mg melatonin per night thinking it is good as an aromatase inhibitor
Found a couple of references to T4 but they were a bit over my head and didn't sound like what you must have found.
So far, found conflicting reports on whether it raises HDL and lowers LDL or the reverse.
Also, found a report that says further research is needed but "they" think melatonin is protective against radiation.
My LDL has been consistently rising even though my HDL is slowly creeping up and I have dropped my triglycerides 300 points and have dropped my c reactive protein into the better than okay level. Sure hope it isn't the melatonin if I need that for the aromatase inhibiting aspect.
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corian68, I see you eat sea weed daily. I've seen the sheet in the store but had no idea what to ddo with them. How do you use them?
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Luan: Thank you so much for the post re: Melatonin!!! I posted a thread on here a few months back (fixlowbodytemp.com), and I finally out of frustration decided to do a body temperature reset because I was in so much physical pain and I was afraid if my body temp didn't come up my BC would just return. To make a long story short, I did the reset but I couldn't get my temp up until sometimes late in the afternoon and after resetting I also started having extreme night & day sweats. Turns out, after resetting the Melatonin was interfering with my body's natural sleep cycle and I no longer need it. Last night was the first time I didn't take Melatonin in years, and I slept like a baby, had no night sweats and I woke up positively zen this morning. My joints didn't ache as much this morning, either. I am really excited to see how I do now that I am off of it. The goal is to be at 98.6 F for most of the day. THANK YOU!!!
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Hi, MBJ, I'm really really glad you are feeling better sweetie. What do you mean by temperature resetting ? I know one of the sure signs of hypothyroidism is low body temperature in a.m. before rising. How do you take your temperature, mouth or armpit ? When I do take melatonin, my insomnia is worse, don't know...
Am glad I found this too, as I take a calcium/mag supplement and according to this link, calcium also interferes, don't know what I should do. I passed a bone scan last year with flying colours.
Here's the doctor on you tube:
http://www.youtube.com/watch?v=lZNFpke2u70&NR=1&feature=fvwp
I like him too, he refers to Frankin foods, LoL
http://www.youtube.com/watch?v=47ChsJuAnSo&feature=relmfu
OK, so I'm diving into google, see ya later, couac couac
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Hi Kira, I buy a mix of seaweed which are already "flaked" in the herb and spice section of my health food store and I add them at the same time as herbs to everything, soups, salads, vege drinks, mashed sweet potatoes. Don't know if you can get it where you live. It's called Bouquet de la mer.
Luna, will let you know what I come up with
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Thanks Luan, I was planning to visit them to see about iodine, so will check into that as an allternative. I so would rather use the real stuff.
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Ok, I just saw an endicronologist (a fertility specialist if I got the spelling wrong) at another hospital, and I don't know whether to laugh or cry. She kept cutting me off when I tried to explain WHY I am thinking about NOT taking Tamoxifen for 5 years, not even two..I prefer to write on this thread and in this topic, if I should go elsewhere please tell me so.
Anyway, I was thrilled about seeing her as she is a known specialist here in Paris, and my initial rendez-vous was much later this year. Her secretary called me yesterday and told me she had an unexpected opening and suggested I come see her today. I was hoping to talk about hormones, babies, the effect of chemo on fertility, Tamoxifen and its SE's, our beliefs regarding hormones and the alternatives to hormonal therapy, aswell as hearing that just because I don't have my period since a while (chemo induced) that I'm ok.
Apparently I am ok regarding fertility, although she said I should wait with having kids (duh!). One of the first words she spoke was Tamoxifen and didn't even ask for my opinion twice, and when I held my hand up and said hold on, she got quite unnerved. She took for granted that I' do Tamoxifen, it seemed unbelievable that I started asking questions about it.
I find it so hard to formulate what I want to say and HOW I want to say it (may have something to do with the fact that French isn't my mother tongue, although I speak more than fluently), but for that to happen someone has to atleast LISTEN! I felt so IGNORED!! I have read that many womens oncologists 'don't want to hear about it' when they suggest to lower doses of chemo and such, but not to listen to a patient, that's just rude. We maintained a polite tone, but cut the rendez-vous short, as we both understood that we didn't sing the same song; seemed to me she didn't even want to sing with me in the first place...
I am NOT an obstinate 16 year old who has an idea and won't let go of it. I didn't come across that way, but in the end I imagine she just saw me as an idiot. When I said that one of the oncologues at my clinic (a lady of Russian nationality that speaks her mind a tad too freely) let me understand that I was a fool not to take Tamoxifen (and didn't want to her my reasons either) the fertility expert said 'Well, I believe she's right'. Ok....nice one. Oh yeah, she also said that HRT does NOT cause cancer, didn't even 'help' it on the way, neither does the pill, she said that the pill didn't play around with hormones, 'Look at how many women who take them, do they have issues?' I know I did, that's why I stopped the pill after 10 years, and have far less problems nowadays my thank God!
If the genetic testing shows that my ER+/PR+ cancer is due to DNA or an organ/hormone anomaly I will reconsider. But I don't believe it is...Time will tell of course (appointment in October). She said 'Until you reconsider, I won't schedule anymore appointments'. The funny thing is that I didn't even feel angry or sad leaving her office, I bade good afternoon to everyone in the waiting room and left with a strange feeling, 'I'm on my own'. I believe those feelings are worse than those of anger and sadness. But, I'm not helpless, I will keep on researching so as to support my beliefs, having an open mind to the alternative side aswell as the medical with, fortunately, my husbands support. I want to know what I say no to of course, I wouldn't want the medical body or anyone else tell me I'm an idiot an actually BE one :-D
Do any of you have advice to give, I don't know; studies about Tamoxifen, similar experiences with doctors, anything? Or just a kind word to let me know that I'm not alone in this jungle of information and the truth about certain treatments...Thank you.
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Kira1234
Hi! The sheets I get are about 2" x 3". Little squares that are seasoned. I eat them like snack chips. Like Luan said you can also crumble them up and use for seasoning stuff. But I like to eat them whole...I am a snacker
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corian68, I'm a snacker too so that idea really sounds good. I like the idea of adding it to salads as well. I might just be able to hide it and get my husband to give it a try.
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Hi Carola, firstly, I think that if you are originally from the States, where patients are regarded more as "clients", then you would feel brushed-off by the attitude of doctors in France and in Canada. They are the sanctimonious know-it-all and better prima donnas. You cannot go into a doctor's office and request such and such or question too much or they take it personally and they don't like you....One has to be very compliant and approach them as if they were God impersonated. I should add though that the younger ones get it more. They readily accept the idea that patients take their health into their own hands and may have questions and offer solutions. I am sure that if I went to my onco and told him I was no longer following his recommendatiions that he would fire me as a patient. Plain and simple.
That being said, my own endocrinologist, a reallllll prima donna (because I was asking too many questions, he asked whoever had made me a doctor in a sarcastic tone) was not in favour of my taking Tamoxifen. His opinion of the drug is nothing short of disgust. I've read that Tamox interferes with the thyroid and he therefore follows me closely at 6 months intervals. So, in your case, being stage 2, are there not other alternatives to Tamox, especially if you are not ER/PR+ I mean to have thyroid problems caused by Tamox is not going to help your fertility
I hope this bit helped and maybe look for another doctor ?
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Carola30, I really understand how you're feeling. When I stopped chemo after my first treatment my original Onc. thought I had lost my mind. I would suggest you take your time to find someone who is more open to your views. In my case I had the support of by BS, my RD, and the new Onc. my BS sent me to.
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Luan, Am I to understand he didn't want you on Tamoxifen? What did he want you to take? I'm on Femara which I guess according to my Onc. brings our estrogen down the most off all the Al's. I've been on it 7 months, and must say I hate the stuff.
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Carola30
Oh good Lord girl! You are in the right place;) many women will chime in to help you. My experience was similar. My oncologist said my next step was Tamox and started to write the prescription. I said "wait, I need time to think about it." think about what? I explained that because I am premenopusal and have terrible issues with endometriosis, I needed more info. We went over other issues in my case & at the end of my appt.He looked at me amd asked, " are you going to take it or not? "
I said I guess not. He said I will give you 2 weeks by then you should know right? I agreed.
I did do my research and I have been slammed by one women on these boards ( not this thread) for what I am about to say...but it is truth. Tamoxifen is a known carcinogen. There are alternatives to blocking/ reducing estrogen naturally if that is needed.
The most important thing is to be informed amd do not let Dr.'s bully you into anything! It is your body. See another Dr if you can. If you want to learn more about alternative therapies, see a Naturalpathic Dr.
There are some women on this thread with the most valuable information!!
I am going the alternative route myself. I am starting DIM, PSK, & Myomin for my treatment. Along with all organic healthy diet. After doing research I feel it is best for me. Learn all you can, you'll know when it feels right.
Good luck Corian0 -
Carola ~ Your story about the French doctor reminded me of when my son was at school in Austria a few years ago and needed emergency surgery for a hernia. It never occured to him not to ask questions of the Austrian surgeon about the procedure (which he'd quickly read up on on-line, and had some firm preferences about) during a last-minute pre-op meeting, and the outcome was that he literally pulled out his own IV's and walked out of the hospital (with nurses yelling after him, "Where are you going?, and, "Will you be back?") because the surgeon was such a pompous a**, impatiently minimizing my son's questions and concerns to the point that he didn't want to deal with him. So I can absolutely picture what you just went through! So sorry!
But, sadly, I think that's the end result you're going to get almost anywhere when you question or dig for the net benefit of Tamoxifen to you personally -- short of maybe seeing a naturopathic doctor. US docs do at least listen to us, and in some cases even debate with us. But, the bottom line is, few, if any, conventional doctors are going to change their way of thinking or what they recommend based on anything other than trial statistics -- although, from my experience, some women docs are at least sensitive to our concerns. Thinking outside the box and taking a woman's full story into account, even in the US, is extremely uncommon.
So sorry for your frustrating experience, but, yes, until and unless you can find a naturopathic doctor to support you, we are still very much alone in challenging the status quo re. Tamoxifen and alternatives to it. And I think those of us on this thread have all felt that at one time or another, and still do to some degree. Deanna
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Kira, the endo asked me about AIs, but I am or was not menopausal when I began taking Tamox one year ago. The onco, at first, said 2 years of Tamox then AIs. Last time I saw him, he had revised his position and is now saying 5 years of Tamox then AIs. From what I read on the threads one is not better than the other as far as SEs are concerned...
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Luan, I'm finding more and more women with later stage BC being told to take something longer than 5 years. My pastors wife has been on them for 10 years. She was finally told she could stop them this year.
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MBJ and Luna, here is what I have found on melatonin and thyroid:
"These results show that melatonin has a thyroid function suppressing action, just the opposite to the actions of zinc"
http://www.sciencedirect.com/science/article/pii/S0300483X03004098
"Much evidence has been accumulated, suggesting an inhibitory action of melatonin on thyroid growth and secretion"
http://www.landesbioscience.com/curie/chapter/1440/
"A large experimental evidence exists suggesting the inhibitory action of melatonin on thyroid growth and function"
http://www.ncbi.nlm.nih.gov/pubmed/12019356
"melatonin could cause lowering of the human body temperature"
http://thyroidweightlossinfo.com/blog/side-effects-of-melatonin-supplements/
"The hypothalamic-pituitary-thyroid axis and melatonin in humans: Possible interactions in the control of body temperature
Body temperature is posi-tively correlated with FT4 serum levels in the morn-ing and negatively correlated with melatonin serum levels at night. Melatonin may infuence thermoregu-lation increasing vasodilation and peripheral heat loss and may also regulate thermogenesis [28-30] Thyroid hormones are photoperiod-dependent in animals [31] and an inhibitory action of the pineal gland on hypoth-alamic-pituitary-thyroid axis (with reduced thyroid re-sponse to TSH in the presence of elevated melatonin levels) has been evidenced in hamsters and rats and in vitro.
http://www.nel.edu/pdf_/25_5/NEL250504A06_Mazzoccoli_.pdf
Hope this helps !
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Luan, Well now I was thinking about using melatonin but I think I shall just avoid that suppliment. With an underactive thyroid I don't think it would be such a good idea. Thanks for the research.
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Thank you Kira, Corian, Deanna, Luan for your support. It really makes me feel less lonely, and reassures me that I'm not a ranting maniac :-D
As I read your messages I remembered why I quit the French University; you couldn't talk to the teachers, they thought they were Gods!! So I guess that goes for the medical body too....sigh!! I'm Swedish actually, and Sweden is different from France in so many ways; I appreciate French doctors and French care of course, but it's so different (the French don't pay for health care, but that shouldn't be a reason not to listen to patients or treat them like lowlives). Actually there was a Dutch woman (ecologist) on tv yesterday who claimed that France was the 'country of medication'. Like if you have an SE, well there's always a drug to counter it, and the patients enter this horrible squirrel wheel of medication...I'm happy to read that the patient-doctor contact seems to be 'easier' in the U.S! Deanna, those crazy Austrians! They seem very pompous about a lot of stuff, but I shall not generalize ;-)
I will absolutely reach out for other doctors, talk to naturopaths and continue my research. I have questioned my treatments alot (chemo...radiation...) and have chosen to go with them, but you know the feeling you can have in your gut, this really strong overwhelming one when you just know if something's right or wrong? Well, I get one of those when I read, talk and think about hormonal therapy. It just doesn't seem right for me. Tamoxifen IS a known carcinogen as you say Corian, yet another thing docs tend to ignore...:-/ Yep Deanna, I realized that today was only the beginning of all the narrow mindedness I will encounter regarding natural ways of staying healthy. I highly appreciate this thread and although it's hard to follow everything closely, it's well worth the hours spent on my computer!
Luan, I am ER+/PR+ to 80 and 65%, but as you say- it wasn't the most aggressive type of tumour I had (oh look, I'm already talking in past tense! It's not visible anymore thanks to chemo) so like Corian I'm more into the alternatives; Myomin & DIM, associated with the organic, healthy diet (I'm still excited everytime I go grocery shopping, trying to find new ideas and produce)! I see & feel how better nutrition has helped me already; food & herbs ARE a kind of medicine.
Wow Kira, you said no to chemo? Your onc must have gone bananas! Did you do this test where one can find out beforehand if chemo will help?
Thank you again ladies for sharing, have a delightful evening!
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I must say that Carola's comment really hit home with me. That was exactly what happened to me after my refusal to take Arimidex. I walked out of the oncs office over 3 years ago and have not been back since. She had no answers for me, so why waste my money? I then went to a chiro who started me on a nutrition program, checking my blood for deficiencies, etc. It was chiros that got me well. I have found through a lot of doctor shopping that they all have different fortes, so I have several. My chinese chiro is the guru of accupucnture and another does my thermography.
Which brings me to my experience at the Health Freedom expo. I spent a lot of time at political lectures. I know many of you hate this, but we cannot separate the two. One lawyer spoke about how US protocols are in jeopardy of being subjected to Codex guidelines. Can you imagine being told by the EU bureaucrats what is "allowed" in health care in the US. As Carola states, France has become incredibly dependent on drugs du jour. I know this first hand from working with French exchange students for many years. I cannot tell you how many of them were on RX drugs. As an American teacher, I would never take kids who are manic depressive or suicidal to a foreign country, but the French teachers did not seem to mind. I finally quit doing the program because they refused to screen their students after one of them went home an committed suicide. His American host family was devasted.
One of the things I always come away from the Health Freedom Expo is the feeling that we have got to fight for our rights while we still can. I am so sick and tired of the war between holistic and allopathic medicine. It is our bodies. WE should be allowed to hear the possibilities and make our own decisions. We have got to stand up for our rights to choose what is right for our own bodies. This lawyer is advocating for people like the parents of a young child who is being forced to take chemo against their wishes. This is just wrong!
One of the speakers there was Dr. Samuel Epstein. In his new book, he proclaims that the main reason we have so much cancer is the ACS and the CDC. He showed charts and statistics that show as we spend more and more for cancer, we get more cancer. Less than 4 % is going towards prevention. On his website, you will see his articles on tamoxifen being a carcinogen and how dangerous mammography is. He is from Chicago and I asked him why he thought my suburban county, which is beautiful and surrounded by forest preserves, has the second highest rate of breast cancer in the US. He asked me what my guess was. I told him it is just a theory, but since people in my county seem to be well educated and have good insurance, we get more mammograms. He said that seemed logical to him. We also have the Fermi Lab near us (where they did the tests to split atoms that led to the atomic bomb). All that atom smashing is doing something to our environment.
To make a long story short, there is a new party forming called thecanaryparty. It is kind of a teaparty movement for health. What is so interesting is that it is bringing people together from both the left and right. I will be writing more about this on my website as I plan to become very involved it in. Stay tuned.
PS I have lots of links to articles on the dangers of bc drugs archived on my website in the Breast Friends group.
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Carola30: I am ER/PR- but I found a wealth of info on breastcancerchoices.org and I suggest you go there and do some research.
Luan: I found out that you can retrain your body to operate at the right temp (fixlowbodytempl.com)-it's as if it has forgotten. This is common amoung women with triple neg BC-low body temp-and it's also common with anyone who has had chemo. Surgery can leave your body colder as can shocks to the body and medications like anti-depressants and yes, melatonin. I had to "reset" using pills and I am still in the process of doing so.
(re-posted from TN thread) This is what I think about body temperature and TN's: I think the reason excercise helps us is it can raise your body temp so the more you excercise the better you do. However, this isn't true for all of us. There are many ways to raise your temp but it takes alot of effort and being conscious of it and the benenfits are no more pain and brain fog. The dr's don't even take notice of this and just blow it off but the body works at it's optimal at 98.7 and none of us are operating at this temperature. My feeling is if we can just get our body temp up all of these SE's will go away and we will live a good long life. Sounds simplistic but my brain no longer works, I can barely walk and I can no longer use my hands at low body temps. I plan to fix mine because it's the only thing that has given me any hope.
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Does anyone know if the chemical danger of plastic water bottles that have gotten hot resolves once the bottle cools down? In other words, if you have a bottled water bottle that gets too hot and you dump the water out and let the bottle cool, can you refill and safely reuse the bottle? Obviously, it would be ideal to never have to use these, but they're almost impossible to avoid in our hot summer climate. Deanna
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Dear Carola30,
Can absolutely appreciate your story! My guess is that most of us landed on this thread because we are searching for our answers and we don't always subscribe to the typical "standard of care." Thankfully the first team of doctors suggested I get a second and even third opinion because I was 38 and the tumor was just shy of Stage II. (About the size of the tip of my pinky finger.) And, for that I am truly grateful because my path crossed with an oncologist that has always encouraged my "different" approach.
I took tamoxifen for less than four months and stopped because I didn't like how it made me feel. He said the studies were based on post menapousal women and he didn't see a significant statistical reason why I should continue since I was premenapousal when I had the cancer. So, I stopped. As the regular posters know, I believe that changing my diet has provided the biggest impact for preventing a recurrence.
You've landed in a great place. These ladies will offer wisdom and guidance. And...you know you! Believe that your questions will continue and you answers will come. In the meantime, I hope you find peace as you travel this journey.
Best health always,
Lisa
p.s. Remember the surgeon saying the tumor was slow growing and had probably been growing for 5-7 years. Strangely, I found that to be comforting. It provided a peace of mind that I didn't need to make quick decisions because for that day..I had time to digest the information.
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