I don't want to take Tamoxifen. Anyone else out there?
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Hi ladies,
So, I switched to 10 mgs after 2 months on 20 mgs and am SO SO much happier. I felt so ancient on the 20mgs and after reading all the low dose tamoxifen articles, decided to switch to 10mgs. Basically, all the articles suggest lower doses can offer the some of the same benefits -- there is a minimum threshold at which the tamoxifen will work and anything extra just floats around your body. The problem is, they don't know what that minimum threshold is -- so they give Tamoxifen to everyone at the same dose. I mean, really someone who is 300lbs and someone who is 135lbs should not be taking the same dose, but we are.
Along with the low dose. I also started taking an aspirin a day (for cancer prevention -- see aspirin benefits) and biotin. I think my hair has stablized...less is falling out, though it is still thinner than it used to be. Thank god I had a lot of hair to begin with!
Well, I met with the oncologist and she insisted I go back to 20mgs. Asked me to try 10mgs in the AM and 10mgs in the PM. I don't want to do it, but I will give it another try for a week and see what happens.
I will say this = at 10mgs, I feel much more like myself with less hot/cold flashes, less moodiness and depression and a libido that is no longer non-existent.
I hope everyone here is doing well. Please give updates when you can.
Best,
GG
P.S. Using the BRAVA for reconstruction after the DIEP. I have to say, it is a horrible device so if anyone has experience with it, please let me know! Thanks!
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Very interesting, Gowanus! how are you doing now? the 20mg also makes me feel old and feeble.
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I had asked my oncologist about starting TX on LOW DOSE as I am medication and side effect sensitive to the max, he said it only comes in 20 mg.... I said to myself (really) i highly doubt that,,,,, so anyways - do you break your 20 mg in half or you actually have RX for a 10 mg?
I am 121 lbs, 5'6", thin bone structure, not really a good pill taker - and yes a 200 lb women would be ok on higher dose - they dose things based on women who weigh usually more like 160-175 lbs,,,
thanks
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I got mine in a 10 mg dose from the local pharmacy.
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Hello everyone. I feel I took a completely different path from most of the women on this site. Only time will tell if I made the right decision. My medical team (a leading surgeon and a leading oncologist in the UK) did not feel I was getting substantial benefit from Tamoxifen. I was just turning 35 when I was diagnosed with Grade 1, 7 mm BC. No lymph nodes involvement.
I took Tamo for 10 months then stopped as I wanted to try for a baby, and I had very bad mood swings while on Tamo. My medical team felt comfortable with my decision.
When I asked my oncologist about the worst prognosis for premenopausal women and which is often highlighted, he said 'that is a generality, not a universality'. He also told me that because I already have a good prognosis, the impact of Tamo on improving my survival is under 2%.
Anyway, cancer is such an unpredictable beast. I have to live with the fact - although I hate the idea - that there is no such a thing as black or white with cancer!
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are there any ladies on the forum who have recently met with Dr Wong and stopped taking the hormone therapy? If so, will you let me know how you are doing.I am seriously considering going natural.
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Hi
I have been on Dr. Wong's herbs for about two year. I am stage IIIa. I tried femara and tamoxifen with resultant side effects. Dr. Wong does prefer tamoxifen based on statistical evidence. Know that statistically not taking either the AI's or tamoxifen does increase the risk of cancer return. It is a personal choice all the way. Know also that his herbs are very pricey. About $200.00 for 20 days supply which is 40 premixed bags drinking the tea twice a day. I have only actually met with him twice but I contact him by email every month with any symptoms I may have or if I am doing fine. I,of course, visit my oncologist and my primary care doctor as scheduled. I also have visited an ND for added opinion. I know exactly my risk (based on statistical evidence) for doing this as my oncologist wants to make sure I am clear on what the cost of not taking these drugs are.
Good Luck
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hello..
I have just been diagnosed with ER/PR positive luminal b breast cancer ..
I was hoping it was not hormone positive so that I could escape tamoxifen .. I just turned 33 last month..
and I do not want to take tamoxifen .. I also don’t have kids yet ..
I’d like to know what’s your experience so far with tamoxifen .. what are the side effects like ? Weight gain? Effects on skin etc ? 😥
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Pana, I have not had bad experiences with Tamoxifen yet but everyone is different and has to make their own decisions based on their individual circumstances. Your bio is not public. If you made it available for us to see perhaps someone with stats close to yours could comment more.
If you are afraid to take it just because you are worried about side effects maybe you could try it and see how you react. If there are other personal reasons, then maybe you can discuss it with your doctor. There are other drug options but some people have side effects on those too. Depending your diagnosis and treatment plan you options may vary.0 -
Hi, everyone!! Alot of women are scared of taking Tamoxifen. That group included me, even with a pharmacy education. I had planned to take a different drug in the AI class, and had a oopherectomy/hysterectomy because I was going to have to shut my functioning ovaries down to take it. When mild osteopenia was found in my hip bone, I needed to try Tamoxifen. And do you what? The first few days were weird, but after that my body adjusted and I am doing better than I was before my diagnosis. I walk as much as possible, eat a healthy diet, work on fun projects, keep an upbeat attitude, socialize and live every, single, day of my life happily. If you have any questions, drop me a message.
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SeavieWLane wrote:
"Know that statistically not taking either the AI's or tamoxifen does increase the risk of cancer return."
It should be noted that taking anti-hormonal drugs or the newer aromatase inhibitors which have no long term followup, and therefore you are basically a guinea pig for the pharmaceutical industry, does not increase overall survival. Tamoxifen,at best, has been shown to delay recurrence. The end point of these studies is DFS (disease free survival) and the study length is less than 10 years. I wouldn't consider that a "cure." Anyone who says otherwise, is lying or is working for the pharmaceutical industry.
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I do not work in pharmaceuticals, but I did attend pharmacy school at the University of Arizona. I do alot of drug research, because of my background not my job. I do have a bias towards medicine, because of all my education, experience and research.
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The remark "Know that statistically not taking either the AI's or tamoxifen does increase the risk of cancer return" is not really an accurate statement, and is a bit misleading. The reason is that one's risk of recurrence does not "increase" if one refuses endocrine therapy.
However, in early stage (invasive) breast cancer, endocrine therapy drugs can potentially reduce the risks of distant (metastatic) recurrence and loco-regional recurrence, including the risk of same breast recurrence and the risks of new disease (in the same or contralateral breast), as compared to these risks with no endocrine therapy. They can also reduce the risk of mortality.
While the primary endpoint of many studies was often disease-free survival, assessments of overall survival or breast cancer mortality are available for Tamoxifen and for Aromatase Inhibitors. For example, in early stage (invasive) breast cancer, the placebo-controlled NSABP B-14 Tamoxifen trial included an overall survival endpoint: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(04)16981-X/abstract.
For more on reducing breast cancer mortality, see the EBCTCG (2011) meta-analysis of about five years of Tamoxifen versus placebo (no treatment) in early stage invasive breast cancer:
Main Page: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60993-8/abstract
PDF: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)60993-8.pdf
Supplementary Appendix: http://www.thelancet.com/cms/attachment/2001012705/2003807448/mmc1.pdf
Figure 5 presents data for recurrence (left) and for breast cancer mortality (right) at 15-years, both of which were significantly reduced.
Trials of various regimens containing an Aromatase Inhibitor have also assessed mortality. See for example, the EBCTCG (2015) meta-analysis of various aromatase inhibitor-containing regimens as compared with Tamoxifen:
Main Page: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)61074-1/fulltext
PDF: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)61074-1.pdf
Supplementary Appendix: http://www.thelancet.com/cms/attachment/2099018510/2078922311/mmc1.pdf
See Table (bottom) and related text in the Discussion section for information about risk reduction and reduction in 10-year breast cancer mortality rates.
When reviewing trials of various AI-containing regimens in early stage (invasive) breast cancer, it is important to understand that the comparator is not placeobo (no treatment), but is another endocrine therapy regimen (e.g., 5 years Tamoxifen). Therefore, any benefit observed is over and above that provided by the comparator regimen, which is itself substantial. For example, the authors comment: "5 years of an aromatase inhibitor reduces 10-year breast cancer mortality rates by about 15% compared with 5 years of tamoxifen, hence by about 40% (proportionately) compared with no endocrine treatment."
Keep in mind that risk estimates and related risk reduction benefits of different types may differ (e.g., recurrence versus mortality).
For individual Aromatase Inhibitors, long-term follow-up (after five years initial therapy) of a median of 9 or more years is now available. For example:
For Anastrozole, ATAC with median 120 month follow-up (10-years):
http://thelancet.com/journals/lanonc/article/PIIS1470-2045(10)70257-6/abstract
For Letrozole, BIG 1-98 with median 8.1 years follow-up:
http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(11)70270-4/fulltext
In addition, "IBCSG launched an observational, non-interventional long-term follow-up study (BIG 1-98 LTFU) to collect survival, disease status and adverse events for an additional 5 yrs," and preliminary results were published in an abstract for SABCS 2016 with 12 years median follow-up:
http://cancerres.aacrjournals.org/content/77/4_Supplement/P2-09-05
(Hopefully, this will be followed by a full-length publication in due course)
For Exemestane, TEAM with a median follow-up of 9·8 years:
http://www.thelancet.com/pdfs/journals/lanonc/PIIS1470-2045(17)30419-9.pdf
A feature in the ASCO Post indicates that overall survival data is included in the full-length version of the above publication.
By the way, when one speaks of a "risk reduction benefit" (e.g., in recurrence, in mortality, other), this means that a risk was reduced, but not entirely eliminated for all patients in the treatment group (a "cure"). Unfortunately, with ER+ disease, even after up to five years of endocrine therapy, there is some small continuing annual risk of distant recurrence as recently reported in a study focusing on years 5 to 20.
>>> Importantly, the risk reduction benefits of endocrine therapy are proportional to individual risk, so patients should seek case-specific advice from their medical oncologist regarding their potential risk after all other treatments, and the potential benefit(s) of any proposed endocrine therapy regimen as part of an individualized risk/benefit analysis.
BarredOwl
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Barred owl, thank you for sharing such comprehensive information. We need to have it on a top screen, so it is the first thing that newbies see. I really appreciate the amount of work that you do on the hormonal forum!!!
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BarredOwl - Ditto.
Michelle, your very well informed insights are always appreciated, too.
Whether we're speaking of Tamoxifen or the AIs it's vital to be specific to the drug (info on AIs should not be conflated with Tamoxifen) AND accurate.
For example, BarredOwl has provided links to long-term followup studies of each of the AIs (above). To state that "the newer aromatase inhibitors (which) have no long term followup" and that women are guinea pigs for the pharmaceutical industry it simply not accurate. For example, Femara was approved (after numerous years of clinical trials, remember) in 2004. Aromasin was approved in 2005. Anastrozole was approved in 2000. Yes, these drugs are newer (and generally more effective) than tamoxifen but they are hardly untested.
I certainly have my quarrels with the pharmaceutical industry. I'd also love to have better drugs. However, I appreciate that we have these drugs and the opportunity to use them. I hate to see other women scared away from even giving them an honest chance.
I think we ALL owe it to everyone who reads our posts to strive to be accurate.
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I agree with what you are saying, Hopeful. The bottom line is that we need long term studies - 20 years out on the some of the new medications. But, some people don't have that choice. Long before drugs are even approved, they go through comprehensive testing, and years of applications to the FDA for approval. Just like Tamoxifen, which was discovered in the 1960s as an unsuccessful method of contraception, took at least 20 years to make it an option for breast cancer patients.
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I'm with you. About to have DMX on dec 7 and I think that is all I will need. I also have endometriosis and from what I love read tamoxifen is not a good combination. So I would love to hear if there are other options
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When I used the online calculator given my stats (my age, Stage 1 cancer, low grade, etc.)..taking tamoxifen decreases my risk of recurrence by a miniscule amount. Am I really supposed to deal with the side effects and having something f** with my body like that, just to reduce my risk of recurrence from an already low percentage? No thanks. I'd rather look into serious lifestyle changes instead.
Reading this great book "What Your Doctor May Not Tell You About Breast Cancer." In the UK, they did a trial to see why ER+/PR+ women do better..live longer, etc..they discovered that Progesterone acts as a braking mechanism for the growth of ER+ tumors. They injected women with progesterone only and saw their tumors shrank significantly.
So why aren't doctors doing clinical trials HERE of treating women with progesterone? Hmmm..could it be the money incentive in prescribing meds that actually end up harming them?
I'm grateful nobody is gonna push me into chemo or rads, because I'm stage 1, no nodes...but even if I wasn't, I would think long and hard about taking a cure that actually comes close to killing the patient...so many people do chemo and die anyway.
I'd honestly rather have a shorter life with a higher quality, but I think according to the calculator I used, Tamoxifen would give me 1.5 extra yrs of survival. My cancer untreated (and that's without surgery or anything. I DID surgery and my dr got it all), shortens my life by 4 yrs. (from 32 years to 28 years..big whoop. I'm ok with dying at 78, honestly, if my QOL is good). Tamoxifen shortens THAT to 2.8 years. Big whoop.
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I was excited about the article, but after reading it ... not so much. They did not inject women with progesterone only. They used progesterone on cell lines grown in a lab and/or in mice.
It seems the consensus is that more research on combining Tamoxifen with progesterone may lead to better results.
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I believe I will be opting out of taking Tamoxifen. I am very concerned of side effects especially uterine cancer even if it is 0.000001%, that's just enough for me not to take it. I am to start radiation next week. Dr gave me the script already. I may take just to see if I have any side effects but will take slowly and cautiously. Just the thought of taking it is making me sick and with everything in my mind, heart, body, gut, being, instinct telling me not to take it.
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It's been a while since I've been on these boards, but just wanted to pop back in to wish you all the very best with your decisions. I remember being in your scary and stressful place years ago with the whole Yes or No to Tamoxifen issue. I don't recall there being too many people who would come back on here to say "Hi, I'm doing fine" after they opted out of Tamoxifen. Guess most are happy to be done with this community (no offense) assuming no further problems/treatments occur. But each of us will make the very best decision we can based on the information we have, so please consider my posting here as a paying it forward to the many many people who helped me on these boards.
As for me, Hi, I'm doing fine and never took Tamoxifen. I did meet with an oncologist after my radiation treatments were over, she was kind and frank, and left it up to me. I have always slept well with my decision; whatever you decide, it is important to have good inner peace and no regrets. I am now 52 years old and doing well and am happily still not yet in menopause. I am not advocating what you should do, just sharing my decision, it is important to be there for each other.
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CTMom, I am glad you are doing well, but want to point out that you had a minuscule amount of cancer compared to most and that is probably why your dr. left it up to you. Thanks for coming back and sharing your story.
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You are absolutely right, Peregrinelady. Each of us must make the best educated decision for ourselves, we each have our own medical situations and stresses and fears. Glad to be back and sharing my story, and wishing everyone here (myself included) good quality long futures.
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Coming back on here to pay it forward, so appreciative for those who were here for me when I needed guidance and support during my bc journey, and I was reminded of that when today I was private messaged by someone who somehow found my old post(s). I will be 55 years old on Monday. Ten years ago, I spent part of my 45th birthday on a radiation table getting zapped. I am a private person and suffered in silence but turned to these boards to help get me through this. So Happy 10 years to me, and wishing you all light at the end of this very scary tunnel and that you come back to provide comfort to others.
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