Tamoxifen Postmenopause?

[Hazelgreen]

I'd be interested in hearing from anyone who decided to try tamoxifen as a treatment for MBC because she had done well on it as an adjuvant therapy. I had been free of cancer since 2006 when I was diagnosed with extensive MBC last year (13 years later). I've now been on 40 mg of tamoxifen for almost a year with positive results. I soon will have a follow-up CT scan, and know my oncologist will want to start me on letrozole & palbociclib if the tumors have started growing again. I would rather try tamoxifen withdrawal, given other early studies showing it to have benefits. I don't like the idea of contributing to "Big Pharmacare" if I can avoid it. Tamoxifen, as a generic drug, is, by far, the least expensive option.

[Hidden]

Hi Hazelgreen -

Your post/situation is so interesting...I'd not heard of that option with tamoxifen. So I have no thoughts to share (so sorry!), but I'm eager to learn from what others might add...

Best,

Lynn

[Hazelgreen in reply to Hidden]

Thanks, LynnFish for your supportive comment! There are comments on this site about tamoxifen as a 2nd line treatment (see Related Posts top right).

It was my idea (after reading pre-2000 medical studies) to try "high-dose" tamoxifen. I'm thinking I'll go down to 20 mg, and then try 0 mg to see if those help me stay "progression-free". I've been looking at old papers that examined "the natural course of breast cancer" from ancient clinical records. It certainly seems women had to at least have breast lumps removed, but there always were a few who survived without any medical intervention. The main trouble is that all types of breast cancer are lumped together in these treatment trials so you really don't know which treatment works best for which type. Some cancers are very slow-growing but no one seems to be studying how to determine which is which.

[Hidden in reply to Hazelgreen]

Hazelgreen -

I have to admit that your response sent me googling re: "natural course..." and "high dose tamoxifen". Very interesting stuff...

...and I also have issues with some studies' set-up and then conclusions when they lump together different participants and reach some overall conclusion, when it seems clear that breaking things down along some relevant dimensions could very possibly show differences in outcome. E.g. a recently shared study "concluded" that removing the primary tumor provided no benefit, but if I remember correctly, it said that there was some benefit which was offset by adverse surgical outcomes...Okay, let's break that down by age, weight, overall health...i.e. low surgical risk vs. high surgical risk, and possibly offer people with low risk this potentially beneficial option?

I'm very intrigued by how your're going at this an doing some experiments w/ n=1=you! If it's not an imposition, would you mind sharing a bit more about your status/course of disease?

I also share a bit of your anti-big Pharma sentiment (e.g. greed), but at the same time am grateful for some of the treatments they've produced. Are you saying you'd do Ibrance if it were more affordable? (I think it's pretty well proven to work...) Are there co-pay or other programs that could reduce the cost to you? I'm not sure where you live, but I scanned your other posts and I think Canada? We have many members here from that (wonderful) country...Maybe they have some advice re; the expense?

Thanks for sharing your very interesting points of view...

Lynn

[Hazelgreen in reply to Hidden]

Hi Lynn, This site alone tells me that individuals vary enormously in terms of side effects to palbociclib. My limited understanding (I'm not a biologist) is that palbociclib is a targeted therapy for two protein-related genes (said to be on chromosomes 12 & 7) which may or may not have mutated to encourage tumor cell growth. I think it is ridiculous to give such an expensive drug to every MBC patient without knowing their genetic make-up. Since I live in Canada, my medical costs are covered by our provincial health plan. However, health care uses up more than a third of the entire provincial budget which means that there is much less for social assistance programs, etc. than there might be. My left-wing values tell me that it is simply wrong to contribute to this imbalance.

[Hidden in reply to Hazelgreen]

Hazelgreen -

I greatly admire your principled approach to things...truly. Reminds me of my Dad (89) who has refused to get his knees replace because he doesn't want to add to the national debt.

It sounds like you know more about the science behind Palbo than I do (or likely every could! My brain doesn't process that info well!), but I do hope someone with more medical knowledge chimes in if, by chance, they have a different take on it...

And, while I don't want to push back since I do believe that we should each go at this in whatever way we choose, let me mention one alternative scenario:

Since Palbo, on average, doubles the progression free survival time of whatever it's paired with, e.g. adds a year of life to Letrozole as a first line treatment, perhaps you'd consider taking the Palbo, holding your nose as you and your fellow citizens pay Pfizer executive bonuses and use that time to advocate for the social assistance programs you -- we both -- believe in? You could campaign for candidates, write letters, maybe even run for office ? It's possible that this would actually have a greater impact?

Just a thought. Whatever you do, I completely support (and admire) you...

Take care,

Lynn

[Hazelgreen in reply to Hidden]

Thanks for your reply, Lynn. Did you see my profile? I'm perhaps closer in age to your Dad than to you. The cost aside, the main problem for me with palbociclib is that there is no evidence (yet?) that it improves OS (overall survival), and it may ruin one's quality of life. Once I'm out of options with tamoxifen withdrawal, I'll likely try letrozole by itself and take the zometa injections ( if necessary, after I have a bone density scan done). I'm also willing to go out-of-province for gene typing (my oncologist just looked blank when I mentioned this to him) to see if there is a service to tell me which gene mutations I may or may not have.

I don't have another CT scan for a couple of months, but my oncologist has requested that I have blood work before our next telephone consult Sept. 9th. He's included measurement of CA 15-3 so I'll be interested to see if my level goes up (here, the normal range is considered to be below 30, and mine has been at 70).

[Hidden in reply to Hazelgreen]

Oh, one more thing...I would of course never recommend going "drug-free" with MBC, but if I survived a societal apocalypse (not unlikely in the US) and had no access to the meds, my best ideas for surviving BC without them would include lots of exercise, fasting, mostly or entirely plant-based diet, and lots of D3/K2 and sunshine.

My sister was also dx MBC almost 6 years ago, triple-negative (much worse prognosis) and she takes no meds because there aren't any available to her. After radiation on the original metastatic tumor (bone) and chemo at that time, followed by surgical removal, twice, of lung mets, she is currently NED (for about two years now?). She does like a slow run/fast walk for about an hour nearly every day, does basically intermittent fasting (I do it by design, for her it's her natural eating pattern), and eats a pescetarian diet, only locally caught fish.

These are the practices I've somehow landed on...there are others out there that you'll see on this board...and it's probably not one-size-fits-all. But I mention it in case you want to try to boost the non-pharma part of your "treatment"...

Good luck with it! Keep us posted!

[Hazelgreen in reply to Hidden]

Hi Lynn, What exactly does NED mean? I do agree that there is much that might be accomplished by following a healthy lifestyle. Omega-3 fats have been said to help heart patients. I'm lucky in that both my husband and I like fish so have it several times a week. We aren't much for fasting though, and I'm very self-indulgent regarding sweets.

[Hidden in reply to Hazelgreen]

NED = "no evidence of disease", aka NEAD = "no evidence of active disease", meaning your scans are "clear" but of course the cancer is still floating around, looking for someplace to take root again, you're still metastatic.

[hdhonda]

Dear Hazel,

I don't know anyone on 40 mg. of Tamoxifen. I am on Letrozole/Ibrance and so far it is working well. I am in my 41st month. You should talk to your oncologist and see what he/she thinks.

There are other options too. Hopefully, your scan will be great and a decision will not be necessary. Blessings Hannah

[Topood in reply to hdhonda]

I asked my doctor about 40 mg Tamoxifen but he said it wasn’t common practice...pooh.

[Hazelgreen in reply to Topood]

Your doctor is right that it is not common practice. Tamoxifen is a very cheap, generic drug so there is no advantage (in terms of perks from big drug companies) to physicians to study which patients need only it to survive. I'm hoping that ultimately there will be a movement towards genotyping of all breast cancer patients in order to match each to the best treatment in terms of side effects and overall survival.

[Hazelgreen in reply to hdhonda]

Dear Hannah, I don't know anyone else on 40 mg. either. I decided to try it based on a few old studies from the 1980's ( when tamoxifen was really all there was besides estrogen overdoses and chemo) that indicated more women benefited from 40 mg than 20 mg. Although the oncologists in the Cancer Centre here are supposed to work with patients on their preferred treatment, they are all pushing letrozole plus palbociclib which is in Phase 3 clinical trials in Canada.

I asked for a second opinion after I spoke with the first oncologist a year ago, and she kept repeating her recommendation rather than attempting to have an intelligent conversation with me. The current fellow showed excellent care skills on our first interview when he had a student in tow. Since then, he mostly keeps hoping that I will at least go back to the normal dose of tamoxifen. He is connected to the university here, but is clearly not a researcher. In order to attract physicians, the government here pays them high salaries without adding many conditions. My oncologist has referred me twice to a radiologist on staff who simply lists all the possible negative consequences of treatment and then states that I declined treatment. The radiologist's salary is listed as $477, 000! I don't think many patients here actually read medical research so I'm an anomaly.

[Bubbles001]

I took tamoxifen for 6 months after my first chemo because we weren’t sure if I was in menopause. Once that was confirmed, I switched to exemestane for three years until I had liver progression. I went back on tamoxifen but had a second opinion that I should be on Ibrance. I ended up with liver mets progression after three months and then switched to Ibrance (which didn’t work for me). From my perspective, if something is working, stick with it.

[Hazelgreen in reply to Bubbles001]

Thanks, Bubbles. I fully agree with your idea that one should stick with whatever seems to be working for you in terms of quality of life and survival.

[ERPRposHER2- in reply to Bubbles001]

Hi Bubbles001,Sorry go hear for hour progression when on Ibrance. What was your next treatment after ibrance?

[Hidden]

Hi Hazelgreen, I was on tamoxifen 20 mg initially after I had issues with arimidex. While it did stop the growth in bones, I had growth Of soft tissue masses near my spine. So they considered it “mixed results”.

I never thought to ask for a higher dose. I know with tamoxifen you have to be careful because it can be toxic to your liver. I had elevated liver enzymes until it was out of my system. So glad you are having success with it! Mandy

[Hazelgreen in reply to Hidden]

Hi Mandy, I should recheck the research, but my understanding is that tamoxifen can lead to blood clots (I take blood thinners after having open heart surgery two years ago). I think the AI's are more likely to cause liver damage...

[ERPRposHER2- in reply to Hidden]

Hi Mandy,Sorry to hear for your progression while on Tamoxifen.

What was your next treatment(s)?

[Hidden in reply to ERPRposHER2-]

After tamoxifen I got my ovaries removed and then started letrezole and ibrance. Have been doing well on that combo for a year now.

[Topood]

I loved taking tamoxifen...almost no side effects! But it was only partially successful in controlling the spread of my cancer....so I hope you go with whatever works best! I’m being switched to Faslodex and Afinitor.

[Hazelgreen in reply to Topood]

Lack of many side effects (except thinning hair, fatigue, etc.) is one good reason I prefer taking tamoxifen. However, whatever works in terms of overall survival is more important. Please keep us posted on your response to your new regime. Best wishes!

[8576]

I live in Canada also. Ontario. I think anyone can have your oncologist apply for receiving Ibrance free of charge from the drug company because of the virus.

I do understand the cost of drugs today especially cancer drugs, because of the cost of bringing them to market. Testing, trials, etc.

I have had the same feelings about taking these drugs because of cancer variations. I have requested a change in the plan and gotten a second opinion before proceeding. I even cancelled a biopsy on a nodule because it didn't make sense to me and then the oncologist called to say it wasn't necessary, two days after the scheduled biopsy. She didn't realize they had scheduled me very quickly and she was too late with her decision!

Having said that, I don't make decisions like that lightly. Normally I would proceed as advised however, the oncologist was very new and confused with blood results. She was totally in the dark on how to proceed in my case so I questioned everything she did. Half a year later she is getting better but still learning.

I agree with staying on a drug until you are sure it has stopped working. Sometimes they switch us up to quickly.

Quite the journey we are on. They say old age is not for the faint of heart. Well, Cancer is a real test of fortitude! There is a lot of help available so no one has to fight alone but still it is devastating.

Cheers, June S.

[Hazelgreen]

Hi June,

It's lovely to hear from a fellow Canadian. I'm originally from Ontario where I spent the first 40 years of my life and still have family. Your comment is the first I've heard that palbociclib can be had free of charge from the drug company. However, my understanding is that it is still in Phase 3 drug trials here, so that is a possible reason. I would have more sympathy with "big pharmacare" if the companies weren't at the top of the stock market. Covid 19 has likely not put a dent in their profits!

Do the oncologists in Ontario use OncotypeDX to measure the activity of 21 different genes known to be involved in cancer recurrence? It is mentioned on the BC Cancer website. I am going to ask my oncologist whether it is available in Saskatchewan. However, he looked so dumbfounded when I mentioned genetic testing to him before that I'll assume he doesn't know about it. It may not be that useful. The niece of a friend said that she'd had it done in 2015, and it told her that she had a 15% chance of recurrence. I was hoping for more info than that regarding possible treatment courses.

I like that expression, "Old age is not for the faint of heart"! However, "At my back, I always hear time's winged chariot hurrying near", and I wonder whether I'll ever get done the projects I have in the possibly limited time (and energy) I have left. I need to "gird my loins" and get on with it.

Thanks for your reply!

Cindy

[ERPRposHER2- in reply to Hazelgreen]

Hello Cindy,I read your post 11 moths after you posted it. In many comments you mention about genetic testing. What is it? Is that referring to BRCA1/BRCA2 testing? Or is it another type of biopsy? What is the possible outcome of it? Does it recommend “next best” treatment?

Thanks,

Plamen

[Hazelgreen in reply to ERPRposHER2-]

Hi Plamen,

I really know very little about genetic testing as I've not had it done. The one I mentioned that is available in BC, OncotypeDX, is for those with early breast cancer to see their likelihood of it returning. I've heard that genetic testing costs about $6000, but, in most cases, tells you very little if you don't have the famous mutations such as BRCA1/BRCA2 or Piquay(?). Otherwise, you may have genetic mutations that have never been studies so no one knows whether they impact on your cancer, or what the treatment for them should be.

Cheers,

Cindy

[Hazelgreen]

Hi Sandra, I'm glad that this common combination seems to be working for you! Please be aware that clinical trials per se (as opposed to basic research trials) are only conducted after a drug has been approved. I've not read a paper on the results of all the Paloma-3 trials, but I'll be looking for one.

If you are reading oncological treatment studies, I have a 2018 reference by Canadian researchers (first two are at Alberta universities) you may find of interest: "Hormone receptor-positive, HER-negative metastatic breast cancer: redrawing the lines." See Current Oncology, 2018 June; 25 (Suppl 1): S131-S141. You can find its 21 printable pages on the PubMed site. It focuses on the CDK 4/6 inhibitors in combination with endocrine therapy, and states, "However, combination therapy is associated with increased toxicity, which has to be considered when choosing the optimal therapy for each individual patient based on comorbidities, preferences , burden of disease, financial and social supports, and drug availability." Further, it indicates, "Endocrine monotherapy is still considered an effective treatment option, especially for patients whose disease course is more indolent (for example, a disease-free interval prolonged beyond 2 years)..." The article reviews the cost of palbociclib in Canada and refers to a Swiss study that indicates the drug is not cost-effective. The concluding statement is, "Lastly, the hope is that, in the genomic era, novel predictive biomarkers other than HRS and HER2 will be available to narrow the population of patients who will ultimately derive the greatest magnitude of benefit with the addition of the new targeted agents delivered on the backbone of hormonal therapy."

[Hazelgreen]

Best of wishes, Sandra! We each have to do whatever we think best in light of our personal limitations and situations. I don't presume to offer suggestions, just information based on online research. For your information, there is a basic genomic test offered in BC and Manitoba, not for MBC patients, but for early-stage BC to assess the likelihood of relapse. I mentioned it in an earlier post. Cheers, Cindy