Has anyone quit or reduced dosage of the hormonal therapy?
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Thanks for the feedback!
dtad - I agree. I think losing weight and exercise is the best cure. I am really thinking of not taking the femara. I haven't completely made up my mind yet.
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I've been on Tamoxifen for 5-6 years. Have had terrible weight gain issues. Dr wants me on til 2025 due to my getting BC at 41 but I think I'm going to ask my doc if I can go off. I feel like now, at 47, holding 30 extra pounds on me is worse for my health than staying on. We'll see
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dtad, I agree with you, it does seem counterintuitive to stay on a medicine that makes you unhealthy. I'm going to have a conversation with my MO about it at my next appt to see if I can get his blessing to go off of it. If not, I'll have to decide whether I want to go against his advice.
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Since I was 63 when diagnosed so long past menopause (although I had taken HRT for several years) I’m not planning to take an AI even though MO is pushing me to. She told me 6% Mets risk if I don’t take them vs 3% if I do. I took one (anastrozole) for a few months before my delayed surgery this past June and was already experiencing some unpleasant side effects. So I’m instead focusing on healthier eating and will increase exercise once I finish healing from the DIEP flap wound heacomplications. I think for my situation that’s best but if I was a good deal younger and/or was at higher risk % I’d likely try different ones to hopefully find something more tolerable.
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Abigail, what was your Oncotype score?
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weight gain is a concern and can definitely be contributor to other serious problems, some of the drugs might make it worse. It is a real struggle. Staying active and hydrated really helps - an activity you like. Is there any type of integrated approach where you are being teated? Any help with weight management. Right now I am doing ok, but have had problems in the past. Years ago, before cancer, I found a weight watchers at work very helpful. They tell you it is not a "diet", but it is. They tell you you are not counting calories, but you are. For me it helped, because they gave an easy system, and there was no "hit" list on foods you could not have anymore, but it did focus on what you should eat first/try to fill up on. It was convenient since it was luch time at work, each person had their own issues and strategies that worked for them. Each person set their own goals, setting goals was helpful for me.We had a very good group leader and spent most of the time laughing. The couple of times she had a substitute, I felt I would not have been as successful with the substitute, too serious.
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@Peregrinelady - oncotype in left was 6 and oncotype in right was 11 - had ILC in left and IDC in right.
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Abigail, great that you got low scores, but please remember that the results are based on taking the antihormonals.
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I got permission from my oncologist to go off of Tamoxifen for 2-4 weeks to see if I can lose some of this trapped weight. I've been on 5.5 years but they want me to go through full 10. So, we'll see if I can get some weight to budge and what happens when I go back on.Fingers crossed.
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What just happened...good luck talking to your doctor! Most docs will not condone going off anti hormone therapy because that's all they know! Ultimately it's our decision and I'm not saying it's an easy one!
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dtad, I think most docs will not condone going off anti-hormone therapy because they know that it reduces the number of recurrences, reduces the number of new primary cancers, and saves lives. I think most docs encourage their patients to go onto and stay on anti-hormone therapy because it improves their prognosis.
That said, yes, there are some docs who recommend these meds and pressure their patients to stay on them because it's all they know, and they persist with these recommendations even when the individual's recurrence risk is low and the benefit they receive from anti-hormone therapy hardly (if at all) outweighs the risks from these meds. I would hope those docs are in the minority. Over the years I've had 3 MOs (due to retirement and substitution) and from my discussions with them, I know that at least 2, if not all 3, would fully agree with low risk patients going off anti-hormone therapy if the side effects significantly impacted quality of life or created new health risks.
When looking at going off anti-hormone therapy, the questions for the patient and the MO are:
- What are the risks of recurrence (metastatic and local - 2 distinctly different risks) without these meds?
- How much are these risks reduced by taking anti-hormone therapy?
- Based on the patient's health profile and experience (if they have already been taking the meds), what is the nature and risk of side effects and quality of life issues?
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That's the discussion every MO should have with any patient questioning whether to go onto, or continue on, anti-hormone therapy. Like almost everything else related to breast cancer, there is no 'one size fits all' answer.
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@dtad - totally agree with what you said about the orthodoxy of most MOs and this being a difficult decision.
@Peregrinelady - the figures my MO gave me did take into account the oncotype scores - she said mets risk is 3% if I do take the AIs and 6% if I don't. So based on that and my personal situation (brief unpleasant experience with AIs earlier this year, my age, general health, etc.) I decided against AIs for now.
I do plan to look for an MO that takes an integrative approach more so than the one I was assigned by the hospital (Weil Cornell in NYC). I plan to create a new topic to ask or any such recommendations. Does anyone on this thread know of any in the NYC area?
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Beesie, those are good questions to go over the next time I see my MO. I am beyond frustrated and feel like I'm between a rock and a hard place. If my recurrence risk was super low it would be a no-brainer. I'd go off the anastrozole tomorrow. But that 20%-ish risk of recurrence without an AI is still a bit high for my taste. The cancermath tool puts it even higher, at about 29%. Like JRNJ, I am concerned about the limited data on how ILC and positive nodes affect Oncotype.
But...I am frankly a mess right now. I cannot stay on this medicine and keep my general health in check at the same time. I take ibuprofen every night to calm my muscle and joint pain but still get barely any sleep because of the insomnia. I hobble over to the elliptical hoping exercise will make things better but it just uses up what little bit of energy I had. My list of ailments, doctors, procedures, and supplements keeps growing. I don't think I can keep doing this for the next 5 to 10 years. I am normally a very positive and laid back person but this is hard!
This is a tough decision for all of you other ladies who have to make it. This is coming from a person who can't even make a decision on what kind of washing machine to buy. My doctor obviously wants me to stay on the anastrozole, and my husband thinks I should quit taking it because he doesn't like what it's doing to me. I think I'll just use eenie-meeni-minie-moe.
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Whatjusthappened, I'm still struggling, in pain too. I found some relief from headaches and insomnia (but I also take lunesta) when I switched from Aromosin to Arimidex. But the hand and arm and foot pain and numbness got significantly worse after ovary removal. I keep rolling over in bed at night from the pain. I'm an Engineer, so I should like numbers and calculations, but I don't believe any of them. Maybe because I'm an Engineer and see how much error and assumptions go into calculations. I feel like I'll never know if I had additional affected nodes because my surgeon refused to do an ALND. According to MS Sloan calculator I have a 17% chance of additional node involvement, which would change every other assumption, calculation, treatment, etc..... So I feel like if I quit, I'll be freaked out about reoccurance, and if i don't I'll be miserable. I'm taking daily now, because every other day didn't make a difference. I've stopped the million supplements that weren't working and am trying celebrex and cbd. Not really helping either.
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@Beesie - Great info. Thank you for posting those questions to ask the MO. I will be using those as a guide when I see my second oncologist next month. My current MO could not answer these questions, just saying "it's complicated" and basically dismissing me completely after I quit Lupron. I know I am high risk due to my age, so that's why she's disappointed in me quitting that. However, I am suffering due to these drugs and need someone to discuss other options with me, if there are any.
The more I think about this and the more I read, I think it is Tamoxifen that is the culprit for my recurrent anal fissure problem. It all began when I started Tamoxifen last October and has gotten progressively worse (despite having surgery for the fissures in June). It got even worse when I started Lupron, which I quit last month. I just couldn't take it anymore. I was doing so well before starting it! Then everything just collapsed around me.
I am scared of stopping Tamoxifen. I do not want to risk the cancer coming back. But I do not know what else to do. It is not an easy decision. I am there with you all thinking of quitting and hope you make the best decision for yourselves. I will be seeking a second oncologist's opinion since my current oncologist has no sympathy for me and my horrible quality of life issues. She doesn't want to work with me, so I am finding someone else. Ultimately, though, it is a decision I have to make whether I want to continue this or not. My quality of life is awful and I cannot see myself continuing this for 5-10 years. I cannot enjoy my life anymore and would honestly rather just die than continue to live like this. It's harsh, but that's how I feel.
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peridot180, I'm so sorry that you're dealing with such harsh side effects, especially at your young age. It sounds like your MO is a bad fit to the say the least, and I hope you find a more sympathetic one. I understand where you're coming from and have had similar thoughts from time to time, but that's no way to live. My heart goes out to you.
JRNJ, I notice a difference between the days I take anastrozole and the days I don't. The hot flashes are there every day but definitely more intense on the days I take it. I also sleep a little better on the days I don't take it. The joint pain is there regardless and never goes away. I ordered some curcumin to try since some members here have recommended it, but don't have my hopes up. Do let me know if you find something that works. I have thought about the CBD oil but am hesitant due to what I've read about it possibly affecting your metabolism of other drugs. It's disappointing that it didn't work for you.
I don't feel like the current calculators are comprehensive enough to give an accurate risk number. I just have to settle for the knowledge that my recurrence risk is a little too high. Is the MS Sloan calculator one that you ran or that your doctor ran? I'm not familiar with that one.
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Bessie...I never questioned their validity but IMO most docs aren't really concerned about how so many women have poor QOL while on them. When I was first diagnosed and asked my oncologist about the side effects of aromatase inhibitors she said there weren't any! She was a top MO at a major NYC university hospital. I believe that if more docs would have an open and honest discussion about them then maybe the compliance rate would be better than 50 percent! I also do not think there are many docs, especially MOs that would advise that weight loss and exercise reduces recurrence rates by almost the same rate as anti hormone therapy. It's not something they are taught in medical school. That is why I previously made the comment that it's all they know. Good luck to all navigating this complicated disease.
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dtat, it seems that you are generalizing based on your own experience. And you are interpreting your experience in one way, when there might be much more to it.
I could do the same. One of my MO's research interests is the side effects of cancer treatments. He teaches as well - so his students will certainly be taught in medical school about side effects - and his treatment recommendations consider both the patient's risk level and the risk of side effects. This was my second MO. My first MO, 15 years ago, recommended against Tamoxifen for me because my risk was low and he didn't think it warranted the side effects. He was an older doctor who had taught pretty much every other MO who came through that department. And while I was never advised on weight loss (my weight is just fine), I have certainly been advised about the benefit of exercise.
So if I generalized based on my experience, I would say the opposite of what you say. But I realize that my experience is not the norm, just as hopefully your experience is not the norm. Many docs are concerned about side effects and upon seeing their patients, immediately ask how they are tolerating their meds. The disconnect comes with the fact that these meds are prescribed to prevent the development of a fatal disease, metastatic breast cancer, and many of the side effects that we are talking about are quality-of-life. It's not that QOL side effects aren't important, but what to do is a dilemma when QOL side effects are balanced up against a significant risk of mets. I think for most doctors, it's a lot more complicated than just being unwilling to consider side effects or not being knowledgeable about them.
Look at the situations that peridot and Whatjusthappened find themselves in. Their side effects are intolerable but stopping these meds would certainly increase their risk of mets. It's not easy for them and it's not easy for their doctors.
I do agree that there are doctors (too many of them) who don't adequately discuss side effects - maybe because they don't know about them but more likely because they don't know what to do about them, so the discussion opens a can of worms. Maybe some decide that playing ignorant is the best strategy. As patients I think we'd all agree that's a dumb strategy. But I think it's not as simple as saying that's all they know. The real problem, I think, is that while the side effects are very well known, we don't have answers on how to mitigate the side effects.
I just went to the Clinical Trial database, input "Breast Cancer" and "Endocrine Therapy Side Effects" and came up with 409 studies. I then added one word into the search, "Prevention" and that narrowed the list to 14 studies. And therein lies the problem.
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Hello again. I had to take a step back since I got surprising news on Thursday. I had a left mastectomy and no cancer in my lymph nodes. ER/PR+ HER2- but the tumor was 2.3 so I did end up being stage 2A. However my Mammaprint came back high risk and my blood tumor market was elevated - not too bad 44 and the high normal is 38. So oncologist ordered a PET scan 10/14 and then meeting with me but right now she is recommending chemo taxotere/cytoxan for 4 cycles and femara hormone therapy. At first I was against hormone therapy and thought losing weight would be better outcome and was afraid femara would make it hard to lose weight. I am 60 and postmenopausal. Now I am reconsidering everything. I won't get the PET scan results until 10/22 since there are no appointments until then for her. They are calling me if there is a cancellation but I'm not holding my breath. She is recommending AI therapy even more than chemo.
I am like dtad I think exercise and healthy eating and losing weight would be the best thing to prevent a recurrence but who knows at this point. I wish I had an oncotype so I would know the number and where I am in the range. The mammaprint just says high or low risk. 30% chance of recurrence in 10 years. I am waiting to see the actual report - they won't scan it to me - confidentiality so I have to go pick up a copy or wait.
I am still researching and thinking with my husband but we are leaning towards chemo and trying the femara and she will switch me if those side effects are bad.
Not something I thought I would be thinking about - I thought I would have a mastectomy with expander and get fills, get the exchange surgery and be done with cancer. But I learned it isn't so easy.
Beesie and all - I appreciate reading every one stories.
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I really appreciate everyone weighing in on this issue- it really helps to see everyone's different perspectives. I do have an MO who is sensitive to QOL issues, so I can see that I am fortunate in that.
Beesie, you nailed it when you mentioned the lack of focus on preventing side effects. Some of those side effects are not just about QOL, but are downright dangerous. I think that some MO's get so focused on preventing the return of the cancer (which is their job, after all) that they fail to see the bigger picture of the health of the patient. That part is up to the patient. I hope science brings us some better options soon.
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Marie, you and I were posting at the same time. I'm sorry about the unpleasant surprise. Your situation is exactly what I was referring to when I was writing about how complicated this decision is. Someone with a small Stage IA diagnosis, as I had, may be able to quite easily decide to pass on anti-hormone therapy or stop taking it if side effects affect QOL, but we should never equate our situation with that of someone who has a more aggressive diagnosis, and faces very different decision factors. The decision you were prepared to make changed when your diagnosis changed. In my case, 15 years ago when my first MO recommended against Tamoxifen, we discussed the fact that I might at some point in the future want to reconsider the decision - perhaps as I got older (I was 49 when diagnosed) and moved into my highest risk years (women are highest risk to develop breast cancer in their 60s & 70s), or if something new developed that increased my risk, etc.. I've revisited the decision several times over the years and in fact I am now taking an AI. I'm lucky in that my side effects are relatively minor, 18 months in. And I'm lucky in that I know that at my risk level, it would be completely reasonable to stop taking the AI should my side effects worsen. I appreciate that my risk level puts me in a position where this is a relatively easy decision, and I know that for so many others, it's not nearly so easy.
Whatjusthappened, I think the problem is priorities. When it comes to approving and funding research, there are a million hands up saying "pick me!". In my 15 years in the breast cancer world, I have seen so much progress - better screening (3D mammos), better understanding of BC (the differences between subtypes), new drugs (many that start with approval for those who are metastatic and then move eventually to earlier stages), fewer cases that progress from early stage to metastatic. But what we all tend to notice is what's still missing. Screening is improved but still is pretty awful with too many cancers missed and tiny cancers and tiny mets pretty much impossible to find. The better understanding of subtypes has led to better treatments for some (HER2+) but also really highlights how other subtypes (TN, for example) have been left behind. Fewer early stage patients develop mets, but those who do, or those who are Stage IV de novo, have seen little improvement in long term survival. With all these critical research, development and funding needs, managing and preventing side effects from existing treatments unfortunately doesn't make it high enough on the priority list to get much funding or even interest. Of course it should - if more patients stay on their meds, we will have better outcomes and higher survival rates - but I suspect that working on reducing side effects for already approved drugs might be seen as looking backwards, whereas everyone wants to look forward and develop the next new drug. Since there is never enough research money to go around, I can't see that changing.
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Bessie...I came to my opinion based on my experience as well as numerous people in this community. I have been a member for over 5 years and check the site daily. I have always stated that the decision to take anti hormone therapy is a personal one and yes very complicated. We all have different circumstances and stats. I respect all options and decisions made and wish you all good health.
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I saw my MO and he was completely fine with me cutting the dose of the arimidex, saying that studies show that it still provides benefit at lower doses and that it's better than nothing. So, it's a decent compromise between the two extremes.
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Whatjusthappened, that's great! I really hope this eases your side effects.
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whatjusthappened - so how do you cut your dose and by how much. those tablets are tiny, would be hard to cut.
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Thank you Beesie!
BlueGirlRedState, I'm not cutting the pills but am only taking them every other day, so in effect halving the dosage. I would rather take half as much every day, but as you say they are very tiny. The half life of anastrozole is 30-60 hours, so it remains in the system even on days I don't take it. JRNJ mentioned in an earlier post that her MO was actually open to her taking a pill every three days, but she was not comfortable cutting the dosage that much. I would certainly talk it over with your doctor to see how he/she feels about it.
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I'm taking it every day now, but still in pain. It didn't seem to help if I skipped a day. I started to get shaky, like withdrawal. I stopped taking tumeric, glucosamine, iron, krill..... I'm taking celebrex and cbd now. I think its helping a little, but not a lot.
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JRNJ, I feel your pain. I'm so sorry that reducing the dose didn't help with your SE's. I would have to agree that it doesn't seem to have helped with my joint pain either, though I think it has helped with the severity of the hot flashes. Hopefully after your body adjusts to the recent onslaught of treatments and surgeries your inflammation will calm down a bit. One can only hope.
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JRNJ, you/we were hammered in so many directions in a short time. First, several surgeries: DMX, ovary removal, breast reconstruction. Without giving our bodies much time to recover, we had a fast landing on menopause as MO told me. Not a smooth, natural landing that most women complain about, but much worst, a fast one. Then medications that come with their famous SE. You had chemo and radiation on top of all these. I mean, we are in a torture chamber trying to get out. I can just tell you that in my case I'm having more of "normal" days than bad days and I hope you will get better soon.
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I know this isn't a hormone question, but is there screening anyone of your ONCOLOGIST doing? Scan's or Blood work etc...
Thanks~
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