Rejecting hormone therapy
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I understand that there is no accurate apples to apples comparison for survival and yes I did see the predict tool which my oncologist disagrees with. It doesn't include radiation, but does include hormone therapy so it's not quite a complete view.
Totally get where you are coming from and agree with your post!
Kate
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If women don’t keep complaining or making note of the fact they are discontinuing the drugs due to SEs, we will never get anything more tolerable. I’dlike to see other options that don’t require stripping every drop of a required hormone out of our bodies.
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KateHanni, just in case you haven't seen it before there is a radiation nomogram here https://www.tuftsmedicalcenter.org/ibtr/
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AI's are probably coming my way, once I sit down with my oncologist, and I too worry about the SE's. That's an interesting tool, Moth. Here's another one that was referenced in The Undying by Anne Boyer, but also lacking radiation as a therapy: http://lifemath.net/cancer/breastcancer/therapy/index.php
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All I know is that I wish I had tried harder with the AI'S. I went thru alot with Tamoxifen, not only physical but emotional issues. I had the hysterectomy and went to AI. I struggled physically and decided to stop. A decision that haunts me since I am now metastatic.
I wish my MO had been clearer about the benefits of taking them. I wish my MO had been more sympathetic about my pain and offered more pain management options to get thru it. I wish I had sucked it up and just took them now.
I know there is no way to know if it would still have come back.
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Agreed!
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Here's what I think:
We need to start a page of those who are starting hormone therapy and getting feedback on those who have side effects so much so that they are thinking of trying a different approach, quitting or modifying their use of AI's due to toxicity. Then if we can sort them by type of cancer, mets or no mets etc we might be able to get a clearer view of recurring incidence rates when those of us who cannot tolerate the AI's and either just stop, modify their use as I have every other day or seek alternative treatments; about recurrence rates. Those are not tracked unless you are totally compliant with the AI's. And 50% of all women are not compliant. They either quit due to side effects or try taking htem less often.
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Both PREDICT and LifeMath are estimating mortality rates. Mortality rates are driven by distant recurrence. As a general rule, for most patients, radiation does not affect survival; the impact of radiation is on local recurrence rates. Of course there are some exceptions, but these models reflect the general population, not these unusual exceptions.
The logical assumption of both of these models is that patients will have adequate localized treatment, whatever it might be. Standard of care treatment. Therefore neither model asks about surgery or about radiation. This isn't a fault with the models but reflects the reality that for most patients, lumpectomy + radiation = mastectomy... and when necessary, re-excisions are done after a lumpectomy to achieve wider models... and when necessary, rads are added after a MX. All of that means that the assumption of these models is that everyone starts with a relatively level playing field with regard to distant/metastatic risk. And that's where these models come in.
My MO, who works at one of the top cancer research hospitals in the world and is no slouch, uses PREDICT.
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Kate, there are several threads related to this topic already on here so there is data to be mined for those who are interested. However, that will be skewed because it would not account for those who are not on bco for whatever reason--doing well, moved on with living, don't play with computers....
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I wonder if breastcancer.org could start a virtual group for those taking AI's to discuss their experience with them? I think it would be a very popular group given that 1 in 8 women will get breast cancer and 70% of those will be hormone positive and require taking the AI's that's a huge number of affected cancer patients.
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Kate, what do you mean by a virtual group? Isn’t this thread a virtual group of sort for those who do not want to or stopped taking AIs for various reasons?
There’s another thread called something like “ Doing well on AIs…” - for those who want to hear mostly positive stories
I am in my eighth year of Anastrozole without significant side effects
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BCat40 - I couldn't agree more with the notion of sounding off about how intolerable these endocrine treatments are and the need to look for better solutions. Some seem to think we should just be grateful that there is something helping us and we're not dead, and I think most of us are, but that does not preclude the need to keep searching for a better way! I don't think estrogen suppression is "the way". I think they should pursue other avenues that will just outright kill cancer cells, and stop messing with the hormones. We need them.
Kate - Thoughts about these treatments are spread out all over as others have said. What I find interesting is that there is a thread, "Doing Well on Aromatase Inhibitors" but from what I read the majority who post on there are not "doing well" by any measurement I would use. They are finding way to tolerate and deal with some of the side effects, but I would not consider that "doing well". As before, there is a desperate need to get away from these endocrine treatments and find something that truly works. I suppose some of it is relative to the individual, but many who are having difficult side effects don't seem to think it is a real problem, so might not contribute to a "problem" thread.
They push these AI's as safe and effective and they are neither. They are not safe and they are only somewhat effective. To tout and hype them as some kind of wonder drugs like the medical and pharma fields do, is egregious in my book.
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Hmm, I will take a look at the Doing Well on AI threads, but like many say I do believe we need some estrogen in our bodies and big Pharma seems to have stopped looking at other research. These seem like horrible solutions. Estrogen is needed for heart and bones, skin, etc. I do not want to be on these drugs just to live to exist. I am older but also want what is left of my life to be doable.
I already have significant osteoarthritis in many joints but have managed to work and do what I need to do without even taking nsaids most of the time. Hate taking anything if I do not need to. If these drugs worsen joint pain I will not stay on them. Or try every other day or????
On another note, has anyone on this thread had a joint replacement? I had a successful knee replacement three years ago. I need the other one done. If I start these drugs----known for bone loss---I wonder what that will do to a new pending knee replacement and the stability of the prosthesis?? I will certainly as the orthopedic surgeon as I bet this comes up at their conferences.
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"They push these AI's as safe and effective and they are neither. They are not safe and they are only somewhat effective. To tout and hype them as some kind of wonder drugs like the medical and pharma fields do, is egregious in my book."
They are pretty much wonder drugs. I remember threads where women with triple negative were desperately trying to get into clinical trials for meds - unproven - that might help reduce chances of recurrence. Because they have nothing.
That said, I'm not sure what you mean by medical and Pharma "touting" them as wonder drugs. I can't say my doctor ever called it a wonder drug. It's just a drug that has been shown - statistically - to make a significant difference, and therefore is part of the standard of care. It's not more (or less) of a wonder than chemotherapy or radiation.
The fact that it's impossible to predict its impact on me as an individual is frustrating - I do wish we had something like Oncotype but for endocrine treatment. But it took a while to develop Oncotype and there is ongoing development in breast cancer treatment research, and we may well get there even if it's too late for me personally.
Look, I had really bad experiences with tamoxifen, so I'm not talking out of my butt here. I absolutely agree that there is a need for more development and research. But it is sad to me to see these drugs undervalued, as well, especially when it sows distrust of the clinical trial process. The fact is that that the efficacy of these drugs *has* been well established, as well or better than many other medical interventions.
Are they safe? Well, not 100%. But neither is any other form of treatment, including Tylenol. Pick any drug you like and research it on the internet and you will find people who had terrible experiences with it - because across an entire population even rare risks can still happen to many people, and people with bad experiences are much more likely to write about them. Statistically, few women experience permanent negative impact from these drugs. But just like we all fell on the wrong side of the cancer risk, some will fall on the wrong side of the drug risk. If you feel your doctors/pharmacists didn't adequately share with you the risks of the drugs, that's on them. But it doesn't make the drug itself unsafe.
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I was thinking of a zoom or video chat group. When I first found out I had cancer I was able, through another organization, to join a cancer zoom group and it was super helpful. If there were an aromatase inhibitor group where we could all share stories and solutions to different side effects or discuss the side effects I think it would create even more relatedness than this message chat. I do love this chat but also love that feeling of connectivity that comes with video support groups. I really need something like that, especially since I thought I had the hard parts (the surgery and radiation) overwith and it turns out the life extending AI's are much harder for me to deal with.
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I haven't heard of them described as wonder drugs, but am quite shocked (and I work closely with pharma for my job at a non profit single disease area); that they don't disclose in the US the same side effects to the AI's that they disclose in the UK and other countries that have a universal health care system. One example is UV exposure. When I was trying generic exemestane and we were kayaking with a friend who is a physician (she has 5 sisters who've all had breast cancer and all of whom took AI's) I got a horrible set of hundreds of blisters on my arms after about an hour of paddling in my kayak and UV exposure was not listed as a side effect issue on my list. But when I went to the UK list of side effects for same medication that side effect was prominently displayed.
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I know in NYC they had some support groups specifically for dealing with hormone deprivation (I refuse to call it hormone “therapy”) SEs, but I don’t know if they ever moved them online during Covid.
Perhaps I am not a rainbows and sunshine kind of person but I do not feel grateful for having these meds. In fact I feel anger towards the medical establishment that that is all they have to offer us. How good is a med if it decreases QOL so much for a huge contingent of patients that they refuse to continue taking them. I also find all the “talk to your doctor” about SEs and “don’t discontinue” admonitions all over the BCO editorial content to be infantilizing. Like it hasn’t occurred to us to talk to our doctor? The advice I got was to drink tonic water and do acupuncture. Neither did anything to help.
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So I think the thing is....oncologists are used to a disease that kills. The fact that 5 and 10 yr survival rates for some early stage cancers is now so high is really still a) a miracle and b) new.
And yeah, as a stage 1 triple neg I was really jealous that there was nothing I could take in 2018 to lower risk of recurrence.
I guess we all look at these things differently. There are more guidelines now on cancer survivorship care and sure, we need to find ways of ameliorating SEs. But if your cancer is hormone driven, turning off the hormones is one of the best tools we've come up with.
And I can't begin to tell you the things I'd give up without hesitation for more years of life...
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Kate - I too have seen where sometimes the Canadian and UK lists of side effects address some of my issues better than the US ones. Also, I'm finding a lot more by looking up "low-estrogen" "menopause" and things like "body tingling and menopause" "low estrogen and digestive problems" and find that a lot of the symptoms I get are noted on sites discussing those issues, where they are not at all included in "Letrozole side effect" lists. These other ways of looking up side effects that might be experienced also often give reasons why the side effect occurs, e.g. when estrogen is low, cortisol rises and causes problem X, etc. Invariably the "Letrozole side effects" lists are not only incomplete re symptoms, but they also offer no explanation as to why a side effect might be occurring and you see the "talk to your doctor" notion that BCat40 mentioned above. I agree with her that that line gets old pretty fast and isn't a particular help. Sometimes the doctors have a possible solution and sometimes they don't. More often than not I've had the experience of them not knowing just why certain symptoms happen any more that the rest of us. I guess I'm not a "rainbows and sunshine" person either - wink. I just prefer to see the details and reality of this stuff. Some of it is very helpful and I am glad that it's available.
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Have you checked https://www.rxlist.com/aromasin-side-effects-drug-center.htm? FDA site? All possible side effects listed, including their frequency.
Do you check side effects of OTC meds? Tylenol I am sure comes with many
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I agree with Salamandra's post 200%. No claims of wonder drugs by my mo an she was very honest about potential se's. She was equally honest that there was no way, in advance, to know who would be effected by bothersome se's and who wouldn't.
I have been on one AI or the other for 10 years. Yes, I have some joint and bone pain but I have worked out ways to manage and live my life almost normally. Clearly at stage IV, I am very motivated. Given that I have had 10 progression free years, the aches and pains which are manageable, are no obstacle to me.
Yes, I wish we had a drug that worked 100% of the time for 100% of those who take it. I wish it had no side effects for anyone. But this is not our current reality nor do I know if there is anything being developed that will accomplish the same things as any of the current crop of drugs sans side effects. Having a decade of bc under my belt I have already seen several new treatments come on the market. None perfect, none with guarantees and none fast enough for our liking but progress none the less.
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muska - In my case, I do check for side effects of OTC meds and they do come with a lot, and I try to avoid most of them whenever I can.
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moth - I can totally understand why you would have wished you could have had something like an AI as a possibility! I would too in your situation. But what if you tried them and were absolutely miserable, even possibly to the point of quitting them altogether? Many ER+ women have that problem, and then they are essentially in the same boat you were.
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ThreeTree, well it's impossible to say for sure but I know my motivation was high and I'll put up with almost anything to live.
Oddly enough even tho I'm TN I had 1 lung met come back faintly ER+ positive so I've been on letrozole since last December. It's honestly probably not doing tons for the cancer but I won't leave a stone unturned.
Right now I'm likely getting all the SEs and none of the benefits.
I will take all the joint pain, fatigue, no sex, UTI, prematurely ageing skin... sign me up for all that if I get to live. Knowing this cancer will kill me changed everything. I was always very aware of risk of recurrence so I tried to do what i could - which for TN was exercise and maybe green tea. If I could have outrun this bastsrd I would have... I simply cannot imagine that i wouldn't have found a way to make AIs work but who knows
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After re-reading your post there are several things to mention.
In the BIG 98 study 50% of participants left the study due to side effects. The side effects can be deadly. I just found out that I have osteoporosis in my spine and went to the dentist today (AI's cause bone loss) and after one month on Exemstane I have now a 2 year old implant that is nearly falling out of my mouth from AI caused bone loss. So I can't even qualify for the Prolia injection that would possibly help restore my bone growth if I keep taking the Exemestane or any other AI. Tamoxifen comes with blood clot side effects. These are scary. This aside from bone a joint pain, depression, anxiety, sleep issues, hair loss, bone loss, heart palpitations, fatigue to the max and UV blisters from sun exposure to name a few. With 50% of women stopping the AI's due to side effects that's a revenue generating machine/or loss for pharma. I don't understand why they didn't stack up more molecules behind those molecules to create an AI with less debilitating side effects. Makes no sense at all.
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Kate, you don’t have your diagnosis published. You mentioned you don’t qualify for Prolia and I don’t understand why.
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Moth - Again, I absolutely understand and sympathize with what you are saying. If it was me, I'd probably do the same thing; try and do or take just about anything as long as I could tolerate it. Given that, there are still women who cannot tolerate the side effects, because they are just too severe. Even though these drugs help to a certain extent, I still think they should work real hard at coming up with something better. I feel the same way about those of you with TN. They should be working really hard to develop more options for you, as there is a big treatment dearth there.
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KateHanni - Yes some of the side effects of these drugs can be deadly. I don't think we should look at this as some have suggested, as "well all drugs have side effects". These drugs come with particularly severe side effects for many and those who take the drugs are expected to do so for years. It's not like taking something OTC for a headache and discovering that while it may help your headache, it also causes some stomach upset for an afternoon. There are side effects and then there are side effects.
I'm still hanging in there and giving this my best shot for as long as I can. It's been a little over 18 months now and I haven't had a recurrence. Whether it's the letrozole or not, I'll never know, but if it has been the letrozole, I'm quite grateful. It doesn't mean that I am not also miserable and wishing for something better.
You note 50% leaving the BIG study over side effects. I've seen estimates of anywhere from 30-80%, depending on what you read, so that 50% might be a good ball park and that's a lot!
I'm really sorry that you are having the problems you are. I do think, along the lines of what you have suggested before, it would be interesting to see a thread something like, "Tried AI's But Decided to Quit" and just see what those people's experiences were like. I've seen on these boards where some have had to have joint replacements, couldn't walk anymore and needed walkers and wheelchairs, and much more.
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KateHanni, where did you read that 50% of participants left the study due to side effects?
BIG 1-98 started with 8010 participants, 4003 in the Letrozole group and 4007 in the Tamoxifen group. When long-term follow-up was done (average 12.6 years), data was available for 4433 patients, i.e. 55%. This does not mean that 45% of the patients dropped out. In fa
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KateHanni, could you provide a link to your source indicating that 50% of participants left the BIG 1-98 study due to side effects? I've haven't been able to find anything on this.
What I did find is that BIG 1-98 started with 8010 participants, 4003 in the Letrozole group and 4007 in the Tamoxifen group. These patients were enrolled in the study from 1998 to 2003. At the end of the study, in 2010 (median follow-up 8.4 years), 6416 patients remained in the study, with 1594 deaths or withdrawals.
Although the sponsored study had ended, academic partners picked up the study and continued follow-up. In 2019, when long-term follow-up results was reported (median follow-up of 12.6 years), data was available for 3833 patients, i.e. 48% of the original 8010 and 60% of the 6416 who remained at the end of the study. It wasn't that so many patients dropped out but rather that these patients were lost because many research centers was not under contract for the long-term follow-up and many other centers chose to not participate.
Adjuvant Letrozole and Tamoxifen Alone or Sequentially for Postmenopausal Women With Hormone Receptor–Positive Breast Cancer: Long-Term Follow-Up of the BIG 1-98 Trial https://ascopubs.org/doi/full/10.1200/JCO.18.00440
If you have other information about the drop-out rate, I'm really interested to see it.
Edited to add:To the earlier point about lack of interest from researchers, when I go to the Clinical Trials database and input "Breast Cancer" and "aromatase inhibitor and side effects", it brings up 327 studies.
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