Has anyone quit or reduced dosage of the hormonal therapy?
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I've struggled through 4 years of depression and extreme mood swings on tamoxifen. I gave it a valiant effort, but I've reached my limit and I'm going off of it.
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ThreeTree, ILC doesn't respond well to chemo. Unfortunately for us who have ILC. Chemo is one of the best medicines out there that has been used to treat cancer for almost 100 years and it is still number one on killing cancer cells. For us, diagnosed with ILC, we don't have it offered.
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LillyisHere - Thanks for letting me know that. I had no idea!
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AmyCinny,
I tried an AI for 5 months and said screw it. I was 32, I am a Nurse, and I developed TRIGGER FINGER..I couldn't insert IVs..etc..
I quit all anti-hormonals, and 7.5 years later I am still kicking. I was 100% ER+ too.
I look at it like this.. I have seen lots of women do "everything possible" and cancer recurs, so I think it is really a crap shoot overall and I would rather err on quality of life.
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I was diagnosed in early november,, very early,, lumpectomy,, no lymph node involvement,, specimum taken showed ductal cancer,, had re excsision Dec 2,,, no cancer there. Advised no chemo,, no radiation,, just letrozole for 5 years. Started it Jan 1,,, wondering if there is anyone who has used DIM, or indole 3 carbinol as an estrogen suppressant,,, changing diet,, etc. with positive results.
Thanks
a
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I was DX at age 31. I was HIGH GRADE and considered high risk for recurrence. I even quit chemo, which includes Herceptin due to quality of life issues. I made it through 4 rounds of TCH.I refused anti hormonals after side effects were just life altering.
I have taken DIM ever since. I take 2 twice a day. It has been 7.5 years and I am doing well!! Something must be working well for me, or just luck. I have always been super healthy though.
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I started Letrozole on 01/03. The first day was rough with joint pains. I lowered my dosage to .0625mg a day. I do not have any SEs on the lowered dose. I will try increasing it to half a pill a day next week to see how I do. If half a pill a day has no SEs for two weeks, I will try going back up to the full dose. If not, I will stick with the .0625mg for another two weeks and try again. If that doesn't work, I will stick with the lowered dose and leave it. I have not discussed my dosage choices with my MO yet. I will at my next appointment and post on our conversation.
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I stopped Anastrozole (AI) after developing an eye condition. I have been diagnosed (March 2020) with epiretinal membrane, specifically macular pucker, in one eye that progressed quickly from March to my follow-up appointment in September 2020. Neither my oncologist nor optometrist knew about the link between aromatase inhibitors and this eye condition. I only learned about it while searching PubMed articles. Needless to say, I decided on my own to stop taking my anastrozole a few days after my diagnosis after Ocular Coherence Tomography ("OCT" Imaging). I had only been taking anastrozole for three years. I hope I made the right choice.
I still have to hold down my job as a document specialist (law firm computer work), and any serious decrease in visual acuity would put me in in dire straits! Why don't our oncologists know more about this risk, especially for older women? I am now 69 years old.
I was referred to an ophthalmologist eye specialist by my optometrist. Because I am diabetic type 2, he says surgery (vitrectomy) is not a good option for me. He wants to simply "wait and watch". The condition has apparently also started in my right eye. There is no mention of any ocular mets at this point but I can't help wonder. I am very nearsighted and the research on PubMed reports correlation with epiretinal membrane and AI's for older, nearsighted women. No one bothered to mention this to me upfront, and my oncologist knew nothing about the relationship until I printed out PubMed articles and gave him copies. He now agrees with my decision to stop AIs. He switched me from Prolia to Risedronate as Prolia is only prescribed in conjunction with AI prescription (for payment by insurance here in Canada).
So, just a word of caution to older women who are nearsighted (you may want to research and consider taking AIs prior to taking them long-term).
Your feedback is welcome should you have further information on this eye condition and/or possible good supplement to take (I am taking Eyebright, Omega-3's, Lutein, Zeathanxin and other macular protective supplements which are of dubious benefit).
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SajeScents - What were your ocular symptoms?
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SajeScents, I too have the elongated eyeballs associated with being nearsighted. My ophthalmologist has diagnosed macular degeneration which he believes is from the stress caused by the elongated eyeball and is not really age related (I am 81). It has been stable for several years even though he describes my macula as being a mess!. I take Preservision. Hoping your eye situation either stays stable or improves.
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VioletKali - Do you see an oncologist? How were they about you not taking AI's?
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I have to agree with the vision changes. Altho I don't do close work anymore I did notice when I was still working that my vision was slightly blurred, and my eyes are (still) tired all the time. My left eye feels weird, and I notice especially at night I can't see as well out of it. I have an annual exam in March with eye dr but am going to talk to oncologist about this in Feb. I am near sighted. Just another damn thing. I will say since I quit taking my AL a few weeks ago my bones feel better.
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I have followed these AI posts for quite a while. Had friends not on this site try them and quit. Cancer is awful. The protocol has been for years : Cut it out, burn it out and then poison it out. Then these pills . No oncologist is going to give the green light to supplements because there is "no data." I am older, was early stage, and had a crappy journey through Kadcyla, WB radiation, and then Herceptin. None of it was a breeze as I am not one to take any meds and was in good health before this. I totally believe in QOL and being able to take care of yourself.
I am meeting with a University oncologist next week to really discuss these AI drugs. I have not started the Letrozole yet. I am now JUST back after one year to feeling like myself and do not want any more joint pain, heart and cardiovascular worries, retinal or eye issues (and YES these drugs and Tamoxifen can cause that) and anything else that will make my life miserable for the next 5 years. I am also disgusted with the lack of real studies on risk of recurrence of not taking these.
Not mortality data, but recurrence data! Rare is a calculator showing this!!! For goodness sake , these drugs have been pushed for decades now. Enough time to have had more studies. How about studies on the women who walked away from these? There seems to be money for cancer research and protocols so why not huge studies on AI drugs? The heart failure? Retinal detachment? Bone deterioration? Insomnia which is bad for health? How many women went on these and still had recurrences??? Where are more studies on the use of these? I have been looking at DIM and grape seed extract, etc but have not plunged in to order a good brand yet. And I want to know what real side effects DIM might have? That will be part of my discussion next week.
And I see no reason to take more drugs to combat the SE of these toxic drugs that are just dished out.
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Racheldog - I hear everything you're saying about the lack of real detailed studies/information about theses AI's. I too have wondered about much of the same that you have mentioned. On the other hand, supplements aren't necessarily the answer or alternative either. There is also little known about most of them too. Also, a lot of supplements are also "foreign substances" that we put in our bodies and that our bodies have to figure out how to deal with. You might want to check out the foodforbreastcancer site. She has a section on supplements and just like with the lab created drugs, many of those can cause problems too according to the limited research that's out there (she notes studies available). Some substances like DIM, when consumed as food might well be beneficial, but in extract form and in high amounts, it might do more harm than good (that's a made up example, just for illustrative purposes). Some supplements seem to be beneficial in low doses, and some in high. Likewise, some appear to encourage cancer and metastasis in low amounts, whereas others might do it in high amounts. We have no real way to know what's what in that regard, as there is very little research.
I just wish they would focus some research on an actual "cure" and killing those cancer cells once and for all instead of seemingly putzing around creating things that might help some buy some time, but with horrible side effects. I also see a lot of focus on adding a lot of these drugs onto each other for some relatively minor benefit, but more possible side effects. Is anybody actually funding and researching attempts at outright cures? Everything out there, and most of what I am aware of that's being studied, is ways to slow the growth and spread, not just killing it. Maybe it's just me and I've gotten cynical, but I think the research seems to have gotten sidetracked somehow.
For what it's worth:
https://foodforbreastcancer.com/supplements.php
https://foodforbreastcancer.com/articles/supplements-with-warnings-for-breast-cancer
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Racheldog and ThreeTree, really makes you wonder if it's worth taking anything. Onco told me AL's are to help prevent distant occurrences whatever the heck that means. I read medical reports and it's seems there are old studies but nothing current. Drug companies have no incentive to study or improve these drugs. I'm 64, maybe I don't need a full dose. Because AL's effect your bones I get Prolia, but that carries an increased risk of bone fractures! How can a drug that supposed to help your bones cause that??? Frankly I'm about ready to give up on all this BS and take my chances.
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Racheldog, the problem with recurrence data and having calculators show recurrence rates is that there are two types of recurrence, local recurrence and metastatic recurrence. No one wants either, but the outcome of a metastatic recurrence is death whereas most local recurrences are treatable, so they are very different. Therefore just providing recurrence data, whether in a research study or in a calculator, would only lead to more questions and provides no clarity.
The studies on AIs and Tamoxifen did in fact look at both types of recurrence, as well as at the development of new primaries (those being the 3 areas where these drugs reduce risk) but the focus in reports is usually on metastatic recurrence, which is the most serious risk and the greatest concern. Metastatic recurrence equates with mortality; when on-line calculators provide a mortality projection they are using that to represent metastatic recurrence although of course there is a lag time between recurrence and death, hopefully many years.
KID1919, when your Onco said that "AI's are to help prevent distant occurrences whatever the heck that means", it just means that AIs reduce the risk of a metastatic recurrence, i.e. a recurrence that ultimately will be fatal. AIs reduce distant recurrence by ~35% therefore AIs reduce mortality by ~35%. Additionally, AIs also recurrence the risk of a localized recurrence and reduce the risk of a new primary breast cancer.
Of course, the question is, "35% of what?" and that is different for each of us. If your risk of distance recurrence/mets/mortality without an AI is 20%, then if you take an AI, your risk will be 13%. If 100 people with a 20% distant recurrence risk all choose to take an AI, then rather than 20 deaths among those 100 people, there will be 13 deaths. But if your risk is lower, the benefit will be lower. If your risk of distance recurrence/mets/mortality without an AI is 6%, then with an AI your risk will be 4%. And within a group of 100 people who all have a 6% distant recurrence risk, if all choose to take an AI, the number who die will be reduced from 6 to 4.
Tamoxifen and the AIs have been around for a long time now, and the research that was done to get these meds approved was started many years before the drugs were approved, so yes, the research is old. But it is still valid. There were a lot of studies done and there is a lot of information. And if you go to the Clinical Trials database and input "Breast Cancer" and "Aromatase Inhibitors", there are currently 949 trials worldwide. If you add the words "Side Effects", there are 290 trials worldwide. So while there are no more big studies on Tamoxifen or the AIs - because the effectiveness of these meds has been well established - these meds are in use in many current clinical trials.
As for the effectiveness of these meds, I've posted about that before: https://community.breastcancer.org/forum/78/topics/879967?page=9 See my post of Oct 21, 2021 04:01PM
Having said all that, I sit here, having been on Letrozole for 2 years 9 months (but who's counting?). My list of side effects seems to get longer every week. So far my side effects are tolerable, although very annoying, but as they pile up, I don't know if they will remain tolerable. I wish there was a better option. Unfortunately currently there isn't. Our cancers were driven by estrogen. Lowering estrogen to reduce the risk makes all the sense in the world. But as women, estrogen affects pretty much everything in our bodies. And that's why there are side effects. The side effects are from the meds, but really, they caused by the fact that we all unfortunately have had breast cancer.0 -
VioletKali, which brands of DIM do you take? How would one choose a good brand knowing that they are not subject to regulation as to exact ingredients? Do you feel DIM is safe for us ER/PR+ HER2+ gals?
Btw, I am Canadian, so your brand may not even be available here in Canada. I'd be interested in learning more about DIM and various brands.
Thanks in advance!
- Dale
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Hello ThreeTree, I do believe you're wiser than most of us with regard to SEs. I wish I had known about the SE of anastrozole before I filled my MO's rx for it.
I will be seeing my optometrist for testing and another OCT this coming Saturday. He dx'd my condition on the Ocular Coherence Tomography (wrinkling, pseudo-hole of the retina a.k.a. epiretinal membrane due vitreous retraction on retina -- fortunately macula and retinal capillaries are still okay). My main symptom is an increasingly blurry central vision in my left eye (although the consulting ophthalmologist in March of 2020 dx'd early ERM in my right eye too). He also dx'd blepharitis and meibomitis (dry, red scratchy eyes after computer strain). He does not recommend vitrectomy at this point because of my diabetes type 2 (albeit is relatively well-controlled).
Because I have always been nearsighted, I could easily read without any glasses (used only for distance); however, now if I close my right eye, even reading text close at hand is blurry in the left eye although still readable.
I still work remotely five evenings a week on a computer (monitoring three screens), so my eyes are stressed. I now wear blue light-shielding eyeglasses for computer work (relieves the burning, itching feeling). Retiring is not a voluntary option yet.
I have been taking Webber's Blue Light Protection Vision Supplement (Lutein, Omega-3, etc.), along with EyeBright, niacinamide and other supplements. Optometrist cautioned me to stay away from supplements with copper and zinc -- I have been scouring PubMed articles wondering what I should be avoiding and/or should be taking to halt the progression of this condition. I have learned that Keto (carb reduction diet) could help, along with nicotinamide/niacinamide - other studies negate this and even mention the need to avoid excessive vitamin A intake. There are studies that report spontaneous regression without expanding on the factors that could bring this about. I find these intriguing! I'm praying big time!
I stopped the anastrozole after 3 years; and, in conjunction, my oncologist could no longer rx my Prolia. MO says no AI, then no Prolia per Canadian insurance and my work insurance. I am now taking risedronate re osteopenia as cautioned to not stop Prolia abruptly without some other bone-building aid. I do take 5,000 IU Vit D and 120 mcg K2 along with other vitamins.
Any suggestions you may have for me are welcome!
Thanks in advance!
- Dale (69 years old and nearsighted with astigmatism)
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I did a keto diet for a while to lose weight and my vision definitely improved. I'm trying to maintain low carb but less strictly. When I 'cheat' I feel like I can see an impact on my vision quite quickly. In my case, I was starting to get farsighted (normal aging I believe), albeit very mildly. I have some low prescription reading glasses but when I'm following keto strictly it never even occurs for me to reach for them.
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SajeScents--- the effects of retinal traction that can be caused by these drugs is valid. I have had retinal tears and had long discussion with two of the MDs in that office who have decided that if I decide to go on the AI drugs, I need 6 month f/u and not yearly. There is no MO who will discuss or know about this one is there? And there evidentally is more maculopathy with Tamoxifen than the AI drugs.
I think if there were more data and studies on recurrance rates of both distant and local for women who chose to walk away from these drugs----and the data was supportive and good for NOT taking these----then not many women would risk the SE, correct? Again, these drugs have been around for a long time. Or a database for those women who stayed on these drugs for years and years and still got recurrances. I have seen nothing on that.
Sure was a lot of funding asap when the HIV issues hit the US in the 80's. Not sure where all our cancer funding goes. Tremendous need for research on these drugs that are being pushed on us. Again, long discusssion with my University based onc next week.
Such a crapshoot. While lowering estrogen may make sense, suffering with cardiovasular issues, eye issues, dupytren's contracture, depression, female issues, joint pain, UTI's ....on and on does not make sense. And no QOL. And following up any side effects with yet ANOTHER drug makes less sense.
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And Three Tree....I am getting as cynical as you. Healthcare performance is on the slide and providers are burned out. Whenever I see a commercial saying "ask your doctor" I laugh. Lucky if you get 10 minutes on any follow up appointment and in the Covid crisis good luck getting anything but a quick Zoom appt.
I am angry watching the amount of commercials---probably even during the NFL games---having big Pharma shove in commercials of happy cancer patients on "Ketruda" or "Ibrance" when only if you listen closely at the end they run down all the crappy things and risks that can happen with these new drugs. Big $$ for pharmacy makers. I am not the only one disgusted with this as online there are a wealth of complaints and wanting these pulled.
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There is only so much that researchers can do, with limited funds, limited resources and limited time. We want new better drugs and treatments to be developed and tested. We want solutions to problems caused by current drugs to be developed and tested. Why should money be spent on research to get answers that we already definitively know? The research might not be recent and the data might not have been collected in the way that some people would prefer, but the results are known.
AIs reduce the risk of distant recurrence by 35%. If two women both have a 20% risk of metastatic recurrence without taking an AI, the woman who then chooses to take an AI will reduce her risk to 13%, while the woman who walks away will of course continue to have a risk of 20%. Therefore the woman who walks away will have a 53.8% higher risk of recurrence than someone who takes the AI.
AIs reduce the risk of local recurrence by 50%. If two women both have a 12% risk of local recurrence without taking an AI, the woman who then chooses to take an AI will reduce her risk to 6%, while the woman who walks away will of course continue to have a risk of 12%. Therefore the woman who walks away will have a 200% higher risk of recurrence (i.e. double the risk) than someone who takes an AI.
If we have 100 women, and all 100 have a 20% risk of metastatic recurrence and all 100 have a 12% risk of local recurrence, and all 100 women take an AI, here's what will happen:
- 13 of these women develop a metastatic recurrence despite taking the AI.
- 7 of these women who would otherwise have developed mets don't develop it because they took the AI.
- 80 of these women don't develop mets and never would have whether they took the AI or not.
- 6 of these women develop a local recurrence despite taking the AI.
- 6 of these women who would otherwise have developed a local recurrence don't develop it because they took an AI.
- 88 of these women don't develop a local recurrence and never would have whether they took the AI or not.
- All 100 women are represented twice in these numbers, once for a metastatic recurrence and once for a local recurrence.
Where does breast cancer research funding go? Use this database to find out: https://clinicaltrials.gov/ct2/results?cond=Breast+Cancer&term=&cntry=&state=&city=&dist=Not liking the information or not knowing how to access or interpret the data is not the same as the information/data not being there.
None of this is to defend the wasteful spending and high prices of the American pharmaceutical industry - I'm in Canada where fortunately we don't have drug ads (but we get all the U.S. channels so we see the American ads) and where our drug prices are not quite as outrageous. It's important to remember that a lot of drug development and research is done by hospitals and universities and research facilities.
Given that I've posted similar information 3 times now (at least) with little to no response, I'm not expecting any reply to this post or even acknowledgement. I'm obviously pushing water uphill here. But I feel it is important to post this because BCO has lots of lurkers who read but don't comment, so I believe having this information out there is important. I do get lots of PMs from people who choose to not comment here.
Specific to ocular issues with AIs: Review of the Literature on Ocular Complications Associated With Aromatase Inhibitor Use https://www.cureus.com/articles/65620-review-of-the-literature-on-ocular-complications-associated-with-aromatase-inhibitor-use0 -
"Sure was a lot of funding asap when the HIV issues hit the US in the 80's. Not sure where all our cancer funding goes."
This was absolutely not the case. The president actually joked about AIDS and most people didn't give a damn because it was associated with stigmatized gay men. Many people even thought that those men deserved it. Research was NOT supported and in some cases was actually impeded - the protease inhibitors could've been out years earlier - so many people died needlessly.
The gay community and its allies fought so very very very hard to get the medical research and to support it. There were protests and die-ins in the streets for even a very basic government response. Things are and have always been much better for cancer, including breast cancer.
I'm sorry but it is an insult to the memory of the people who died needlessly to imply that somehow a magical world of funding and support existed.
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I really do enjoy reading Beesie's posts. Great information as always.
Anger over having the option to take or not take AIs seems a little senseless to me (my opinion). Anger won't stop the fear of SEs or stop SEs if the choice is to take AIs to try to prevent recurrence or metastatic disease. Anger will not resolve the fear of not taking the AIs for QOL due to SEs knowing there is a risk of recurrence or metastatic disease.
I'd guess that many who are no longer here with us today from BC would not be angry with having a choice to take or not take AIs if they still had the option to be here today.
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I have been off and on with AI's since the beginning of my treatment. I posted many times on this thread about being torn between unbearable side effects and the risk of recurrence, and have made my peace with it. I've been through the three major AI's now, and I can't tolerate any of them. I have a family to care for and a rather demanding full-time job, and I simply cannot function on AI's. I don't blame the doctors, the pharmaceutical companies, or anything else (except cancer). My body and AI's just don't mix. Beesie's example is my risk exactly (according to oncotype). 13% with AI's, and 20% without. I'm going to try and start Tamoxifen next week, which my MO doesn't find ideal for me, but he believes it is better than me not taking anything. I am cautiously hopeful that I can tolerate it, but if I can't at least I will be able to tell myself that I've tried everything.
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SajeScents - I really don't know that I'm wiser than anybody else on this forum, but thanks for the mention. Thanks also for the details about your eye issues. I'm wondering now how to tell the difference between sinus, migraine, vision problems, and heaven forbid, brain tumors. Several months ago I started getting major post nasal drip, sinus infection, and concomitant headache, that an antibiotic finally cleared up. The problem comes with blurry vision too. Unfortunately within a few days of stopping the antibiotic, all the symptoms come right back. I don't want to keep taking and trying different antibiotics. I've been using some saline nasal sprays, along with nasal irrigation, but that only helps somewhat. Before long, it all gets bad again with the headaches and blurry vision, combined with the post nasal drip. I have read that low estrogen levels, i.e. something caused by these AI's can cause all of this problems as side effects. As a last resort I might go see an ENT, but I am so tired of making all these dr's appointments for side effects related to Letrozole. I always turn out to be fine generally, and my problems are just side effect related. I'm at my wits end, but might think about seeing an eye doctor also re the blurry vision. These side effects are debilitating and the oncologist is no help. She's either dismissive or just suggests I try another one of these with all the side effects. If low estrogen causes these side effects, I just don't see how switching to another drug that causes low estrogen is going to be of much help.
Racheldog - I'm with you re all those drug commercials on TV! They are awful and shouldn't be allowed. All that background "happy" music with scenes of someone having a wonderful life with their friends and family, because they take drug X. How is that any different than pushing street drugs? When I was young we didn't have those ads on TV, radio, or in magazines, etc. When they first started to allow it, I remember many people getting upset over it and saying it was unethical and a big mistake to change the rules like that. I still believe that and think it's a shame that those ads are now more frequent and worse than ever. It would be nice if all that money they spend creating those ads could be put into research on a non-estrogen lowering treatment/cure. We need estrogen in our bodies and as long as they focus on lowering estrogen, we will all continue to have these side effects. I would imagine too, that if someone took something like DIM in large enough amounts to achieve the same low estrogen levels that the AI's produce, that that would cause these side effects too. It's the estrogen deprivation that is the problem, no matter which drug or supplement causes it.
Beesie - Thanks for posting the information that you did. The stuff you post is always helpful and informative, especially with this kind of presentation of "out of 100 women". It helps illustrate things real well.
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Quinine helps with legs cramps. I think you get it from tonic water (or maybe soda water) The brain fog is so ridiculous right now I'm a walking fool
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Keep in mind sinus infections or any infection in your head should be taken extremely seriously. Not many types of antibiotics actually get that far into your head so I would investigate/ask about what they're giving you for it. I'm overly cautious about sinus infections; my 16 yr old niece died from one.
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GradyStubs2 - I hear what you are saying about how serious sinus infections can be, and I'm very sorry about your niece. If mine ever start to feel "out of hand", I do go see a doctor. It's my understanding that while not all that common, an "out of hand" sinus infection is a terrible and deadly thing, as you have pointed out - UTI's can be like that too. I read though, that if the nasal drainage is clear, it is likely a "hormone" headache and not viral or bacterial. The problem is that if the drainage gets bad (as mine can certainly do), it can turn into an infection, just because of the sheer chronicity of it all. I've read that both migraines and hormone drops can cause these sinus symptoms, along with the headaches and blurry vision. A friend of mine tells me that the symptoms I described to her sound very much like migraines she used to get. I've never had a migraine that I've known of in my life, but this all seems to be a part of my "Letrozole experience". When I google my symptoms the things that come up consistently are sinus infections, migraines, and brain tumors. At this point I'm going with the sinus infections and migraines that can be associated with low estrogen levels.
I'm very curious though about the increasing talk of eye problems developing from these AI's.
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Threetree, I agree with your post . And Whatjusthappened yours as well. I must know three breast cancer friends who decided that after trying the AI's they just did not connect and work for them to live a normal life. They stopped. If you have to work, if you live alone and take care of property, if you take care of animals, if you have kids, if you need to function without calling upon help at home and have been independent and healthy your whole life before the toxicity of these drugs and stifling side effects, then it remains a crapshoot to go without them. Especially if you are older.
There is no post on this site for those who decided to stop. They just moved on. Interestingly on Cure Today there is a great article from a woman who chose to walk away from endocrine therapy. She posted in the past (got both flack from others and a lot of interest too) and then she posted many years later. Her decision.
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