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How long to take a break from HT?

Hi all,

I'm finally experiencing, I think, some dramatic side effects from taking exemestane for 11 years. I want to take a break to see if the side effects are related to this long-term use of AI. Joint pain in hips, cracking in neck and back, urgency and incontinence, and now some belly fat. I wondered if 2 weeks would be enough to see a difference (if these problems are AI-related). Anyone?

Claire in AZ

Comments

  • maggie15
    maggie15 Member Posts: 766

    Hi Claire,

    I'm not able to give you any information from experience but I spent some time discussing this with my MO. While some side effects disappear in a few weeks, others take several months to resolve and a third group persist. This link is about arimidex but gives a good idea of which ones might improve quickly after stopping any AI.

    https://www.drugs.com/medical-answers/long-side-effects-after-stopping-arimidex-3539753/#:~:text=Some%20side%20effects%20of%20Arimidex,few%20weeks%20of%20discontinuing%20Arimidex.

    As an example my MO explained that muscle pain would improve after a few weeks of no meds but joint pain would not. The joint pain is caused by disintegration of the cartilage causing or exacerbating arthritis. Stopping AIs will prevent further damage but the cartilage never grows back. For some SEs the rise in estrogen solves the problem but for others changes caused by lack of estrogen are permanent.

    Eleven years on exemestane for stage II is admirable. I guess the treatment pros/cons balancing act never goes away. All the best figuring this out for yourself.

  • claireinaz
    claireinaz Member Posts: 662

    Thank you. The first ten years were easy, but this last 6 months hasn't been.

  • maggie15
    maggie15 Member Posts: 766

    According to my endocrinologist estrogen levels go down after menopause but don't necessarily stay stable. The problems in the last 6 months could be due to a further dip increasing the SEs of exemestane.

  • charlotteme
    charlotteme Member Posts: 31

    After 12 years and 6 months of taking Femara / Letrozole I am contemplating the same decision, to continue or stop…?…

    Overall I have done very, very well on the AI. Manageable side effects - until recently. I have experienced several seemingly unrelated health issues in the recent months such as torn retina, other retinal issues being watched, growth of benign cysts in multiple internal locations, and increased bladder issues as well.

    I am 63 and have had a lot of chemo in 2010 so some things may be related to causes such as chemo history or simply aging. My oncologist has left the decision up to me thus far but I suspect she will have me stop the Femara at my next appointment.

    I was Stage 3 with multiple positive nodes and Grade 3 at diagnosis. I am fairly scared to go off Femara but am also starting to wonder if the hormonal deprivation is speeding up the aging process in my body. We are in “uncharted territory” with continued AI treatment beyond 10 years so not a lot of research to go on. All the Best, Charlotte

  • claireinaz
    claireinaz Member Posts: 662

    Charlotte, I am much like you, and ILC to boot, meaning higher risk of recurrence later in the game. I had 6/11 + nodes, Stage II B, high grade 1 (not usual for ILC), and I accepted exemestane since I tolerated it, but now I wonder. I was able to get an appt with my MO tomorrow, because if there is something more serious I want to know about it now instead of later. My gyno basically told me 2 weeks ago at my annual that the exam showed extreme low estrogen. Now I'm noticing more constipation in the past few days, very unusual for me, and I'm fearful there is some tumor pressing on a nerve or something equally horrific. I had chemo/rads/MX/recon in 2011-2013. I don't know why my signature isn't showing on this post since I thought I had saved it through this new forum system.

  • lillyishere
    lillyishere Member Posts: 769

    My MO told me that once you stop AI, the benefits continue several years after stopping it. Claire, please let us know what your MO recommends. Good luck!

  • claireinaz
    claireinaz Member Posts: 662

    Lilly, I just read that as well. I will report back after the appt, definitely. I also have an appt with a urologist that my gyno suggested I make when I told him about the incontinence issue. I figure if I'm going to need a scan and if that scan shows something scary, I'd rather my MO (who I have a long relationship with) tell me the news rather than a new doc that I don't know at all.

  • claireinaz
    claireinaz Member Posts: 662

    I saw my MO yesterday, and here's what she said. She said that incontinence was most likely due to exemestane and aging. She said I could take a break (2-3 weeks) from the med; I see her again for my six-month check up in three weeks, so we can evaluate then. Meantime, I already did stop taking exemestane 3 days ago (only 3 days!!!), and I'm already seeing a difference-waking up with dry pad, can run water without running to the bathroom, wait longer to pee, and I'm not as bloated as I felt previously. I explained to her that the incontinence was cramping my style-I am very active, and I do hot yoga/pilates/barre 4-5 times a week and walk/hike on weekends and during the week as well, and I can't even walk my neighborhood anymore because of the urgency problem. I have an appt with a urologist this Monday, and she told me to ask about Mona Lisa Touch. She had it herself and said it cleared her incontinence/urgency problem up completely. Only thing is, it isn't covered by insurance and costs around $4000 or so dollars.

    Now, the question is: do I quit exemestane, allowing me to exercise without worry, which I think also supports a reduced rate of recurrence, or….?

    I'll post what the urologist says after I go.

    Stay tuned.

  • maggie15
    maggie15 Member Posts: 766

    Claire, It is promising that the incontinence has improved so soon after stopping the exemestane. Hopefully this will continue as the drug leaves your system.

    I decided against AIs for many reasons, principally because I have other precancerous conditions where estrogen is protective. One was the ability to exercise without increased arthritis joint pain since that along with a healthy diet has been shown to reduce the risk of recurrence by 40 -50%, the same as HT. I was older than you when diagnosed but you do have 11 years of HT behind you. I haven't found any research on the benefit beyond 10 years in regional bc so it might be time to put QOL first.

    You should ask the urologist if the Mona Lisa procedure (if you decide it is worth it) will work if you are still taking exemestane. I hope you can get answers to your questions.

    Thanks for the update!

  • lillyishere
    lillyishere Member Posts: 769

    Claire, I had a 6 weeks break from letrozole to exemestane. Few letrozole SE went away within 6 weeks and some took 6 months. My MO said it is OK to have a small break of 5-6 weeks. You have been in AI meds for such a long time and small breaks will help you continue taking this med. Can you get a second opinion?

  • claireinaz
    claireinaz Member Posts: 662

    Maggie15, I am seriously considering just stopping the drug. I've also exhausted research looking for the actual science behind taking an AI more than 10 years—and still haven't see any supporting article that recommends it. I feel so much better not taking it. It's been less than 2 weeks, and I notice a difference. I slept all the way through last nite and didn't have to wake up to pee, and woke with a dry pad. My only issue now is that I'm a bit constipated-I wonder if the exemestane was keeping me regular? I've never been "slow" before; always completely regular.

    The urologist put me on overactive bladder meds-without even really asking me questions to determine if that was even the problem. He didn't seem too interested in low estrogen—just sort of nodded and said it contributes. The side effects are awful (constipation/dizziness/brain fog/sleepiness), and my husband is recovering from a prostate biopsy for possible cancer. I don't want to begin a new med when hubby needs me.

    If I can't tolerate the med, then urologist said I would be a candidate for a less side-effecty drug or qualify for a sacral stimulation method. If you can believe that—take this awful drug and then if you react to it, then insurance will pay for something better that affects your QoL less. I'm afraid to even take the med since I have Meniere's disease which can already make me dizzy at times with no warning. I'm considering telling him I had a reaction so I can move on. I'm not really interested in taking still another drug that causes more side effects that I then have to manage.

    I see my MO on the 25th, so I have a few more weeks to continue to hope for improvement before I talk to her.

    Claire in AZ

  • maggie15
    maggie15 Member Posts: 766

    Hi Claire, I haven't seen any research on continuing AIs for more than 10 years. There are some studies showing that the benefit of 10 years is not all that much more than 7 but my MO still recommends 10 if any lymph nodes were positive. I'm glad the incontinence is getting better. It seems logical to me that even a small rise in estrogen would help that.

    As far as constipation goes I take ducolax stool softener (not the laxative variety) to counteract the side effects of the iron I have to take for anemia. I also have to remind myself to drink plenty of water even when not thirsty. For the most part it works pretty well. If I need something stronger my PCP has me take Miralax since that seems to cause fewer rebound side effects.

    I'm sorry the urologist prescribed meds without really listening to you. Insurance does sometimes make you jump through hoops. My insurance plan is no longer going to cover my inhaler that works really well for my pulmonary fibrosis cough and is substituting one with a different steroid. My pulmonologist has never used that drug for my condition before (it's generally for asthma which I don't have) but I'm going to have to try it for a month so he can say it doesn't work and apply for an exception. It's all based on pricing deals and kickbacks even though they try to make it sound like it's a better medicine. I'm with you on saying the active-bladder med worsens your Meniere's so you can try something with fewer SEs. It's not good when the cure is worse than the disease.

    I hope your MO appointment goes well. I feel like each one of us is a science experiment where health problems, side effects and meds are in constant flux. Let us know how it turns out.

  • gailmary
    gailmary Member Posts: 417

    Another doctor that doesn't listen. Imagine that. Just decided to change Dr's cause my PCP doesn't listen. Very dismissive. Doesn't seem to even believe in side effects and not familiar with SE from what he prescribes. Ugh!

    I had a MO that said he would prescribe AI to any and every woman for life if he could. He retired.

    I guess I'd consider my personal risk factors for it metastasizing. Wow 11 yrs. Could you switch to something else. Or a lower dose if you feel you still need it. And yes the overactive bladder med is wicked. I'd not take if I could avoid it. I tend to get the weird side effects that also need treating.

    Yes a science experiment.

  • mandalynn
    mandalynn Member Posts: 21

    Just jumping in here. I was diagnosed stage IIIa in 2008. I was on tamoxifen 5 years then letrozole for 5+ years. I have just gotten diagnosed with a late recurrence and I’m now stage 4 with mets to the bone (and possibly other places that are unknown at this point). The first thing they did was start me on letrozole again and I’m going to be on it along with some other medications. My thought is why didn’t they just keep me on Letrozole if it’s what they were going to use when you if you move on to stage 4? I wish I never stopped it because now I will permanently be in the medical world. My oncologist is very encouraging, but I’m definitely looking at a shortened lifespan.


    I think I fell into the black hole where they didn’t have any “evidence“ but I’m reading now that lobular tends to have late reoccurrence. I should’ve just stayed on the medicine (as for me I wasn’t having many side effects).

    My thought is that being 14 1/2 years out from diagnosis the doctors were wanting to say I was “cured” but I think what the reality is is that I have always had breast cancer “seeds” throughout my body that medication was just suppressing effectively.


    Sorry if this isn’t what you wanna hear because of your side effects. I agree with the other poster who says to discuss lowering your dose or maybe taking a (small) break. I think my problem is a break of four years was just way too long. I know I was fine for several years and then this has come on.

    On the good side, after only four days of letrozole my pain from bone Mets (which I realize now that’s what I was feeling instead of paying from a fall I had), has already gotten somewhat better. So that’s my anecdotal evidence that the medication actually does do something.


    Food for thought! Cheers.


    (I never post so if you don’t see my reply, don’t assume the worst!)

  • maggie15
    maggie15 Member Posts: 766
    edited June 2023

    mandalynn, I'm so sorry that you ended up with bone mets but nobody knows whether staying on letrozole permanently would have prevented that. One possible downside of continuing AIs indefinitely is developing endocrine resistance. There are many theories about how this occurs but it is still being researched. Most people have other treatment options if this happens but thanks to ILD everything other than AIs and SERDs is contraindicated if I have a distant recurrence. That is one reason why I am not currently taking AIs.

    Unfortunately there is no way of predicting what will happen to an individual and each person reacts differently to each treatment. I hope letrozole is effective and tolerable for you for a long time.

  • claireinaz
    claireinaz Member Posts: 662

    Hi everyone,

    Well, my urgency issues seem to have mostly resolved..and stayed that way. I found an article regarding 15 vs. 10 years of AI supporting longer use of letrozole…but I took aromasin. Here it is.

    https://www.bbc.com/news/uk-36455719

    To Mandalynn—I appreciate your honesty in your response, and believe me, this is really the only thing I've been thinking of since I went off exemestane: how long to stop and do I really want to? That's why I'm pursuing all avenues of tx. It may be a temporary break till I get my urgency sorted.

    Also this article indicating that "Thus, it is reassuring that the protective benefit of aromatase inhibitors appears to persist over time even after stopping therapy. ".

    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)33102-2/fulltext

    Both articles are supported by science.

    So what to do? I'm seeing my urologist tomorrow. We will have a discussion about trying another drug (but it also causes constipation, which I can't allow myself to have, since I am seeing a gastroenterologist about the possibility of IBS…argh). The rest of the discussion will be considering the use of sacral stimulation for urgency, or the Mona Lisa Touch. I hope they have a payment plan for that.

    I don't necessarily want to go off the exemestane…but at least it looks like (as some of you mentioned) the after effects of the drug don't necessarily wane immediately.

    If I can get the sacral stimulation or I tolerate the second overactive bladder drug, I'll go back on the exemestane.

    You'd think we could balance our quality of life issues for taking drugs vs. not. It seems one drug designed to protect us causes us to take other drugs to manage side effects, which have side effects, which…you get the idea. The black hole of drugs.

    I also have my first PT therapy session for pelvic floor exercises today. It may be all I need. Stay tuned.

    Claire in AZ

  • maggie15
    maggie15 Member Posts: 766

    Hi Claire,

    Thanks for posting the study about taking letrozole for 15 years as well as the article showing the lingering effect of AIs when discontinued. It's good that there is some research being done on longer term use of AIs. Just like every other treatment it comes down to weighing the pros and cons given your situation and the advice of your doctors.

    It's promising that there may be some non drug options for the incontinence. I'm with you on avoiding the black hole of multiple drugs. I hope the PT works well or, if it doesn't, another of the proposed options turns out to be a success. That 4% benefit of preventing recurrence seen in the British study seems like a big enough advantage to encourage you to keep going with the exemestane for a while longer if you can make it work.

    I appreciate the update. I'm in a different situation but I agree with the philosophy that knowledge is power and the experiences of others can give us additional perspectives. All the best and let us know how things work out.

  • claireinaz
    claireinaz Member Posts: 662

    Update-as the OP I thought I'd update here. I have made my first appt for the Mona Lisa Touch laser therapy for incontinence next month. I get a considerable discount as a BC survivor at my local doc office—$300 a tx (x 3) as opposed to $800 a tx-so I'm going for it.

    I took Gemtesa, the overactive bladder meds, for a week before they constipated me so now I'm taking every other day to see if that will help. I've been going to pelvic floor PT which seems to be helping.

    My MO agreed to let me take exemestane every other day (she said there is a new study on Tamoxifen that seems to point out that every other day is pretty much as effective as every day-at least statistically) and she thinks it would translate to exemestane too.

    My urgency is still there but not as strong and I'm training my bladder (feels like toilet training all over again) to calm down, hold more urine, and relax, per my PT. Is it easy? No, but it's all I've got at this point other than the every other day Gemtesa and the laser therapy coming up.

    I didn't feel comfortable completely stopping exemestane, and my MO agreed.

    Now I'm waiting to see a gastroenterologist regarding the intermittent diarrhea and constipation I've been experiencing. I may have IBS, but I can't see a doc about that for 6 more weeks. I'm doing the low FODMAP diet to see if it helps. It seems to have slowed things down a bit. So the constipation I thought I had from the Gemtesa might be due to IBS instead, but won't know till I talk to an expert.

    As a side note, my husband was just dx with prostate cancer—aggressive and high grade—and I'm dealing with some trauma from that. He's in the early stage of tx pathways, so we haven't begun yet. As a woman who lost a husband in 1996 to head and next cancer (I was 36) I've got a lot of trauma from that and from my own b.c. journey too. I have a great PTSD therapist though; she's helped a lot, and Lexapro has helped a lot too.

    Feeling a little weary of body issues and hyperfocusing on the physical right now.

  • maggie15
    maggie15 Member Posts: 766

    Hi Claire,

    Hopefully taking exemestane every other day will work well. When so little research has been done sometimes it is worth taking a course of action that seems sensible but has not yet been tested.

    It's great that you are getting a good discount on the Mona Lisa Touch therapy. All these side effects are due to breast cancer treatment. I'm glad there are some sympathetic doctors out there.

    The gastroenterologist may be able to help with your GI issues. I sympathize because I go through the same routine of constipation/diarrhea taking iron for anemia. I always carry a change of clothes with me and have been in some embarrassing situations because of it. My husband no longer asks why when I come in from a walk and run for the shower. It's a balancing act. Right now I am on a lower dose with fewer GI SEs but am getting more fatigued. I'll probably have to go back to a high dose and more time in the bathroom after my next blood test. It's a case of pick your poison but I don't get to choose since my doctor is more worried about my O2 levels.

    I'm so sorry your husband was diagnosed with prostate cancer. It's not fair that you have to deal with this situation a second time. I'm glad you have a therapist you trust to help you through this. They say adversity builds character but it comes to a point where you certainly don't need any more.

    Thanks for the update. I hope the Mona Lisa procedure works well and the gastro is able to provide some relief. Most importantly, I hope your husband responds well to treatment.

  • mandalynn
    mandalynn Member Posts: 21

    Hi all,

    Meant to reply sooner but I'm still in the early days of scans and dr appts to see exactly where I stand with my mets.

    I appreciate your comments (Maggie/Claire) and I totally understand every person's situation is unique. I really just wanted another "opinion" out in the universe here on bc.org about staying on AIs longer (loved seeing the article about that). Maybe someone else will see all of our discussion and it gives them something to pause and think about). There wasn't any other questioning voices when I was told to stop my medication (and that was just a few years ago) and now there is. Crazy isn't it?