Has anyone quit or reduced dosage of the hormonal therapy?
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Thank you, again, Beesie for your brain-food! Regarding 'eyes', I did see my eye doc this week for my annual visit. A touch of blepheritis and dry eye, both easily treatable and likely due to old age and AI use. Apparently, blood vessels throughout the body, including the eye, are loaded with aromatase and ERs. Estrogen normally helps maintain blood vessel relaxation and dilation. In the absence of estrogen, blood vessels can 'stiffen' and pressure can increase. But, fortunately, no glaucoma for me this year!
I have had a problem with the one size/dose fits all drug mentality. I'm a lite-weight, low %body-fat person who was inundated with SEs from my AI. With MOs blessing, have been on 1/2 dose for last several years with reduced SEs that I can treat myself and that I know will disappear when I've finished treatment after 5yrs. I did do the due diligence and found the clinical phase I-III results with exemestane that showed a single 25mg dose suppressed aromatase for almost 72 hr, whilst the 12.5 dose suppressed for a little over 24hr, and these were in women who were bigger than me. Have always thought that if AIs were prescribed based on one's BMI in birth control-like packets with active dose and appropriately spaced placebos, there would be fewer SEs and greater compliance. But, alas, no money for those types of very complicated studies!
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Murfy - Thanks very much for sharing what you've learned about the eyes. Very interesting about how the vessels are so connected to estrogen and subsequently affected by the AI's. It's no surprise to me, given how my eyes can get sometimes; dry, irritated, and blurry. I take Letrozole and not exemestane, but I think there is probably something with all of these AI's where lower and intermittent doses could help many. I think sometimes they try to use age as a handy excuse. I'm 69 now, but I can say I never had all sorts of these problems that they like to claim are "age related" until I started taking Letrozole. I don't doubt that age can cause some of these problems in the broader context, but when all of a sudden you experience so many supposedly "age related" problems that are also known drug side effects, it's hard to believe that it isn't primarily the drug.
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Thank you, ThreeTree and Everyone for your valuable posts. I felt so alienated and bewildered when my MO only concurred that ERM is a "very rare" side effect of my AI after I gave him my printed PubMed articles. He didn't agree with me until my f/u visit when he had had a chance to read and research for himself. Then he asked me to have the ophthalmologist send him a copy of the Eye Prism Institute (special ocular surgical centre) report. Go figure! How many other nearsighted, older women will experience vision impairment due to AIs without proper full disclosure and consent? I am not saying the AI "caused" my eye condition. I realize there are likely many factors involved (my age, my diabetes, diet, lifestyle, etc.) but even if it is only one of the many factors in the web of causation, I'd like to eliminate it.
Needless to say, I was shocked to discover the correlation myself while browsing PubMed articles (Research Methodology was part of my undergraduate studies). From my perspective and experience with anastrozole, I feel more MOs should disclose this to their patients (in particular, those who are older and nearsighted).
Salamandra, I am going to seriously reduce my carb intake, further than I am already doing in the hope that that will help. Thank you for your post! I don't know what else to do and that is my dilemma. I have started supporting CNIB Guide dogs, so at least my compassion has grown! At my age, I've been blessed with a good life and am grateful for it.
If I were younger, I'm sure taking an AI would carry more weight on the benefit side of my personal risk-benefit scale. I am grateful for the wonderful medical care I have already received. I am simply voicing my concerns so that others may be aware. I am not a litigious person, despite working for a law firm, I'm just really focused on full disclosure.
Beesie, thank you for the reference links!
Thanks, everyone, for your posts and links! You are so informed and articulate.
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Thanks to all who have commented about my previous post. It's nice to know that there are some people who've read it.
ThreeTree, I've experienced "side effects" both ways. When I was diagnosed the first time, I was just going through menopause. I opted out of taking Tamoxifen, and yet over the next couple of years I experienced many of the same "side effects" that people here, those taking Tamox. or an AI, were complaining about. Since my second diagnosis, I've been on Letrozole. I'm 65 now, and I'm experiencing all sorts of aches and pains and other things. In speaking to my MO, there are some things that I didn't attribute to Letrozole that my MO actually thinks are caused by Letrozole. And there are other things that are not common or known side effects that I think might be caused by the Letrozole and for those, my MO says "maybe" because as she explained it, estrogen affects pretty much everything in our bodies, so stripping the body of estrogen can cause side effects anywhere in the body. So even when I described something that she's never seen as a side effect of Letrozole, she's acknowledged that it could be caused by the Letrozole.
The one good piece of news I've had this week is my DEXA scan. My baseline scan prior to starting Letrozole showed osteopenia. A second scan, about one year later, showed no change - I was really surprised about that. Now, another 1 1/2 years later and after 2 years 9 months on Letrozole, my latest DEXA does show some deterioration, particularly in the femoral neck, but only very little, well below what would be considered significant - and it's possibly what I might have experienced even without the Letrozole; fortunately I remain well within the range for osteopenia and have not progressed to osteoporosis.
Of all the possible side effects, osteoporosis is the one that I was pretty certain that I would get hit with since bone/joint/spinal health has been one of my issues since my early 40s, and I have both osteoarthritis and osteopenia. This week's results were a pleasant surprise and provide proof that "inevitable" side effects are not necessarily inevitable.
Of course I have 2 years 3 months to go on Letrozole so we'll see what that brings. Fingers crossed on that!
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Beesie - Maybe those side effects you had after declining Tamoxifen were menopause. The AI's cause a lot of menopause like symptoms - and more! I think one of the hardest things with all of this cancer treatment and aging combined is trying to figure out "what's what", when we have symptoms. Is it the drug? Is it "normal aging"? Is it just "something that's going around"? Is it just annoying or is it serious? It can all be just so confounding. I think I'd like to have your oncologist instead of mine. Her comments to you about how estrogen affects everything in the body, so side effects can occur anywhere in the body, jives with what I have come to believe from reading various things on the internet. I don't know that all doctors would subscribe to that philosophy, but it works for me. Sounds like you are lucky to have her.
Also, congratulations on the Dexa results! The potential bone deterioration side effects of these drugs are pretty scary, so it's nice when it looks like you might not get them. I showed both osteopenia and osteoporosis (I also have mild osteoarthritis) at the time I started the Letrozole 2 years ago. After a year, nothing had changed, but once again, "what causes what"? I did deliberately start eating dried plums and consuming lots of extra virgin olive oil when I started the Letrozole, as I'd read that those things can help with bone building, but I have no real way to know if those things helped at all or if the "no change" status would have happened anyway. I think my next Dexa won't be for another year, so we shall see. Some do get through these drugs with no real damage to their bones, but others I've read about have serious bone loss within a few short months. Very glad that this bone situation is looking positive for you!
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I don't get on here much, just glancing thru things, thinking maybe I'll come back. Thank you, Beesie, for all that information. Not sure someone is having trouble with muscle cramps, leg cramps, I take magnesium glycinate and magnesium taurate and it helps me. I used to put a bar of Irish Spring in my bed at night and that seemed to help too (sounds nuts, I know). The magnesium is pretty good at helping now. My husband's doctor suggested putting a cardboard box over your leg to keep the blanket off. Some nights, if I feel it starting, I pop my leg out of that blanket.
I've been on anastrozole almost 3 years and am having trouble with my knees. I saw my family practice today and she said it was my hormone pill. Sigh. I had nerve pain problems in my right wrist last year and wore a brace like 3 months, after about 7-8 months, it finally settled down, and now it's coming back in my other wrist. I was looking for help and saw an article on this site about vitamin D, and my oncologist said he'd test it next time I saw him, maybe I'll take a big dose and my knees will feel better. I don't want to quit, but I sure feel like crap. I do take glucosamine/chondroitin/MSM and I think that helps, well it did. I need stock in vitamins.
Wondering44, I remind myself daily to be thankful for this little pill that saves my life. Not all of us are so lucky, are we?
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Ladies, today my MO recommend I move from letrozole to exemestane. He said there is 50% chance I will have less SE on exemestane.
Any of you has experience with exemestane? Pros and cons comparing to letrozole?
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Sajescents - I am about to go on AI and I too have elongated eyeballs with myopic macular degeneration. Now, after reading about side effects, I am even more afraid to go on them. I had DCIS in 2013 with no additional therapy after surgery. In 2021, I had IDC in the other breast and wonder now if had I completed endocrine therapy in 2013, would I have a recurrence just 7 years later? I am going to give it a try because of the recurrence, but this is an additional worry. Thank you for posting and sharing your knowledge. Let me know your progress.
Best, Thora902
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LillyisHere-
Yes! I started Letrozole in March 2020, then switched to Exemestane in Nov 2021.
Letrozole symptoms were: joint pain, fatigue, urinary incontinence, retina issues (which may or may not have been connected to Letrozole), leg cramps, and severe reflux. The reflux was so severe that I was about to see a GI for it. Then I switched to Exemestane.
Since starting Exemestane: reflux is almost gone, incontinence is much better and leg/joint pain from the hips down is improved. I can exercise again on the treadmill. This is a much easier AI for me. There is still joint pain and some fatigue, but not as much. I do have more frequent headaches, but not daily. I can live with these symptoms, and being able to exercise again is a plus.
However- The issue now is pain in my forearms, especially the left wrist. This pain seemed to come on very suddenly after starting Exemestane. It was so severe that I was sure that I had fractured my left wrist!
My PCP sent me to a hand doctor who diagnosed De Quervain's Tenosynovitis and severe arthritis in my left wrist. There are similar but less severe symptoms in my right forearm and wrist. No one seems to know if there is a connection between the Exemestane and De Quervain's, but most likely there is not. I'm working on this issue now with the hand doctor. A second Dexascan showed very little change from one year ago.
So I'd say it's a mixed bag with these drugs (including Tamoxifen before Letrozole), and we trade one set of symptoms for another. For me, reflux and incontinence were the daily symptoms of Letrozole that I couldn't live with for the next 7 years. I can mostly function on Exemestane, and time will tell about the hand problems.
(I can also say that I felt almost back to normal on my breaks between these drugs. So the advice from doctors that this level of joint pains and fatigue are a normal part of aging was just wrong!)
Best wishes for better days on Exemestane!
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Thank you so much PrincesButtercup. Do you take it before bedtime? The reason I'm asking is that one of the main SE is insomnia and I wonder if giving more hours to process this medication would help e bit with insomnia.
I had De Quervain's Tenosynovitis on my right wrist when I had my firstborn child 18 yr ago. I went to a few specialists and they told me that it is inflammation of the tendon that goes through the bone and it swells and creates friction with the bone or something like this. They all recommended surgery because the same movements of changing the diapers would make it worst. My Mom begged me not to have the surgery and promised me to help with the diapers. I also put on the wrist-hand brace during the night. It was gone in a month and it is been 18 years that I don't have any symptoms. I wonder if low estrogen from childbirth influenced on creating De Quervain's Tenosynovitis. Maybe you can try the hand brace during the nighttime? I am glad I didn't hear the doctors who recommended surgery.
A normal part of aging? I don't really believe this because I aged 30 years in 2 months of letrozole! Same as some scientists are saying that cancer cases are going up because people are living longer. What about cancer patients under age 50? Not an excuse for not finding the cure.
To Moderators: I am sorry I opened another forum for Exemestane. Please feel free to move it where you think it fits better.
Thank you.
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LillyIsHere,
That's interesting about the low estrogen theory for De Quervain's. I have a splint for the left hand which I wear all the time except showering etc because of the wrist arthritis (hand doc says I have no cartilage left in the joint where the thumb meets the wrist). Anyway I feel like these AI drugs just suck the estrogen out of the body. I've already had a complete hysterectomy so there is really no estrogen to protect my bones and joints now. Good for preventing cancer, though. Surgery has not been mentioned yet, but steroid injections if the splint doesn't help. Even with the splint on, I wake up in pain in the middle of the night.
I've had a lot of insomnia over the years, and with many things going on (husband with cancer, covid worries, adult-children-out-on-their-own worries) it is hard to pin down the cause. I do take my meds at night only because that is when I can remember to do it. Morning would make more sense, though!
Buttercup
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LillyisHere, I also feel I've aged terribly on Letrozole! I didn't look/feel this bad 2 yrs ago.
PrincessButtercup, I was also dx with Q a few years ago and surgery was recommended. I never had the surgery but did have cortisone injections a couple of times (very painful). Last visit to that dr his PA said he didn't know why I was seeing him if I wasn't going to have surgery. Very rude and I never went back! For whatever reason the pain went away on its own. BTW they said 4–6-month recovery, I was still working (dental hyg) and didn't want to take that much time off work. I did change the time I take Letrozole to ear;y afternoon which seemed to help insomnia. Seeing oncologist tomorrow and am going to ask to change to a different AL.
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Thank you Ladies. My understanding is that letrozole is more powerful than exemestane. MO told me that all SE I had were telling us that letrozole was working. I didn't ask him to change, he suggested when I told him I feel like my grandma. He even helped me wear my shirt and opened the door for me. I thought it was funny or he really thought I was looking like an old lady
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hmmmmm interesting we've all had wrist problems, me too. Last year it was the right, I wore the brace about 3 months, and it still hurt, I saw a chiropractor, which I do not normally go to, I think that was the first time, and he wanted me to tape it with athletic type tape, and I think that might actually have helped me, but I'm allergic to latex, so I had to take it off. Now, the left is hurting. I did do these exercises on the right, and it seemed to help. https://www.healthline.com/health/de-quervains-ten...
I am just grateful they both didn't hurt at the same time!! I had one hand to wash my hair and wipe my behind. Might I also recommend a bidet. Yes, I know, nuts am I. My husband got one for himself, but when your wrist hurts to turn, it is a lifesaver!
And aging, oh Lord. 50 to 70 in a month. Wrinkle city. Plus my eyebrows never grew back. We are all beautiful though. We are living life.1 -
MissouriCat,
My wrist splint is a specific type that keeps my thumb angled out at about 45 degrees. It also keeps me from using my thumb, and I think this may have more to do with my arthritis in that joint. I can no longer open jars or turn door handles. Even picking something up with my thumb and fingers is quite painful.
I wish that oncologists would stop telling me that my symptoms aren't typical, and then insist that they must be due to something else besides the AI. I've had enough breaks in between drugs that I can clearly see that the AI is causing the pain. We need oncologists to know and appreciate what the range of side effects could be, and to help us find a way to manage them.
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PrincessButtercup, I agree with your assessment. The common thread here is joint pain. I'm 64 and sure I had aches and pains prior to starting AI but it certainly has gotten worse over the last 2 years. Saw PA today and she recommended a 3-week break and then start Anastrozole. She said it has a slight anti-inflammatory action. We shall see.
Missouricat, Good Lord! My wrinkles have gotten horrible, and I wasn't that cute to begin with. I feel like we need SOME estrogen to maintain some skin quality, but I guess thats gone out the window.!
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Princess Buttercup, I totally understand - no door handles, have to be careful picking up laundry out of the dryer. Sometimes picking up my large cat can hurt. My oncologist did offer a week off to see, but I know that is what it is. I have an appt at the end of the month, we'll see how it goes. I like my doctor but I have to come up with my own ideas, he has a few, I think he likes to see what I can find. I love this site. I read on here you can try a big vitamin D dose and asked him about that and he is going to check my level at the end of the month. It was a big dose like 50,000 IUs. Link: https://www.breastcancer.org/research-news/20091215-7
KID1919, I quit looking in the mirror as much as I can. Some of my friends like posting pictures of themselves on social media, and I understand we all want to be pretty - but I have no eyebrows. I guess it teaches you these things in life and how to laugh at them. I see those hyaluronic acid creams, no no no for us. We will be wrinkled beauty queens!
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I joined a support group on Facebook and it has been mentioned that many anastrozole users are now recommended 7 years instead of 5 years of pills. I thought perhaps we should mention that. And I was wondering if anyone else suffers from tinnitus? Thank you.
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I tried two different AIs for a total of 4 months and recently stopped taking hem. The joint pain in knees, hips and ankles, not to mention the insomnia, body aches and other side effects, we’re robbing all quality from my life. I stopped the AIs after a long talk with my oncologist. I’m in a drug washout period now and within one week of no hormone suppressing therapy began to feel so, so much better! I’ll be starting Tamoxifen in 2 weeks for a 30 day trial and then re-evaluate. At 67 I’m willing to live with more risk of cancer possibly returning. It’s much more important for me to be able to chase after my grandsons than chase after a slightly lowerpercentage of risk. (A very individual decision obviously so no judgment here!)
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MissouriCat, why are hyaluronic acid creams a no,no? I don't use them, I'm pretty sure it's too late! LOL.
I recently switched to Anastrozole, my feet feel better, hands NOT and for some weird reason my elbows hurt like heck. I complained to onco about the SE. She wasn't very impressed. On the way home I was thinking about her attitude but then I had the thought that she sees people way worse off than me so I should quit complaining. And some of it could be the crummy weather. Cold and damp. Spring can't come soon enough.
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Abigail, your the 2nd oerson on this forum to mention a test that determines recurrence or metastasis risk with anti estrogen therapy. I haven't heard of this and would like more info. You called it a Mets test. I am 70, had on Onco score of 17, so no chemo. Would like a test that would tell me of recurrence risk with or without tamoxifen.
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hi EauClaire - not sure if your question was meant for me or another member named Abigail. I’m not aware of any specific test, but there are calculators of recurrence risk for hormone positive that take into account factors like stage, grade, age. I was 62 and took anastrazole for several months while awaiting my BMX with DIEP recon (it was deferred 4 months due to Covid) and I had bad SEs. My oncotype was 6 on the side with ILC and 11 on side with IDC (yeah, diff cancer type on each side…) so no chemo. Tumors weren’t reduced by the 4 months taking them - I had mRIs before and after those 4 months. After surgery was told no radiation needed. So I asked the MO I saw them to tell me the chances of metastasis both with and without taking an AI. She said 3% chance with taking it and 6% without it. So risk is 50% reduced taking it but given my risk is low, for a 3% less chance I opted not to take them. If I was younger and especially if I was younger and had children I would have made a different decision, tried other brands of AIs but for me, in my spesituation I opted not to do so
Abigail
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hi. I am on Letrozole for 2.5 years. Beside joint bone pain I was diagnosed with osteoporosis. Now I am taking risedronate to fight it. I had some periodic constipation from Letrozole and calcium but after resedronate it became chronic. Do you have such se and what you do to solve it without resorting to laxatives every 2-3 days. I am pretty saturated from prune juice and prints and even those sometimes are not effective.
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Hello, sorry, I thought the page was having problems with the discussion boards (I was wrong!) The hyaluronic acid, I've read on here somewhere, maybe the triple positive board, if you've had hormone positive cancer you shouldn't use that, I don't have any links or anything, I'd have to go and try to read about it again, I can't remember! And Margun, I take magnesium glycinate for cramps and it also helps you avoid constipation problems too. I hope everyone has been doing well, happy April, spring is coming quickly now. Hugs x
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Eaks....I just started Letrozole today and if the SE are horrible I will stop. I plan to start these every other day and my oncologist thought that was ok. These drugs look like they have a long hang time in your system and I figure better than nothing to try every other day. After going through chemo, rads, and herceptin I was not going to go on these at all. It really is our choice to decide what to put in our bodies. I am older , live alone and quality of my life to be able to take care of myself is extremely important.
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I need help please:) this is my first post so please bear with me
I’m considering stopping hormone therapy. Backstory bc unable to properly set up my profile: I was dx 8/2021 with idc and dcis stage 1A w/ oncotype score of 9. Cancer was er +/pr+, her2-. I had lumpectomy 10/2021 but border was not clear. They followed up with bilateral mastectomy 12/2021 w/ reconstruction. After BMX, I was on tamoxifen for a couple of months. After my reconstruction tissue expander exchange surgery, I was dx with bilateral pulmonary embolisms. Onc instructed me to stay off of tamoxifen and said we need to decide how to proceed. She gave me three options:
1) go back on tamoxifen and take blood thinner for the entire 5 years
2) have my remaining ovary removed (previously had hysterectomy with one ovary removed) so that I go into menopause so that I can take AI’s.
3) stop hormone therapy altogether.
I’m leaning toward option 3 but would like to know what effect hormone therapy would have on reoccurrence, etc
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Blessed girl, welcome to the forum. I'm sorry that you find yourself having to make this difficult decision. You didn't say how old you were, since that would play into your decision as well.
There is of course no easy answer to your question, but my personal opinion is that you should at least try to find a treatment that works for you if it is possible. I actually started with your option 2, except it was for different reasons. I tried 3 different AI's and couldn't tolerate them so am now on Tamoxifen. If it doesn't work for me either, I can at least have the knowledge that I've tried all the options. I can certainly understand your hesitancy to start another anti-hormonal therapy after having a dangerous side effect. I guess you have to weigh whether the possible risks to your health are less than the risk of recurrence. It's a tough call, and hopefully some others will offer other perspectives. I wish you all the best!
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Blessed - sorry you experienced the blood clots as a side effect from Tamoxifen. For me, I think that would take that particular medication off the table since you would have to try and manage by taking another potent medication. You don't mention your age and I assume since you went back in for a double mastectomy that you did get clean margins.
I copied some text from a post from Beesie, one of our most valued and knowledgeable members about additional information from the Oncotype testing results:
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If your MO is sending for an Oncotype score despite your tumor being only 5mm, my suggestion, regardless of the score, is that you insist that your MO run the Oncotype RSClin computer model once he has your score. This is a model made available to MOs by Genomic Health (the Oncotype company) that takes an Oncotype score and factors in the patient's age, tumor grade and tumor size, kicking out a new recurrence risk estimate. Very few MOs use this model, although they all have access to it and it takes two minutes to run. It will provide you with a more personalized recurrence risk based on whatever your Oncotype score turns out to be. RSClin: A new tool for 'TAILOR-ing' treatment in early breast cancer
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You should have a direct conversation with your MO to utilize this tool to determine your individual recurrence risk based on your own tumor size, score, and age. That should help you determine whether or not you want to pursue ovarian suppression/removal + AI
You may have to push a bit to get your MO to run it but please do. You want to make a fully informed decision. My best to you
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Blessed, I agree with rah2464. The more info you have the better.
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thanks for all the information:)
I am 43 years old and they were able to get clean margins from the mastectomy. It does worry me some that they were not able to get clean margins in the lumpectomy and that I didn’t have the mastectomy until 10 weeks later (due to hospital restriction from Covid). The surgeon and MO have both said that it’s not a concern bc it was the non-invasive portion of the cancer that they didn’t get the clean margins on the first time with the lumpectomy and that it’s ok bc the non-invasive portion doesn’t spread, but I still worry about that.
Has anyone had to have a hysterectomy or ovary removal to put them into menopause to take an AI? If so how was that tolerated? I have a lot of concerns with that option: the thought of another surgery scares me due to the risk of clots, and I hate for my body to be put into instant menopause (I assume there would be no hormone supplement/assistance given since that’s the problem in the first place).
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