Has anyone quit or reduced dosage of the hormonal therapy?
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I totally agree, daughterofbarb! When I went to pick up the tamoxifen, I asked the pharmacist if I can split the 20mg pill. She said yes, which I'm a little wary of because I have read that the pill shouldn't be split. Maybe it's propaganda, once again. Any way, after reading through the huge folded-up sheet that came with the bottle, I decided I'm not taking it at all. They still don't know, admittedly (on the sheet) if the liver is affected, etc., etc. There's so much they don't know about the drug. Well, that's not good enough.
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nomeds there is a 10 mg pill available. I take it twice a day because I find I do better the way. It is still a struggle some days though. one more year
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Nomeds, I understands yourr frustration that no research has been studied for lower doze. I do belive there must have been some kind of research as I am also stage 1a, 14mm tumor, lymph nodes negative, ER+ and HER2 neg and I can see from the various treatment plans that IF I was 60 y and not “just” 58 y Old and my tumor was 10 mm and not 14mm then no more treatment is recommended as surgery would the only treatment suggested. I am in Denmark, and has been lookimg at tha 2,5 mg letrozole pill for days now…. What was your ki67 and score? Maybe you should ask you oncologist what the riskorn reccurence is with and without AI …I cannot get a clear answer from mine as no onco score was calculated.
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I totally share your concern and view not to mess with our hormomes… I am 58, just diagnozed IDC, 14 mm and no lymph nodes affected (sentinel node just two ) ER+ and HER2 NEG, I am still looking at the 2,5 mg letrozole pill and is reluctant to start taking it… I did not have a onco score as Low risk so not calculated. Only ki67 at 10%. So what recurrence risk did they say you had with and without AI? I cannot get a clear answer myself
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Missbe, that's interesting that you're in Denmark and it sounds like they recommend no further treatment (other than surgery?) if your tumor was smaller (10mm) and if you were at least 60 yrs old? If I have that right, then if I lived in Denmark, what I'm choosing to do (not take antihormone pills) would be the recommended course. Mine was 10 mm and I'm 60. My Oncotype score was 12. I wonder if your ki67 score is something similar ... I haven't heard of that term? For my 12 Oncotype score, the recurrence risk is 3% with taking the pills, and she said it would be double that, 6%, with NOT taking the meds.
Am I understanding that correctly ... about the guidelines where you are? If so, that makes me feel so much better. And, I cannot see much difference between the ages of 58 and 60 ... I mean, really. That's so close. These numbers are all best guesses on everyone's part. Life is a gamble. It's all a roll of the dice.
Thanks for your input.
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missbee: we have pretty much the same dx. I was dx at 62. Coming up on 65 now and have been struggling with AI since 1/20. I am now trying a 3rd (and the last) one. My oncotype is 18. Looking at the info on Predict, hormone tx only gives me a 1-3% better chance of survival. I plan to take that info with me to my next appt. IDK that 1-3% is really worth the SE. Best wishes
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I quit Aromasin today. I've only be on AI's since June 2022. I also have a low grade tumor (tubular) No oncotype was done. Im 62 and have tried all three but cannot take not sleeping, low mood, hot flashes, stiffness, brain fog. My vagina has already shriveled up despite using low dose vag estrogen and reveree. My hair is brittle. I am already on max dose Lexapro. I do feel I’m a bit of a failure because I can’t tolerate side effects. I have OCD.and will obsess on whether or not I made the right decision. I just wish I would've had a mastectomy instead of lumpectomy + radiation. I have extremely dense breasts and endocrine therapy would have decreased density of my breasts eliminating need for annual MRIs.
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was on tamoxifen for fours months and developed type two diabetes (despite a very low carb diet and lots of exercise, to overweight). Not a happy camper…I was so hesitate to even start and totally felt pressured. They can suck it! I stopped taking it the day my blood came back. Side effects are no joke and I still wonder about all the issues that screwing with your hormones instigates!
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Gardengurl, NO ONE is a failure if they can't tolerate side effects! End of story. It has nothing to do with one's strength of character or any of that nonsense. Every opportunity I have, I'm sharing my experience and asking about others', and I am finding that more and more women are questioning the necessity of this additional therapy. It has all the appearances of overkill and CYA, and nothing to do with evaluating the actual hormone levels each individual has and prescribing an appropriate dosage accordingly, if any at all.
It's great that we're sharing with one another, because we are the boots on the ground and the ones having to live with this every day. I am also one to dwell on decision-making, and question and re-question myself. But I think we can reach that decision in our own time, on our own terms, and be good with it. I'm ready to move on with my decision to not take the tamoxifen, knowing that NO ONE knows what my outcome will be ... whether or not I take it. It's all a big guestimate.
I'm hearing about more and more women who are choosing to stop it or not start it, and it just feels like we're taking a little bit of control of our own bodies back. I know it's gotten to be cliche, but I can't help feeling such anger at the state of medicine where we are ... by god, we're going to make sure men can get an erection at all costs, but as far as curing cancer, well that's not as important, nor as profitable. Sorry if I'm on my soapbox. This situation can be intolerable.
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Buzzbomb, I totally agree with you. I think screwing with hormones does cause unintended consequences. I think using an estrogen patch for 8 years after my hysterectomy at age 44 likely contributed to my getting breast cancer now. And that's another reason I don't want to start tamoxifen or any hormone therapy. If I do, will I find out that 8 years from now, I will develop yet another health issue likely caused by taking that drug? Drugs on top of drugs on top of drugs.
Gardengurl, I hadn't heard that taking this treatment would affect breast density? I have extremely dense breasts also, and have insisted on having an annual ultra-sound in addition to a mammogram. It was the ultra-sound that detected the cancer, and not the mammogram.
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I know I sound like a broken record on this but I feel like side effects is an often missed used word. Many of the things that are labeled as a “side effect" of these drugs are effects of lower estrogen in the body. So when the drugs are working the way they are designed, our bodies respond differently to the lower estrogen (just as not every woman gets the same issues during menopause). Some things level out for people as their bodies get use to lower estrogen but other things start or get more pronounced for others. And then of course each of us had our own situations and can have so many other things that factor in in terms of risk/reward (for lack of a better term) to the decisions we have to make.Quality of life matters and so does being at peace with our own medical decisions. Like most things with breast cancer no decision is one size fits all. Wishing everyone peace with their choices
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Hello, I think I'm going to throw in the towel. I just cannot take the health issues and pain endocrine therapy has put me through. I've tried five altogether:
1. Tamoxifen - side effects have been: cardiac issues, including a dangerous heart arrhythmia, AFib, which makes my chances of having a stroke 5 times higher, as well as causes me shortness of breath, extreme fatigue, anxiety, dizziness. It also caused atrial flutter and supraventricular tachycardia. I have had two heart ablations for this as they were debilitating. Just had the second ablation Thursday. I have also had to have a D&C due to uterine thickening. I also experience severe mood changes, like rage. I want to scream at everyone around me and I can only imagine this is what roid rage feels like. My hair thins, I gain weight, massive hot flashes, insomnia, depression, back, hip and calf pain/tightness. I am now on two new heart meds as a result, a beta blocker and a blood thinner.
2. Toremefine: Also causes heart arrhythmias, but without the murderous rage side effect.
3. Letrozole : Put me in a hypertensive crisis, my blood pressure was through the roof. Had to D/C and now I'm on blood pressure meds still, two years later.
4. Anastrozole: Was doing fine on it until I hit month 7 and gained over 50 lbs. Then the debilitating joint and bone pain followed and I started falling down I was so stiff and weak. I could only shuffle across the room, and exercise was out of the question. I used to do triathlons but on arimidex I didn't have the strength to climb up the swimming pool ladder when I swam laps, and forget riding a bike. I had to stop the med and it took six months of physical therapy to get to where I could walk again. I now have a handicap tag for my car.
5. Exemestane: Same as arimidex but it also made me very depressed.
I don't want to stop taking these meds. I want to complete at least five years, but I don't know how I can. I will have to choose between heart failure or a walker, or cancer recurrence0 -
Wheatscapes - I am just so very sorry to hear about your situation. I have no help to offer, just moral support. These AI's are absolutely terrible and the dangers of them are so overlooked and downplayed by the medical community. I've managed 2.75 years on Letrozole every other day, but it is a real struggle and I totally understand the "throwing in the towel" feeling. I am very close to that myself, and haven't been through nearly as much as you have. I've even declined to try the others, because all of that comes with its own problems too. I'm going to try to at least make 3 years (will be in middle of next January), but then I don't know what I'll do. I think the side effects are getting worse.
I wish all the best for you, and hope that whatever you decide winds up feeling very right for you and helps improve your health, not hurt it.
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Wheatscapes, what was your Oncotype score? From your stats, it looks like you had Stage 1A, grade 2, 1 cm? That's what I had, w/ an Ocotype of 12. However, I had HER2- and yours was +. Maybe that is the factor that makes the endocrine therapy more essential? Because for me, the 3% recurrence chance with ET vs. 6% chance without, seemed low enough to me to forgo the horrible ET side effects. Your side effects sound incredibly terrible, and maybe worth stopping? But I don't know all the details of your situation. I'm so sorry for what you're going through.
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I do so understand the rage you felt Wheatscapes. I understand as well as the mental confusion about taking-AIs / not-taking-AIs that all of us share. Lower estrogen was MURDER on my emotional state and ability to sleep. It's now months since I quit the Anastrazole and refused to take another AI. Back then I hated to go against my doctor's advice.
Now, I feel so much better overall physically and mentally. My mind has stopped doing the "circle dance" from "was I smart to stop or stupid?" and I am no longer questioning myself. Yes, it was a roll of the dice to go against doctors' advice, but I never could get a reasonable answer as to exactly how it would help me: just "best guess" type answers. So my own answer was to stop and be happy about it.
I thought of starting a new thread for sort of like a "roll call" of those who aren't taking AIs, and a yearly check in to state no-evidence-of-disease/recurrence. That would make real life statistics viewable to all of us. What do you think? Would you sign up and come back to that thread once a year to "report in"?
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oldladyblue, You just summed up exactly how I feel to a "T"! Well said! Yes, yes, yes, let's do exactly what you said and report back our experiences. That's exactly what the medical field should have been doing all of these many years. Let's do it for ourselves. I would love to help with this. What can we do to get the word out? Thank you for your thoughts and ideas.
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OldLadyBlue - Really like the idea of the "Roll Call" thread for those who have quit the AI's. So far I haven't quit and it is a daily struggle, but I would definitely watch and monitor a thread like that. Great idea!
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OldLadyBlue and others - I like the idea of the "Roll Call" thread for those who have quit AI's as well. I began my journey taking Anastrozole that was prescribed by my oncologist, I took it for about 2 months and side effects for me were aching all over - I could not even roll over in bed without hurting, indigestion, weight gain! My vision also became blurry, so I don't know how long that I would be able to continue working at my job - all day on computer - I have 28 years in so close to retirement, hope to make it until 30 years. I got off of it after two months because I would have vaginal bleeding even though my gynecologists testing indicated that I was post menopausal. Because of this, I chose to try Tamoxifen. This too had awful side effects for me (leg cramps, early onset cataracts, thickening of lining of uterus, continued vaginal bleeding every 4 months, which had to be investigated each time it happened). Not one of my doctor's could give me any answers, only deal with side effects as they happened. I took Tamoxifen for 3 years then I fell and fractured my ankle. I stopped taking it for fear of blood clots from the injury and didn't want to try AI again due to weakening of bones being yet another side effect! As luck had it, I ended up having to get my ankle surgically repaired (non union) and I found out the day before that surgery that I have a genetic blood clotting disorder, so Tamoxifen is out (also Ralixofene - not sure of spelling). I cannot take any drug that causes blood clots as side effect. Also, Tamoxifen side effects really continued after I stopped it - primarily constant vaginal bleeding - horrible, I had a condition called cervical hyperplasia, which my gynecologist said was not yet cancer BUT could turn in to cancer, so I elected to get a complete hysterectomy / oopherectomy - I was not taking any chances! I have really been through the ringer. (I know everyone on this board has as well) My oncologist finally told me that taking medication is no guarantee that BC won't recur, so she was OK with me not taking any medication and we will make a plan if it comes back. Soooo, I would be interested in Roll Call Thread as well.
Celand
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oldladyblue, I quit after taking AI for only 6 months, that was exactly three years ago. Tomorrow I am going to meet with my MO again to revisit the use of an AI. I truly wish our decisions would be final, but changes in our health, cause us to revisit the issue, something I REALLY never thought I would have to do.
I don't know what I will decide, but I know I need to review my situation. I don't want fear, either of cancer or AI side effects, entering the picture for my appointment. I want to approach it with an open mind, but also with specific items to discuss based on my body, my cancers.
I think I may have posted here recently, honestly these days I forget which topics I post on. If not, I was diagnosed with breast cancer for a third time in August of 2022. Today is week three of post mastectomy of my only remaining breast and I hope to get my last drain removed later this afternoon. I am 100% not concerned about this recent cancer, DCIS with microinvasion, of being an issue. I am still focused on the only one of the three Dx's that holds that possibility, ILC in 2019. I have had breast cancer three times, but each was a new cancer, not recurrence. Yet, that is something to take into consideration. I was lucky as all three times were caught early.
AI's/Tamoxifen and knowing our risk/benefit of using them, is truly the most difficult to decision to make. Yet, we are the only one who can make that choice, regardless of what anyone else does.
I am as prepared as I can be for my appointment tomorrow. I typed up my concerns, things I really need to discuss and get answers to. My (new) MO is exceptional and I totally trust his judgement. I never had that before with the other two MO's I had, even though both were nice and seemed to know what they were talking about, something was missing. I am going with a positive attitude, my list and expecting only to leave the visit with more knowledge and hopefully knowing if I am keeping the course I am on or trying an AI again.
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Oldladyblue and others expressing interest in a new "roll call" thread. We can create a new topic for this. Let's decide how to do this together, so that everyone knows where to go for this new topic. Ideas?
Thanks,
nomeds
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Mavericksmom - So sorry to read about your situation. Can't help but think of the old "NOT FAIR!" I really hope you are able to come to a resolution that works for you. I totally agree with you that whether to take the AIs or not is probably the most difficult decision the majority of us have to make, and we have to make it alone.
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Hello Everyone - I like the idea of the new “roll call” thread. While I have recently started Anastrozole (taking every other day after discussing w my primary care) I’m not sure how long I will continue. I am very interested in all the info I can get and agree research seems to be lacking on forgoing AI’s altogether or taking a lower dose. Let’s keep sharing. Mavericksmom, I’m eager to hear what your MO has to say. Please post.
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I just started taking 10mg tamoxifen per my onco. I got a second oncologist just for hormone therapy. Dr. Link in SoCal recommended 10 mg. for me. He said they did studies for 10mg and it proved just as effective, but because tamoxifen is generic, there is really no impulse to do studies for 5mg. I'm only 3 days in and hoping I have little to no side effects. He did tell me about possible night leg crams and said if they occur to drink a glass of quinine before bed.
I am post menopausal and opted for the tamoxifen based on 1. the high bone loss with AIs and 2. if I took AI's then I'd have to take Prolia as well which then would lead to more osteoporosis drugs. I am trying to take less drugs, not more and the percentage difference between AIs and Tamoxifen seems negligent.
I figure if I do not do well on 10 mg. I will switch to 5 mg.Can anyone comment if they've had many side effects on 10 mg?
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I had my visit early this morning with my new MO and I will be going back on Letrozole as soon as my drain is out.
I truly wish there was a better way to know if the benefit outweighs the harm of taking these drugs, but until then, the best we can do is make those decisions and hope for the best.
I stand behind my feeling, that taking or refusing to take an Aromatase Inhibitor or Tamoxifen, is the hardest, most gut-wrenching decision many of us will ever make when it comes to breast cancer treatments.
I admit, I still feel slightly confused, but I am dealing with my current health issues. Odds to me don't really matter because I had breast cancer three times and what are the odds of that happening? Also, my sister had breast cancer and non-Hodgkins Lymphoma at the same time and was told she would have a less than 1% chance of getting a third cancer called MDS, due to treatments of those cancers. Not only did she get MDS, but it took her life! Ironically, she was in remission for both original cancers.
While statistics and odds are helpful in deciding what to do as far as breast cancer treatments are concerned, it is still anyone's guess as to who will truly benefit and who won't. Maybe someday there will be better options than Aromatase Inhibitors and Tamoxifen. Until then, I make my decisions and stick with them until new health issues or information causes me to re-evaluate the choice. Changing one's mind isn't failure or admittance of a former decision being wrong! It is moving forward!
I wish everyone who is dealing with whether or not to take an AI/Tamoxifen, the ability to step back, look at all the information available, apply it to you and your cancer and base your choice on that! MOST OF ALL, TRY NOT TO LET FEAR BECOME PART OF YOUR DECISION!!!!!
*****DO NOT LET FEAR OF CANCER PUSH YOU TO TAKE AN AROMATSE INHIBITOR OR TAMOXIFEN
BUT ALSO
******DO NOT LET FEAR OF SIDE EFFECTS CAUSE YOU TO REFUSE TO TAKE AN AROMATASE INHIBITOR OR TAMOXIFEN!
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I started on Anastrazole in January of 2020 and took it daily until June of 2021 when bone pain in my lower left leg became excruciating along with an increase in joint pain. I then started Letrozole in August of 2021 and took it every other day until about 3 weeks ago when I stopped. I saw my oncologist and explained I was having really bad back pain and she suggested having a clearing out period and then trying Exemastane. She is not on board with every other day dosing because of lack of studies on it. Lo and behold back pain pretty much gone and I’m starting to feel like a different person - I even power walked through Costco even though Ihad bad knees before the AI’s. My next mammogram is Nov. 21st and I will stay off until then and make a decision. I worked as a server at a very labor intensive job for 20 years and after being off during the pandemic and the bone and joint pain that is out of the question now. I took my measly social security at 62 and I’m 64 now and just don’t want to be miserable.
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I took arimidex for five years 18 years ago. It may have worked as I didn’t have another cancer until recently. I must admit that being 18 years older I am not looking forward to letrazole as I remember how achy I was before.also my bone density went dowm the first time. It’s a struggle
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Thanks to all who've shared that you would participate in a "roll call" thread. I was very happy to see support for the idea. Nomeds, yes, we should all talk about where is the best place for the new thread. and about the outline for each future post i.e. how to concisely state our inputs. Hopefully, it will be continuing on for years into the future. It could be a sort of statistical fashion with easy to see outcomes from us who choose to stop taking them. In my mind, we would all come back to report in each year.
Maybe an example post for me personally would be:
Started AIs Mar 2022, Stopped AIs Jun 2022, NED Mammo Aug 2022
Then I would post again in August 2023, 2024, 2025, etc..
Maybe a moderator or an "old timer" could give ideas on how to set it up? I've never started a thread on this site and consider myself a "newbie".
Ideas??
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I’m in for the “roll call” thread! My recent blood tests, that revealed diabetes and odd thyroid numbers (I have Hashimotos and these results were so different than any tests I’ve had before), will be followed up in six months and I’m very curious as to the results. Posting those numbers may just help someone else
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oldladyblue, That all sounds good. I sent a private message to the moderators asking about starting a new topic, and they responded with a link to how to do it ... they said we can do it ourselves, so I'd be glad to do that for us.
Where to put it? What to call it?
I like your idea of keeping it short. I have a newbie question, what does NED stand for? Is there a key somewhere to all these acronyms (sometimes I just can't figure them out)?
I would personally love it if people could check in even more often than once a year. Maybe that's asking too much, but I for one am new to this experience (diagnosed in May 2022) and am in the process of finalizing my decision of whether or not to even start tamoxifen. I've currently landed on NOT starting it at all, and all the posts here are helping me feel good about my decision (TY ladies!) but I never say never and want to keep on top of revisiting that decision ... at least for a little while (I really need to move past this, I know).
I echo oldladyblue in asking for ideas for starting this new topic. Please share your thoughts, and thank you!
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Buzzbomb, sorry to hear abut your thyroid numbers For what it's worth, my thyroid numbers were also wacky for a time. But it was the radiation, which included my supraclavicular nodes, not the AI that was causing it. And the good news is that the numbers did return to normal after several months. I hope yours do, too!
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