Has anyone quit or reduced dosage of the hormonal therapy?
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Hi. I've been on Letrozole for less than a year. In that time, I've gotten trigger thumbs, which I had orthopedic dr do injects to subside it. In addition, I have two "dot" floaters along with some blurriness in both eyes. Retinal specialist claims meds have nothing to do with floaters. I am nearsighted. Looking at a computer screen is terrible. Orthopedist said I may be predisposed to trigger fingers and the med may've taken me over the edge to get them now. Sorry..... but I think the Letrozole has LOTS to do with this. I'm 65 years old.
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I went ahead and started the "roll call" thread. It's been eating at me, the idea, so I just created it in this Hormonal Therapy forum and it should show up under "active topics" if you want to join roll call :-) https://community.breastcancer.org/forum/78/topics...
To answer a few posts earlier: NoMeds - Thanks for your posts, yes, the new thread was easy to create. I hope you don't mind that I just went ahead and did it. To answer your question: NED means "no evidence of disease". Yes, there is an abbreviations list posted up higher on the left of this page under "Useful Resources" Yes, Roro123, some people have tried cutting down the dosages of their AI or Tamoxifen, or started taking it every other day. I tried every other day with the Anastrozole, but it changed nothing for me. Quitting was the only thing that helped my severe reaction to the AI.Gosh, MavericksMom. Sigh, I am just shaking my head at what you've been through. No statistics would never have predicted your situation. I think there's more I wanted to say, but I'd have to go back and look and am too tired right now, past my bedtime... hehehe.
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Thanks to all who offered their moral support regarding my side effects from hormone therapy. I saw my MO this week and when she walked in the examination room she started the convo with, “Well, you gave it the good old college try." I was in shock. I hadn't even told her about my second heart ablation, so I am assuming the cardiologist did. I did tell him I was stopping tamoxifen for the time being. They do talk, the docs. But yes she was ready for that conversation. I asked her if I had received any benefit from the three years I had completed, and she said yes I certainly had, but the research on 3-4 years hasn't been done. She did say that a research study on two years of endocrine therapy showed benefit, but was inferior to five years. Sooo…there's that.
I know it's been said before, but I am chiming in: If a medication/therapy has such low compliance and/or completion rates, it's not an effective therapy. Full stop. This is the FIRST TIME I have ever had issues with meds. I typically do just fine on any medicine. I am not super sensitive or prone to many side effects. We need better options! This is unacceptable.
So as it stands I am taking a three month break from hormone therapy and will reassess whether I want/feel like trying yet again at that time. I'm leaning towards no, but who knows. My MO said she had never seen a case like mine. But she says that about everything. It's so hard to trust the MOs when they are so prone to medical gaslighting about side effects. I assume they have their own reasons for not being square with us, but ouch it's hard. Fact is, there are several websites that list heart arrhythmia as a side effect of tamoxifen. I want to ask her how long she's been an oncologist.
I am afraid to continue its tamoxifen as I don't know how many times my heart can be ablated before it decides to start failing. Not something I am willing to experiment with. So for now, Oldladyblue, I will post in your new roll call thread. Onward
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Forgot, someone asked why my MO was insistent on endocrine therapy, and it’s because of my HER2 positive status and I have an ATM genetic mutation
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Oldladyblue, it is 4:44 AM and I am up and wide awake. Why? Because I realize the words I put in all caps in my last post. were for me! I am so conflicted and honestly, I am terrified at the prospect of going back on Letrozole! I have no breasts anymore, but I know that my recent Dx of DCIS with microinvasion and mastectomy, didn't even play a part in my MO wanting me to take the AI. It is all based on my 2019 ILC, as it should be.
I KNOW the AI will increase my cholesterol and cause my joints to ache again. I know that because it did that after I took it for only 6 months in 2019.
I called my tumor "tiny" at my visit with the MO last week, he said it wasn't tiny, it was small. (1.3cm)
Before I had my surgery in 2019, I had full body scans and a dexascan. This time, nothing. Literally nothing, not even normal blood work prior to surgery. My last CBC was in August of 2021, That was my surgeon's call, and I wasn't worried, mostly because I have a spread sheet on my blood work for the past 22 years and it hasn't changed much in all those years, other than the increase in cholesterol when I was on Letrozole, and I was feeling fine.
I don't have an appointment with my breast surgeon again until December. My next appointment with MO is in spring of next year.
My issue is I can't seem to take my own advice of not letting fear of side effects dictate what I should do! I am literally petrified to take the AI again. Not only that, but I have no confidence in the pharmaceutical company, Aurobindo Pharmaceutical Co. in India because it is the same company that sent out a VERY late recall on my blood pressure medication. If I took that lot # that was recalled, it would have been more than 4 months ago. CVS was no help in finding out if I took that or not. A Jan 2023 expiration date tells me millions of people already took the medication and doubtful that many are taking it now. I already likely took their drug that had high levels of a cancer-causing substance, and now they want me to take their AI to prevent a recurrence of a cancer???
I very much want to hear your thoughts Oldladyblue! No hurry, I can't take the AI until my drain is out, which honestly, I have no idea why that matters. I also wonder if the AI will cause more pain with my tissue expansion and next reconstruction surgery?
I still can't wrap my head around the fact that all breast surgeons and medical oncologists push AI's knowing the harm they cause for such a small chance of recurrence. Why aren't they trying to find other means of stopping metastatic cancer from happening than messing with hormones? So great that we have a test to let us know if chemo will be worthwhile, how long must we wait for a test to let us know if AI is appropriate? It seems that with Tailor Dx, if you have even a 1% chance of recurrence, the doctors would push an AI. My Oncotype Dx score was 21, but being older than 50, chemo was not deemed effective. Tailor Dx was 7% chance of recurrence with AI, but only 10% without???? So taking AI is only for 3 additional percent? Worth all the anguish and harm to my body? I am not sure I can take the AI again. My MO said, if I take the AI and get a recurrence, at least I will know I did everything I could to prevent it. True, but being diagnosed a third time never made me regret my choice of stopping the AI, even a little!
My situation is further complicated because when I was diagnosed with ILC, I had no axillary nodes because it was the second Dx in the same breast. In 2003, my doctor removed 24 nodes. I know ILC is particularly sneaky, and it could have spread through the blood vessels. I can't believe I am reliving this agonizing decision over AI again!!!!
So much has changed in the almost 20 years between my first and third diagnosis with breast cancer, but one thing is exactly the same, the push by doctors to take AI's.
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Hi Mavericksmom, I understand being up at 4 AM with your head spinning. Such an experience you are having. I don't understand no blood tests or scans before your surgery, the VA gives me so many each year, but VA doctors are definitely on the bandwagon for "standard" treatment with 5 or 10 years of Hormonal Therapy, no questions asked. My 2nd opinion doc, lead Hemo/Onc couldn't even access my TaylorX score (Oncotype 28) because the VA computers block the word "breast" from being searched on their system. My chemo percentages said I would gain a 3% advantage and I wasn't sure that was enough to suffer through chemo. But I did it, pushed by my doctors.
I would be scared too of taking the AIs, I understand your bad past experiences and pains. I get it for sure. Such havoc those tiny little pills can cause. I was a (bad) different person on those pills.
The problems with finding "new" ways, instead of Tamox/AIs are research money, and lack of choice, I assume. The "regular" doctors in the big corporate treatment structures have no choice in researching treatments for something new, and certainly not for "unproven" treatments. My oncologist and primary care at the VA won't even prescribe vitamin supplements unless called for in blood tests and the automatic "suggestions" generated by the computers. I was shocked to be recently prescribed Vit D and Calcium at the VA as earlier my onco doc told me that all supplement results are "unproven".
I did check into two Alternative centers. Lifeworks Wellness in Clearwater, FL and CHIPSA Hospital in Mexico (office in San Diego) for alternative Hormonal Therapy. Supposedly both places have cured cancer without chemo/rads/AIs. But they are cash only with a 40-50k price tag upfront. One friend I know had a mastectomy then 40K of treatment at Lifeworks and got metastatic breast cancer 11 years later. Another friend I know did AIs for 2.5 years and is this year metastatic.
As you mentioned, your own statistics are outside any kind of predictive model. Sigh. Hugs. I wish this wasn't happening to you.
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old lady blue, Thank You for responding! Just knowing someone understands....REALLY understands, is comforting! We didn’t sign up to be doctors yet we are put in that position when navigating breast cancer.
I slept in my bed last night vs recliner, for the first time since the night before my surgery in mid October. I tried to lay on my side, but my hip hurt too much to do that. If I was taking the AI now, I would swear it was from the meds! As if it wasn’t already hard enough to sort out what effects are from the AI and which are not! It isn’t as easy as it sounds to distinguish what causes pain.
I don’t understand the lack of testing either. I had full body and bone scans prior to my surgery in 2019. This time, nothing! It is as if the last three years since I went off Letrozole, never happened or doesn’t matter
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I just realized I don’t know a basic fact, are AI’s used to prevent recurrences or stop growth of metastatic cells that might be in a person’s body “sleeping?”
I looked it up, but only see articles stating that it is for recurrence. If that is the case, no way will I go back on Letrozole, I don’t even have breasts anymore and the small amount of breast cells left behind are unlikely to become cancerous!
I wish I had thought of this before I saw my MO! Ugh
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Never mind, I found my answer on another website! Still conflicted as to my personal advantage of taking an AI. Only point of conflict is that I had ILC and that was a higher grade and typically spreads to more places than IDC.
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mavericksmom: You are correct taking the ILC into consideration since it is sneakier than IDC. What did your oncotype say about 9 year metastatic recurrence (on the second page of the printout)? My MO recommended AIs for 10 years which according to my oncotype has a 9 year recurrence probability of 12% taking them and a 20% chance (his calculation) skipping them. With all the problems estrogen blockers could cause with my other health issues (osteoporosis, osteoarthritis, thyroid, radiation induced pulmonary fibrosis, family history of stroke) I am taking the extra 8% risk for QOL. My tumor is T2 and very highly estrogen positive so any recurrence is more likely to happen after 10 years; I'll take the AIs if that ever happens. I'm 71 which factors into my choice, but I'm still planning to live past 100 as one of my grandmothers did. Good luck with your decision! It would be easier if the AIs were failsafe but they're not.
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maggie, my oncotype score was 21, with AI @ 9yr, 7% That is on my first page. I don't see anything stating a metastatic recurrence on the second page.
I had no positive nodes because I had 24 nodes removed in 2003 when I had IDC, so none were removed in 2019. I know ILC can go to other areas of the body via blood vessels too.
I hear you about QOL!!! I am 69, so we are close in age. I was 65 when diagnosed with ILC.
My feeling was not to take AI because statistically, it didn't seem likely to happen. I have had breast cancer three times, none were recurrence. I thought I had it all figured out, then my BS and MO pushed the Letrozole. Taking an AI again scares me to death for many reasons, but I don't know how many more times I can deal with breast cancer and "win." This surgery took a toll and I still have a second surgery coming up! Each time I find it harder to bounce back.
I know I can stop Letrozole at any time, so, I am going to take it and try not to think about it, but if it starts to affect my QOL, I will stop it! My cardiologist never took me off of the cholesterol meds after I stopped the Letrozole. It really increased my levels the last time I was on it. With the meds, my cholesterol has been well within normal range. I guess I will find out what going back on Letrozole does to my cholesterol.
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mavericsmom, AI is used to slow down the cancer cells to metastasize, or if lucky, the immune system kills the cancer cells that are left without their hormones to grow. I don't think it has anything to do with having breast tissue or not. In case cancer cells have spread through blood or lymphatic fluid, you don't want them to be fed and feel comfortable to spread. Since my first diagnosis, I have removed all my breast tissue but I still take AI for many years. In case letrozole doesn't work for you, you can replace it with exemestane which works differently and in research, it is anti-inflammatory as well.
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mavericksmom, The 7% at 9 years with AI on the oncotype report is the probability of metastatic recurrence within 9 years while taking AIs. Not taking them raises the risk by about 50% so they are definitely helpful if you can tolerate them. My MO agrees that I have valid reasons for rolling the dice so he is OK with my decision even though it is not what he would recommend. I hope the letrozole works out for you.
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Lilly and Maggie, Thank you sooo much!!!! You both made me feel so much better! I had coffee with my sister this morning on her patio since the weather is unusually warm. She said she thought I should go on it too! She is the only one of my three sisters who hasn’t had a breast cancer Dx.
Again, Thank you! You have no idea how much you helped me!
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mavericksmom, I am glad you find this info helpful. Everyone has their own experiences with letrozole. Many women have no problem with this medication and they have been taking it for a very long time. Honestly, I did have a problem with letrozole. That is why I asked MO to review it after 2years on it. He gave me a 6 weeks break to start the exemestane. I started exemestane at beginning of March and so far, no problems at all other than menopausal which is normal conditional for me with or without the medication. What is up to me to reduce the recurrence risk, I am doing it. What is in God's hands, I can't control it. I consider myself lucky to be in this part of the World to have access to these anti-cancer meds while most women are not as fortunate.
If you don't mind to give you a couple of tips that worked for me during these 2 years. When you take letrozole, don't take it at nightime. Take it with breakfast even though it says you can take it on empty stomach. Also, drink at least a glass full of water with this medication to be easy in the stomach and also to flush it. Starting the day with morning stretches in bed helps with the joints. Let us know how it goes.
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Lilly, thank you once again! Especially for the information on best time of day to take it. I took in at breakfast when I was on it before, so planned to do that again, but the thought of changing to nighttime entered my mind. Now I know to stick with breakfast!
My drain is OUT!!!! Feel like I had a minor victory today! tomorrow would have been 28 days, so I am super happy to feel "free" again, especially when taking a shower!
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oldladyblue, that's great that you went ahead and started the topic. And thanks for pointing me to the Abbreviations. Like you said about shaking your head while reading someone's post, I'm shaking my head while reading everyone's posts about what they're going through. It seems every day I meet someone or hear about someone who has just been diagnosed. It's too much! Too much suffering. It's bad enough that we got cancer, but to also be made to feel miserable by these drugs is over the top ridiculous. The medical community has got to do better! So here's to us, for doing our part to keep the communication within OUR community going and for making an effort to get the kind of answers we need!
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mavericksmo, your drain is out? Congratulations! The most difficult part of the surgery in my case was sleeping with all 4 drains.
Do you trust your MO? Are you happy with her? You can ask for exemestane vs. letrozole. My understanding is that letrozole is the best anti-cancer of the 3 AI however if life becomes miserable because of it, exemestane is a different formula that is gentle to the body. Keep us posted.
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I am new to the breast cancer community, and still adjusting after jumping med to med for the last 3 years. I can tell you that I am extremely susceptible to pain, and side effects. The first med was Anastazole, and could barely walk from the pain, (lasted 1 month), then changed to Exemestane and have lasted 2 years but have had still bone and joint pain (less than Anastrozole). Lately tried to switch to Tamoxifen, but my body decided to swell (extremities) and could not handle it, so returned to Exemestane. I take it daily with monthly shots since I was pre-menopausal. I have 7 more years to go to finish my treatment. So far Exemestane has been the best one out of all 3
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anmyd, I was told by my MO that exemestane is the easiest of 3 AI. I don't know why don't they offer it as the first treatment. Probably, letrozole is more powerful.
nomeds, I agree with you. Cancer meds are very harsh but some of us have to take them. If I was stage I and that has not spread to lymph nodes, I would consider not taking the meds however, many of us are in stages where cancer has spread and we want to reduce the recurrence as much as possible.
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Had not heard of exemestane so glad to learn of it. Have been on AI's since 7/2020 and have a prolapsed urethra (PU), most likely from AI, at age 61. Ugh, urinary urgency and tenderness. Anyone else on HT dealing with PU? Doctors normally treat PU with estrogen but my cancer was 99% ER + so doctors do not prescribe it. Considering reducing my AI dose (maybe everyother day?) or maybe a switch. Was on Arimidex from 7/2020 but had a lot of joint pain so switched to Femara in 9/2021 which has been better for joints. Doing kegels daily but suspect that they are no match for an AI. Anyone else have relief with reduced dose?
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Your post was so interesting! I love how you concluded it as either way it is so hard. When I took Arimidex for 5 years 18 years ago, it was hard…especially the first year. It did get easier…and I do think it helped. Then it was scary to stop it…I felt like I was without anything to prevent! Now I have begun Femara…and I’m back to the worry of side affects. I’ll keep going and see how it goes.
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mavericsmomThank you for the stats. I have a very difficult time understanding my oncotype recurrence score. First it seems that everyone that benefits from chemo show the same >15%. That's just a huge non specific number. My oncotype of 33 showed 21% recurrence with TAM alone in 9 years. With chemo >15% benefit (that would include TAM). I cannot take tamoxifen. After 1 week I had terrible pelvic pressure and pain. And since I have an auto-immune arthritis and osteoporosis, at 68 I do not want to risk the AIs. I have found that I already have a lot more inflammation since the chemo suppressant drugs wore off than i did beforehand. So I am confused what percentage that leaves me with just surgery/rads/chemo alone.
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mavericsmomThank you for the stats. I have a very difficult time understanding my oncotype recurrence score. First it seems that everyone that benefits from chemo show the same >15%. That's just a huge non specific number. My oncotype of 33 showed 21% recurrence with TAM alone in 9 years. With chemo >15% benefit (that would include TAM). I cannot take tamoxifen. After 1 week I had terrible pelvic pressure and pain. And since I have an auto-immune arthritis and osteoporosis, at 68 I do not want to risk the AIs. I have found that I already have a lot more inflammation since the chemo suppressant drugs wore off than i did beforehand. So I am confused what percentage that leaves me with just surgery/rads/chemo alone.
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I just quit taking Anastrazole. It damaged mu quality of life a great deal in the 11 mo I took it. And after all of that suffering, I had a very severe reaction to it--night terror, racing heart rate, and horrible feelings of impending doom it also interacted w my other meds. What a nightmare! Aftrr 2 days off of it I was back!! It feels so good but now I realize just how badly I felt.
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I just quit taking Anastrazole. It damaged mu quality of life a great deal in the 11 mo I took it. And after all of that suffering, I had a very severe reaction to it--night terror, racing heart rate, and horrible feelings of impending doom it also interacted w my other meds. What a nightmare! Aftrr 2 days off of it I was back!! It feels so good but now I realize just how badly I felt.
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jaylebee, i found on exestamane (spelled wrong, maybe) that I had urinary problems. Felt I had to go but took me awhile sitting there. Last urine showed an increase in leukocytes which means the urine is sitting in the bladder too long. Can mean an infection but that was neg. I agree with everyone saying their QOL has gone down with these drugs
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jaylebee, i found on exestamane (spelled wrong, maybe) that I had urinary problems. Felt I had to go but took me awhile sitting there. Last urine showed an increase in leukocytes which means the urine is sitting in the bladder too long. Can mean an infection but that was neg. I agree with everyone saying their QOL has gone down with these drugs
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PS. as of the beginning of Nov I stopped the AI. I'm 65 and can't imagine I have much estrogen left in my body anyway.
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PS. as of the beginning of Nov I stopped the AI. I'm 65 and can't imagine I have much estrogen left in my body anyway.
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