Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Has anyone quit or reduced dosage of the hormonal therapy?

Options
1252627282931»

Comments

  • WifeWBC
    WifeWBC Member Posts: 8
    Options

    My DX was 2013. Was on tamoxifen for 8 years. In July my onco said I can stop taking the pills. During the 8 years my worst symptoms would have been hot flashes, leg cramping always at night (sometimes severe), some weight gain (10lbs), sporadic bleeding. These were all reasonably manageable. Leg cramps were the most irritating, but hardly life ending.

    Since stopping, my periods have returned. I was told by onco and gyno that I’d likely gone thru menopause in the past 8 years ……. Well, hello. All it’s done is reinforce my opinion the experts often know less than they let on about each individual case they manage. A lot of guess work still happening. They had real difficulty pin pointing and defining my cancer pathology. As such, and because of me age at the time (40), they just blasted me with everything they had, and stuck me in Tamoxifen. Amen!!!

    Here I am, 9 years later in full bloom. My onco will probably act like it’s normal, and not unexpected. They don’t know!!! Sad but my experience

  • WifeWBC
    WifeWBC Member Posts: 8
    Options

    My DX was 2013. Was on tamoxifen for 8 years. In July my onco said I can stop taking the pills. During the 8 years my worst symptoms would have been hot flashes, leg cramping always at night (sometimes severe), some weight gain (10lbs), sporadic bleeding. These were all reasonably manageable. Leg cramps were the most irritating, but hardly life ending.

    Since stopping, my periods have returned. I was told by onco and gyno that I’d likely gone thru menopause in the past 8 years ……. Well, hello. All it’s done is reinforce my opinion the experts often know less than they let on about each individual case they manage. A lot of guess work still happening. They had real difficulty pin pointing and defining my cancer pathology. As such, and because of me age at the time (40), they just blasted me with everything they had, and stuck me in Tamoxifen. Amen!!!

    Here I am, 9 years later in full bloom. My onco will probably act like it’s normal, and not unexpected. They don’t know!!! Sad but my experience

  • alittleknowledgeisdangerous
    Options

    I checked in on this website again after a few years, saw this thread and had to add my experience. A few years ago, I stopped taking aromasin for LCIS. I was on it for a little over a year with no abatement of aches and pains, decided it wasn't worth it. Two years after quitting, a tiny DCIS apeared on US—not mammogram. It was caught early, no need for anything more than lumpectomy and another try at AIs. I have now been on letrozole for three painful, tired years. It hurts to wake up every morning. My eyes are dry and burn and I panic if I realize I have left the house without eye drops. But every time I consider going off the drug Iremind myself that if I get another recurrence, I will probably have to do chemo, radiation and start the AIs yet again. So I count the months until I am free. Tips you have probably already heard…Acupuncture has eliminated hot flashes. It helps with energy but hasn't done much for pain. I do 20 minutes of gentle yoga and and low-intensity walking most days and my body notices if I don't. .

  • RoRo123
    RoRo123 Member Posts: 9
    Options

    I've decided to stop all AIs. I started on Tamoxifen for 3 months, then Aromasin for a couple months (dizziness) and finally Letrozole for the past 7 months. My hair has thinned out so much, that I now have bald patches in the back of my head. My DCIS onco score is 0 (zero) with recurrence of only 1-2% with radiation. My doctor okayed it, but now I'm awaiting my hair to grow back. I'm off to my PCP today because I'm on thyroid medication and since on Letrozole, my thyroid med has been increased. I want her to monitor my hormone levels.

    I had DCIS, Stage 0. No nodes. Initially the doctor said I didn't have to take them, but I thought it was a good precautionary measure to do so. I'll keep you posted. Anyone else going through this? Thank you.

  • oldladyblue
    oldladyblue Member Posts: 302
    Options

    Hi Roro123. I quit Anastrozole a few months after I started taking it due to its many bad effects on me. My doctors still urge me to try another, (at my one year follow ups recently) but I haven't. Generally I don't like to take ANY medication, let alone something preventative that made me feel miserable.

  • [Deleted User]
    Options

    I have tried all 3. I guess Letrozole was the one with the least SE. Currently (stopped 11/25) I am not taking anything and am feeling better. I noticed recently that I have started dreaming again while sleeping...Idt I noticed in the last 2 years that I wasn't. I wonder has anyone else noticed this SE? Seeing onco in Feb.. New person that I haven't seen before so I wonder what he will say. Recently heard a podcast on NPR on how dr's downplay women's symptoms and or complaints. I felt I could relate to that. Oldladyblue, I am another that doesn't generally take meds. I am on thyroid med(I swear it was caused by radiation( but dr poo pood that idea )but otherwise I try to take calcium and vit D once a day. They are hard to swallow so I generally only get to it 4 days a week. As everyone knows its a crapshoot.

  • oldladyblue
    oldladyblue Member Posts: 302
    Options

    Oh how funny about the dreams, I thought it was just me... I've started dreaming again in the last few months, but I don't think it was medicine related as I quit the meds awhile ago. Yeah, the docs don't understand at all my deciding to not take meds. At the VA I have all my docs in one place. My new thyroid doc is the only one who took me off of meds, when she replaced my old endocrine doc, she took me off as I was on the lowest dose anyway. He had me on them for years. She said it was unneeded.

  • RoRo123
    RoRo123 Member Posts: 9
    Options

    After 7 months on Letrozole, I lost 50% of my hair. I'm no longer taking any AIs. I've tried three of them. My DCIS onco score is 0 (zero). I'm done. Now to wait for my hair to grow back in.

  • oldladyblue
    oldladyblue Member Posts: 302
    Options

    Oh no roro123, 50% of your hair lost from the AI? My hair is just now finally long enough and full enough after chemo to style to cover the thin spots I had prior to cancer. I can't imagine how you feel losing so much more. Maybe the Anastrozole I took for those months made my thinness worse too and I just didn't add 2 and 2 together.

  • threetree
    threetree Member Posts: 1,426
    Options

    My hair has thinned considerably on Letrozole. It's really hard to have it growing back and looking so much better after chemo all the while it starts thinning from the AI. We can't win.

  • princessbuttercup
    princessbuttercup Member Posts: 159
    Options

    I did a deep dive last night on google, looking for information on any studies about reduced or intermittent dosing of AI's. Of course I don't understand most of it, but it does help me to see that these things are being looked at. I don't want to stop AI's, and if there's a way to continue effectively at a reduced dose, I would do that. This was from May 2020.
    https://link.springer.com/article/10.1007/s00432-0...

    image

    image

  • flashlight
    flashlight Member Posts: 311
    Options

    When I first tried 20mg of Tamoxifen I had terrible bone pain so I decided just to take 10mg for a few weeks. After I tried taking the 20mg and it had the same effect bone pain so I decided to divide my dose. 10mg in the AM and 10mg in the PM and that has been working for me.

  • jinnynh
    jinnynh Member Posts: 26
    Options

    Hi daughterofbarb: I'm afraid I agree with you. Most doctors seem to think anything goes as long as we prevent a new cancer. But at what price? What is "tolerable"? Why should horrible side effects have to be tolerated? Why aren't they investigating treatments with NO side effects? Why don't they experiment with natural treatments (of course...there's no money to be had!)? After 1 year of Arimidex, I had carpal tunnel & trigger finger. I got both operated on in November and am now almost back to normal. No more Arimidex for me. My oncologist agreed, in my case (low risk), it wasn't worth it. I get a check-up twice a year on the Spanish social health system (one mammogram/year, one physical examen); let us hope there will be no recurrence. But I can't get a hand operation every so often! I sometimes wonder if the lack of empathy has to do with the researchers' gender bias. Would they expect male patients to "tolerate" intolerable side effects? It's like their attitude to menopause ("womens' stuff"- "They just have to go through it." Period). Of course, not all doctors or researchers are like that, but it seems that these meds have been on the market for ages, and nothing changes.

  • [Deleted User]
    Options

    Princessbuttercup, After reading the article you cited i came away with the thought that we are being over treated. I stopped AI's in November (dr wasn't thrilled but did say I was low risk). I feel almost human again. I gave the medications 2 1/2 years.

  • JenCanDoThis
    JenCanDoThis Member Posts: 25
    Options

    These are so interesting to read. I am on 10mg of T now after 1 year of 20 mg and now 6 month of 10mg. My mental health has improved but now I am having pretty major joint and muscle issues like my jaw popped while eating a chicken finger.......and I pulled my pectoral muscle opening a box. Exciting stuff. I'm 48 almost 49 and feel 69? or 79 nowadays. It seems to be getting worse. It is hard for me to decide to stop the one thing that can help me but I'm pretty miserable. My doctor asked me to try to stay on for 3 years but will understand if I stop. I see him next week. Super frustrating. Why haven't we found a replacement for estrogen after all these years?

  • ileepak1
    ileepak1 Member Posts: 4
    edited March 2023
    Options

    hello all … I had a left breast lumpectomy in 2019 … went off the tamoxifen after 5 to 6 months … my oncologist said I was one of the lucky ones who had every side effect to the max … I just had a recurrence in my right breast last month … I'm sick over having to go back on thevtabut I'm afraid … three strikes your out … that's what keeps going through my mind …

  • bmj
    bmj Member Posts: 2
    Options

    I am new to this group. I just read your comment and I think I've had the same problem. I started out on Anastrozole but had terrible insomnia, joint pain and arthritis so I went on Letrozole after 2 years. Well, although I was walking 6-9 miles a day for a month just as I started Letrozole, my weight went up and my cholesterol went sky high. Grrrrrr….. I am not overweight by much so this was crazy!! I went back on Anastrozole. I didn't want to take any chance of having a stroke on Tamoxifen. I know it is a very low chance, but as I am the ONLY one in my family to ever have any type of cancer, I figure I'd be the one having a stroke. So I am back to suffering with hair loss, arthritis, insomnia, and fatigue and also mild headaches that last for days. I have one year to go before I reach the 5 yr milestone. I am wondering if I should stop the HT at that point. Is it worth all the side effects to MAYBE keep cancer from coming back???? I'm being advised to continue until 7 yrs. My sister has a friend who had same cancer as me and she stopped the HT on her own and then went back on for a smaller dose. I just don't know what to do. Have you made any decisions after your comment?

  • moderators
    moderators Posts: 8,184
    Options

    Hi bmj, and welcome to our community. We are so sorry for all you are going through with the Anastrozole! It's a really difficult, and individual decision. You are not alone with this quandary. However, if you haven't already, it's definitely worth a discussion with your doctor about dose-reduction. There is also a third Aromatase inhibitor (Aromasin (chemical name: exemestane) that you could discuss at your appointment. https://www.breastcancer.org/treatment/hormonal-therapy/aromatase-inhibitors . We're hoping that others chime in. You may also want to ask if you are a candidate for a Selective estrogen receptor downregulators (SERDs). Read here about the types of hormonal therapy for breast cancer.

    We hope you can find a solution soon, and get more daily comfort.

  • hippmark
    hippmark Member Posts: 92
    Options

    I am going to post here because it mentions reduced dose, but it seems a lot of people interested in this topic are now posting on the "roll call" thread.

    I have not posted in a while. I think I was waiting on something new to post about since I have been out of active treatment for a year now. Please bear with me on what might be a longer thread due to that!

    The good news is that yesterday I went for my every 6 months mammogram and ultrasound as it was stable. I started on Arimidex on July 1 of 2022. Was very nervous to start but hoped I would be one of the one's with little to no side effects. I only started on it every other day and I still take it every other day. I was hoping that would minimize any side effects. And that was the case up until 2 weeks ago.

    I had tolerable aches and some joint pain that moved around in my fingers of left hand. But 2 weeks ago, I developed (seemingly overnight) very bad thumb pain and trigger finger on the thumb and one other finger. It has not gone away. At the same time, I also developed what I thought was a pulled groin muscle but it is not going away and think it could be the drug as well.

    I've made an appontment with my Rheumatologist to get an injection in my thumb. I have of course now come to realize that I won't be one of the lucky one's with little side effects although I guess I "enjoyed" 10 1/2 months relatively pain free. This realization has made me pretty depressed. As we all know, it is hard enough to get through treatment without all this bonus pain and looking at it for years to come.

    Wish I could reduce dose more or even quit. But, I am 2B with one macromet lymph node. According to Predict, this pill takes me from a 17% chance to and 12% chance (5% difference) of return/metastisis. So your mind plays tricks with you weighing the odds. Plus, I am one of those already 7 to 10 year candidates of taking the drug. I might try to switch to Aromisin…you know the drill. Other than the joint pain and some fatigue, I don't have other bad effects.

    I am already a near Vegan and take many supplements and exercise as much as I can. I thought I was so healthy (do have a slight case of Lupus). I have come to the conclusion that my cancer was fueled by having a high estrogen level to begin with, drinking one drink of alcohol every day, plus am enormous amount of stress over the past 10 years. I feel it raised my estrogen level over the brink. Now I don't drink and have reduced my stress somewhat. So I feel I have elminated most of the things that probably caused the cancer in the first place. But since I have had it, the horse has already left the barn and could still be lurking in other cells undetectable.

    I have read many books in the past year. The one that made the most sense to me was Life over Cancer by Dr. Keith Block. I am considering a consulation with him. However, even with everything he talks about in his book, the only mention of AI's is that "Breast Cancer patients will be taking a pill." Of all the studies and decades of experience, this is all he mentions. I guess because not much can help with lowering the Estrogen in your body this much.

    I realize this is way more information than anyone wanted regarding reducing dose and I apologize for running on. But I did want to post my experience with reducing dose so others can read if intersted.

  • lillyishere
    lillyishere Member Posts: 773
    Options

    Thank you for your post hippark. I am not sure why MO tell us that SE of AI are in the first months until the body adjusts while most of us have a different experience. In my case as well, this medication starts building up and SE get worst until comes the time to take a break and change to a new AI.

  • hippmark
    hippmark Member Posts: 92
    Options

    lilyishere, thank you for your response. I hadn't looked at it from the standpoint of it building up in the body, even at every other day. Perhaps if taking it every day, I would have had a sooner reaction to more side effects. Who knows? I am trying to promise myself another 6 months on this one to see if with these shots, I can still hang in there on this one. Day by day is a long time for 7 to 10 years. Kind of feel like you are wishing time would pass quickly to get off of this. Look how much of your life goes by looking at it in that manner however.

  • dmg77
    dmg77 Member Posts: 7
    Options

    Good morning all, I’m on HT therapy for 2 years and 6 month. Yes , half way through.

    Started with Tamoxifen- horrible side effects, changed to Toremifene (Fareston) with more tolerance.

    Put on weight ,hot flashes and so on. Went for 6 month check up and after discussing my side effects

    With my oncologist we decided I can take a break for a month .
    I feel so much better. Gone the fatigue, joints pain, less hot flashes , irregular heart beats,

    My brain is clearer. So… does it worth it to stop taking them ? I wish I knew the answer.
    We suppose to talk at the end of the month. Will keep you posted.