Help-Tamoxifen-Stop Taking it After 3 Years

Hi bluesky,

I can completely empathize with your situation.  I have only been on tamoxifen for five weeks now and feel so terrible on it.  I am also 2/3 of the way with my rads, so I was hoping upon hope that my general malaise was due mostly to the radiation.  But based on what I have been reading on this site, many, many gals are suffering like us too.  I am 48, single, with three older children, and on summer break, thank goodness. 

I, too, am feeling off balance, bloated, nauseous, aches in my joints, edgy, etc.  The thought of taking this drug for five years is depressing, but I know it is the best course to take, that I owe it to myself and to my children to do whatever it takes.  I am going to try acupuncture next, as that is supposed to help.  We shall see.

I feel like my "soul" has been sucked out of me, and I am just a hollow shell of who I used to be.

Just wanted to share that I feel the same way, so you are not alone, must be some consolation in that,no?

We have similar diagnosis, and I too had never taken medication prior to BC. I too believe in the benefits of natural healing, and although I never considered not doing chemo, rads, surgery, etc. I do wonder how much of the truth is being told to us. I hate having the annoying arm numbness, the results of having my lymphnodes removed, but feel grateful that the matted cancerous nodes are no longer under my arm. I also hate having neuropathy in my feet, but I am grateful for the fact that I live in a country where I was able to get the lastest and best chemo treatments, with the hopes of living to see my grandchildren. I really am grateful for everything that is, and has been done for me. It is a blessing to live in this country with the access to medical care that we have. I do however do not doubt for a minute that the big business of pharmaceutical drugs can influence how we are being treated, or not. My daughter has a rare immune deficiency and would not be alive if it were not for the IVIG treatment she receives, which are relatively new and at great costs. I thank the pharmacy that delivers her the life saving antibodies, and the pharmaceutical companies that developed them. So I am really hesitant to point fingers or make assumptions about our medical community.........However I took tamoxifen for almost one year. I was a total basket case on that stuff and had severe leg cramps like charlie horses that I had never had in my life. I actually became delusional at which point they gave me more pills and more pills, it got worse and worse. I became very mentally ill. Finally one day I couldn't take it anymore and realized that it had to be the tamoxifen. I stopped all the meds, including the tomoxifen. Within days I was feeling better, in a few weeks I was starting to feel normal again. After two months I was completely normal again. I kept asking if it could be the tamoxifen and they said no, yet after I got my mind back I started reading and researching everything I could find on tamoxifen. I am not the only woman who became mentally ill and delusional taking it. I can not believe what an emotional roller coaster I was on. It was only after I stopped taking it that then the doctors were like, "oh yeah, that can happen" turns out severe leg cramps were also a side effect of tamoxifen. I am not sure if my doctors just did not know, or if they feel too much liability telling me so? I got more informatin from the posts of other women who struggled with the effects of tamoxifen, who also were told there was no connection to the tamoxifen by thier doctors. Beleive me I trust other woman who actually have taken it, before a doctor who has not. The doctors acted like I was the one that was crazy. And yes I was while taking that stuff. I have had no problems what so ever since stopping it. Anyway what shocked me the most in my research is the astronomical amount of money that tamoxifen represents to the drug business, and how the tamoxifen people, despite not knowing the effects on women long term were pushing very hard to get FDA approval for this drug to be used as a preventative against BC. I am grateful to have the option of tamoxifen since I had BC, and I am happy for those who can take it and the lives it could be saving, but I was shocked to see that they were trying to push it on healthy women. Something just did not sit right with me on that one............  

I stopped after just over 2 years.  First I was on Arimidex and was switched to Tamoxifen.  The Tamoxifen gave me pancreatitis, so it was a no brainer to stop.  I was relieved to be able to stop, but at the same time, it was as difficult to stop as it was to start. I did have the support of my onc.  It's only been a year and 5 months since I stopped, so probably too early to know about recurrence.  Also, my grade is not as high as yours bluesky.  If you are bound and determined to stop, I would definately talk to your onc.  No one can force you to do anything you don't want to do.  If I were to have a recurrence, I'm not sure that I would necessarily think it was because I didn't go the full course of medication, but, its a choice we all have to make for ourselves.  I guess that you need to determine if you can live with the choice.  I'm ok with mine.  Good-luck!!

Edited to add:  Sorry ladies, I didn't realize I was on a stage lll thread.  That's what happens when I don't mind my ouw business