I was like you. I didn't stop tamoxifen because I became Stage IV a few months after I began it - the doctor just said it wasn't 'working and to go off it. But I have to say that my side effects from tamox were immediate and I was not very good about taking it due to that. The QOL issues are very real.
Unfortunately, although I've been off tamoxofen since May, the side effects haven't gone away. I am in serious musculoskeltal pain constantly - I have to take oxycontin to manage it, and it doesn't work that well. I can't get out of bed easily and it feels like my knees won't hold me.
So, don't assume that going off the meds will return you to normal - if you did chemo and your ovaries were killed, as mine were, you aren't going to get estrogen anyway. And, my doctor says some bodies are much more estrogen dependent than others and however you become estrogen deprived, you are going to suffer.
However, it does seem to wax and wane. I only had mild pain for a while and now it seems to be deep, terrible pain again. I'm hoping that it will ease up. I don't know if I'm still having some natural hormonal fluctuations with what is left or what. I lost ten pounds and I was super skinny before so maybe that cause the estrogen in whatever fat I had to disappear.
Now I'm in the realm of guessing but I feel your pain. All if I have to say is being Stage IV is no picnic and if I had to live with this pain for five years to prevent it, I would.
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http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
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