Taken off Tamoxifen

BBK
BBK Member Posts: 53
edited March 2014 in Breast Cancer #1
Hi, I'm a Stage 1 bc survivor (dx on Nov. 22, mastectomy surgery in january, immediate tram flap reconstruction, 4 rounds of AC chemo until early may, hair starting -- slowly to return, started tamoxifen on july 2, had SEVERE joint pain...) who was yesterday told to STOP taking the Tamoxifen, and had an appointment rescheduled with my oncologist to "re-evaluate". My appt. was to have been the end of September...now, it's mid-September. By then, I will have been a month OFF the tamoxifen. Dr. warned that my periods might come back (perhaps with a vengeance...).

Anyway... Are there any others out there in similar circumstances? What happened in your case? What are you doing now? Did the joint pain go away? Did the hot flashes go away? Did your periods come back?

Any assistance on what to expect would be nice. Once again, I'm just fearful that without the tamoxifen in my system...the cancer will come back. It's 6 of one, half dozen of the other -- I'd rather suffer the joint pain than have cancer return...I think.

So, curious as to what doctors have done for others in my same circumstances. Thanks! Barb

Comments

  • kamehameha6470
    kamehameha6470 Member Posts: 33
    Hi BBK:

    I had many reactions to the tamoxifen. It took most of last year to figure out that I can only tolerate 10 mg., half of the dose the doctor wanted in the first place. I still have some side effects, such as some minor trouble with my hands, but they are tolerable now. I was taken off the drug for 1 month to get my symptoms under control, but I'm back on now and will be on this dosage for 4 more years. I still have hot flashes and periods, and some testiness, but it has been a good compromise for both me and the doc. Hope that was helpful to you. Good luck.