tamoxifen side effects?
 

Hi
I decided after a month of uncertainty to add tamoxifen to my herceptin/perjeta. For those of you who are taking tamoxifen, I'm looking for input for potential side effects so I am prepared. Thank you in advance.
Patrice
Hello,
I have been on Herceptin/ Perjeta (only) for 3 months. I was wondering if anyone else has only been on these antibodies dx with stage IV, and what the results were. Or, how long did it last. I am not happy with waiting for things to progress before adding something. I feel like I should be doing more.
Dx Stage IV Her +, April 2015 with collapsed lung-mets to lung, liver, questionable bone, and some nodes
Chest tube placed to relieve 5 liters of fluid in right lung
1 round of cyclophosphamide/doxorubicin until tumor biopsy confirmed Her2+
May 2015-began taxol/herceptin/perjeta
chest tube removed
3 lung taps to remove continued fluid problem and shortness of breath
September 2015- plural tube placed in lung
Continued with taxol/herceptin/perjeta
Scans slowly improved
December 2015-discontinue Taxol due to increased neuropathy in feet and hands
February 2016-plorax drain removed, fluid issue resolved. Bottom of right lung remains collapsed, but feels ok.
Continuing on herceptin/perjeta
(lost 5 year old daughter to neuroblastoma in 2011 after a 2.5 year battle)

Re: tamoxifen side effects?
 

I just finished my 5 years on tamoxifen, I didn't have any side effects. I know some have complained of joint pain.

Re: tamoxifen side effects?
 

Hi Patrice,
I have been stable on Herceptin and tamoxifen for a long time now. The Tamoxifen doesn't worry me too much - if you discount the fact that I am having the world's longest menopause! Hot flushes and disturbed sleep, but otherwise OK.
Best wishes.... Pam

Re: tamoxifen side effects?
 

Hi Patrice,
I was on Tamoxifen for just 3.5 years. The last year was harsh. I developed uterine polyps and then they would in turn create uncontrollable hemorrhaging which resulted in 4 emergency surgeries to stop the bleeding in a year. And then I developed a blood clot in my leg. All were associated with Tamoxifen. Turns out I developed ALL the side effects expected with Tamoxifen in addition to the most rare side effects. I also developed vaginal atrophy which is so rare as a side effect I think they don't even document how many women develop it. All and all I hated being on Tamoxifen but it's an incredible drug and tolerated by the majority of women. Just take note of side effects and decide if you can live with them. Most likely you won't notice a thing. :)

Re: tamoxifen side effects?
 

i was on tamoxifen for 6 yrs and had extreme hot flashes and joint pain. i am happy to report for those looking forward to the end of tamoxifen that, in my case, the joint pain lifted as if a miracle. i can squat and get up now, do exercises like squats and lunges, you name it, and i feel like i'm 40 again (i'm 56). the hot flashes have receded in a major way, too. good luck with tamoxifen and i hope you have few to no SEs. v