Tamoxifen help

rachelk

Hi everyone,

     After a lumpectomy, chemo and radiation 3 years ago for Stage 1 breast cancer, I also began a 2-year plan for shots of Zolodex (shutting off my hormones) and a 5 year plan for Tamoxifen.  When I started menstruating after finishing the shots a few months ago(wow, were the hot flashes AWFUL for 2 years), I have been suddenly having terrible - and not common?!? - side effects from the Tamoxifen and I wanted to see if anyone has advice??

    My abdomen is very swollen and I can actually feel my ovaries specifically swollen and painful.  I feel like there is constant pressure.  My abdomen feels both heavy like during menstruation but also as if someone took a needle and injected a lot of air into me.  I am very athletic and it is hard to feel my abs and my muscles anymore (although they are very strong!).  I also have terrible exhaustion, leg pain, mood swings and eye problems (not tolerating my contacts well).  After thinking it was about dosage, I had stopped for 1-2 weeks and these all disappeared - so I am convinced it it Tamoxifen.  I am back on it and this is all starting up again . . .   does anyone have these symptoms?  Do they subside?  I have around 2+ years left (!) and I know I should not stop the drug . . .

     These preventative therapies for me are a million times worse than anything around the cancer itself for me and are stealing the quality of my life SO MUCH . . . 

     I appreciate and and all advice!!  THANKS!

asurvr

Hi Rachelk,

I am in my 4th year of taking Tamoxifen.  I have not had the problem of the swollen abdomenial pain but I can definitely identify with the exhausation, leg pain, and eye problems.  I will say they do minimize over time.  I sometimes think the cure is worse than the disease but for me it is a just suck it up and do it kinda thing. 

 Take care,

Barbara

rachelk

Hi Barbara,

   THANKS!!!  I needed to hear that I am not crazy . . . I flew through all the "hard" stuff, but for me, it these preventative treatments are actually the tough ones.  Like you, I am definitely a suck it up and just do it person - not only is that my general philosophy, but I have the good fortune (I mean that seriously) to have basically the same early cancer diagnosis/experience as you and with us, it is really a mental battle more than a physical one . . .  I am hoping I have your experience and that this will lessen a bit over time.    I appreciate your support and I wish you continued good health! 

Thanks,

Rachel

Lolita

I also have a very swollen abdomen after 18 months of tamoxifen. Its gotten so bad, I'm thinking about requesting an ultrasound ahead of schedule. No real pain though. I figure recurrence would be worse.

Renata

I've had the whole lot too: swollen and hard abdomen, like filled with gas, exhaustion especially since summertime began, very heavy legs, eyesight issues...I had a pelvic ultrasound and MRI in May and was told I have two big ovarian cystadenomas. I'm sure these have been caused by the Tamoxifen, so I stopped taking it and will have another ultrasound after my period in September. My sight has definitely improved, but the others issues have remained the same. I've always been very constipated so I guess the swollen abdomen can be partly explained because of this and the cystadenomas of course...I see the Onc next October so I'll ask him...

Just curious, how can you feel your ovaries? Do you feel them when laying or standing?  I'm not athletic at all, but I'm very thin and since I was told I have such big cysts I've tried to feel them but I can't...

I know some people split their dosage of Tamoxifen: 10 mg in the morning and 10 in the evening and that has helped with the side effects, I may try it if I go back to take it...

Best of Luck.

rachelk

Lolita - I go regularly (every 3-4 months) for internal ultrasounds with a gyn why specializes in cancer and fertility and he saw my ovaries were "overstimulated."  I think it is not causing damage with me (yet?), but wow, this is very frustrating . . . I hear you!  I am getting checked for ovarian cancer (BRCA positive) all the time so I stay on top of this. I am VERY lucky to live now in a country with socialized medicine somy checks never costs me anything.  But this swelling is really uncomfortable!

 Renata  - I can simply feel little balls of pain.  I feel them 1.  if I push my abdomen in the right places (even standing up), 2.  doing ab exercises in gym, 3.  during the internal ultrasounds/sex - probably the most unpleasant.      I was advised NOT to split my 20 mg, which was a proposal I made to my oncologist.  I think it is time to ask the gyn . . . 

Thanks for your comments ladies!  I appreciate your time and input!

cmhartley

I can certainly appreciate your symptoms as I had many of these same symptoms and it really took a toll on my quality of life.  After doing some research and finding that it wasn't as effective on ER+/PR- tumors and believing that I had already benefited after 2 1/2 yrs I opted to stop my tamoxifen.  All was going well until I developed pain next to my shoulder blade. And, well, no one can say for sure whether this attributed to this but I was just diagnosed with stage IV (extensive bone mets) and believe me the side effects of the bone mets, the emotional toll, knowing now that I will never be "cured" and the side effects of the Zometa infusions are far, far worse than any of the side effects I ever had on Tamoxifen.  So, please, don't stop taking your meds...learn from my mistakes. 

Hang in there.....