Tamoxifen side effects

[Irishgal2]

I am meeting my Oncologist tomorrow to discuss Hormone Therapy.  I am 40 and ER and PR positive so I know I will be put on Tamoxifen.  I was reading up about it last night and one of the side effects that is concerning me in particular is joint pain.  I have arthritis in lumbar 5 and 6 of my spine, arthritis in my knees and also no cartlidge in my knees also.  Also 5 weeks after AC x 4 cycles finished I developed a stiffness in my hips if sitting for a period of time.  Suffice to say that my body feels like an auld crock at the moment and I am really concerned by mobility will be compromised even further with Tamoxifen as apparently 1 in 5 women experience this problem.  If any of your experience the joint pain, how did you handle it and did your Oncologist prescribed any medicine to help with this side effect?

Thanks for your time.
Annette

[Irishgal2]

Hi Beth,

Thanks for your feedback.  Well I did decide to take the Tamoxifen and have the attitude "see how it goes".  I have two young children so wanted to give myself every percentage chance of the breast cancer not reoccurring.  I did discuss the Tamoxifen with my Oncologist before I took it and he said that joint pain is not a common side effect but that if my rumatoid arthritis in my knees and back gets significantly worse, then I can come off it.  He said hormone therapy is not critical for me, but that he could give me Zoladex instead for 2 years if I have to come off Tamoxifen.  It's a wait and see game,  but thankfully so far I have not noticed any difference, still it's early days.

Thanks again for your help and best of luck to you too.

Annette

[BLL]

I didn't think  I had any trouble with Tamoxifen and took it for four years.  During that four years what had been the beginnings of mild sporadic osteoarthritis pain in my knees turned into acute trouble - - over pretty much the exact space of time I spent on Tamoxifen.  

I spent a few weeks in a wheel chair with the arthritis, and most of a summer recovering from  an arthroscopy.   They told me the arithritis was bad enough that I would be a candidate for knee replacement if I were older (I'm 52) (whereas a few years earlier I didn't even notice it).

I quit taking Tamoxifen because of a   DVT scare.   Within a few months after stopping it, my knees got dramatically better, suddenly,  for no known reason.   (I can even climb a hill now! )

I can't say for sure that the Tamoxifen was contributatory, but I suspect it might well have been - suspected it enough to  to look it up on line - lo and behold, it does interact, in poorly understood ways, with artithritis.  My advice too would be to try Tamoxifen, but keep your eyes open for any worsening of the osteoarthritis.  My doctor, an expert in knee surgery for osteoarthritis "had never heard of such a connection" - but I think there is so much new in medicine that every specialist can't keep up with every other speciality (and the drug companies don't exactly finance in depth investigation of unwanted side effects) -

I'm a great believer in patients being thoughtful and proactive - not timid, just proactive.   I would consider the cancer risks the tamoxifen might reduce, with the arthritic possible side effects (if they occur), and try to go for the best risk/benefit ratio.  There are no "magic bullets."  Good luck.

Beth L.

[often]

HI....I was unable to take Tamoxifen because the bone pain...not just joint...was so awful for me.  We tried arthritis drugs and none worked.  After 3 months I chose to not to continue with the T.  That being said...my oncologist had never had any of his patients who had the pain that bad....in fact his onc nurse was not even aware it was a side effect (this was 5 and a half years ago).  The facilitator for my support group has been doing BC groups for ages and has done many groups and talked with many other survivors....she had women who had some pain, but nothing that could not be handled..  I know many women who have taken T..not that many had the bone and joint pain, and those who did said it was tolerable.

I would discuss this aspect with the onc, explain your fears and make sure that you are both on the same page as far as dealing with it ... IF....you get it.  Go into it with an open mind...