Tuesday, February 28, 2012

Tamoxifen and Bone Pains

On November 8, 2011, I was declared NED or No Evidence of Disease by my oncologist.  Commonly, we know it as in remission.  After my blood test results showing no increase in my tumor markers CEA (Carcinoembryonic Antigen), CA125  (screening for ovarian cancer) and CA 27.29 , antigen found in breast cancer patients.

My oncologist told me though that to be declared in remission, I have to be NED for 5 years and to be cancer-free, I have to be NED for 10 years.

Three months have passed again and my blood test recently on January 27 showed that my CA 125 and CA27.29 are within normal limits still but my CEA is elevated at 5.1  (Normal limit is 3.0)  My PET scan, brain MRI, lung and liver scans show that there is no metastasis or spreading of cancer.

However I have been experiencing severe bone pains, tiredness and coughing for more than 1 month.  My oncologist is still trying to investigate where it is coming from.  I asked if it could be from tamoxifen, the hormone therapy drug that I started taking in November to shield me from cancer recurrence.

We are trying to find out the cause. I will be off tamoxifen for two weeks and will come back to see Dr. Audeh of Cedar Sinai to report the difference in how I feel.

I have not been taking Tamoxifen for one week now and I have not been feeling the bone pains and the coughing has gone away. There is still a little tiredness but better compared to when I was taking the medication.

Could it be tamoxifen that makes me feel tired, the bone pains and difficulty in breathing?  These are listed among the drug's side effects from what I read but the statistics are low. On the other hand, I have non-stop headaches.  No pain reliever has helped so far.

Now, I am just relishing being bone pain free. I should be thankful that there is a drug that can help me reduce the possibility of recurrence.  But I wish there were less side effects on me.

If you are taking or have taken or know of someone who has taken tamoxifen, what side effects have you or they felt?  What recommendations were given by your/their oncologist to ease the side effects?

The journey continues... to take tamoxifen and live with the side effects that come with it or take the risk and be pain free?


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1 comment:

  1. I am also 34 years old. I was diagnosed with stage 3 b.c. at 33. I also had 3 positive nodes. I completed all treatment in January and having been taking Tamoxifen since then. I am miserable. I feel like I have arthritis all over the bottom half of my body. It is especially bad when I wake up or sit for long periods. Walking seems to help. My onc. insists that it is not from the Tamoxifen, but I did not feel this way before I started taking it. My understanding is that there really isn't another option since I am still considered premenopausal. Has your oncologist mentioned any other possibilities for treatment? Good luck to you and keep me posted on your journey!

    -Tiffany

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