Tamoxifen or AI?

Options
kerri72
kerri72 Member Posts: 69

Hi ladies,

I'm hoping you can chime in with your own experiences/opinions about Tamoxifen versus an AI for us HER2+ people.

I was diagnosed at 37 years old and had a salpingo-oophorectomy because I tested BRCA2+. My onc wants to me to do Tamox because he thinks the data on it is stronger, but because my ovaries are gone I do have the option to do an AI.

I asked about the CYP2D6 test to see how well I will metabolize Tamoxifen, but my onc says that test is uselss and he no longer orders it. He does run the Leiden clotting test, and plans to test my estrogen levels before I start anything. Should I insist on having the CYP2D6 before I make my decision? Or has it really been discounted completely?

Obviously I don't want unmetabolized Tamoxifen fueling my cancer, but is that still considered a concern? I have searched the boards for previous threads, but would love opinions on what the latest thinking is, and what your own experiences are. My cancer was high grade, node positive and highly estrogen driven, so I want to make the best decision here. Thanks in advance for any reponses.

 Kerri

Comments

  • Heathersmom
    Heathersmom Member Posts: 46
    edited June 2011

    Hi Kerri,

    I can share with you my story. I was diagnosed in August 2008, after 3 lumpectomies (never got clean margins) I had a mastectomy of my left breast. As you can see by my stats I am triple positive. I had 4 rounds of Taxotere and Cytoxan beginning in Dec 2008  with 1 year of Herceptin. I was started on tamoxifen just after I finished the T&C in March 2009. I tolerated tamoxifen well. In February 2010 after my onc checked and verified that I was menopausal I was put on Femara. During the year I was on tamoxifen I was worried that I wasn't metabolizing it  and was fearful of it fueling any cancer cells that may be lurking. I was more comfortable on the femara in that respect. The femara, for me, was a nightmare that slowly sucked the energy out of me. I had the normal hot flashes (no big deal, I had plenty on tamoxifen and was used to them) my head wasn't right, it felt stuffed all the time, I had a weird kind of dizziness that would hit me everyday whenever it felt like it. The dizziness was more like a whirling sensation that just made me feel off kilter. I had joint pain, not from bones, I thought it was my muscles and tendons...I found out that the pain was more than likely caused by my fascia. My wrists, ankles, shoulders and elbows were affected. All this came on very slowly, however it keep coming on and compounding to where I was so fatiqued from the pain, dizziness and depression that I finally told my onc I wanted off the femara.This was in March 2011. I didn't want to go onto tamoxifen without taking the CYP2D6 test, so my onc ordered it up. My insurance company denied it at first, I appealed their decision and got the approval for the test. THANK GOD the results showed that I am an extensive metabolizer and was able to switch to tamoxifen from the femera. I am 5 weeks out from taking the femara and am finally getting some relief from the pain. The heavy head and  brain fog left after 1 week of stopping femera and my energy level  continues to increase. I have been on the tamoxifen for 1 week now. I know from my previous time on tamoxifen that I won't feel anything like I did on the femara.
    The studies they have done on AI vs tamoxifen show that the AI's are better, however quality of life is importatnt too. I wish I could have continued on the femara only because it is proven to be better. As with all of the treatments for breast cancer, each person handles the various treatments differently, some breeze through, others have nothing but problems.

    I hope that whatever you decide to do  you have a piece of mind that it is the right thing for you to do and I hope that you breeze right through your hormonal therapy whatever drug you decide on.

    I don't know if the CYP2D6 test is that important now as it seemed to be back in late 2008, but I  have a piece of mind knowing that I am not a poor metabolizer of tamoxifen. At least I was able to continue with some type of hormonal therapy that I can LIVE with and I do mean LIVE.

  • kerri72
    kerri72 Member Posts: 69
    edited June 2011

    Heathersmom, thank you so much for sharing your experience! I'm sorry you had such a terrible time on the femara, but I'm so glad tamoxifen is working for you, and that you can rest easy knowing you metabolize it well.

    I haven't seen the studies saying AIs are better than tamoxifen - I'm going to have to do more research on that. My onc keeps telling me tamoxifen is shown to be better. But you're right, it might come down to what I can tolerate. It's interesting you haven't had severe side effects from the tamoxifen, because I've heard that extensive metabolizers do have heavy SEs. Oh well, I guess the moral of the story is that everyone's different. What you said is helpful because it makes me want to push for the CYP2D6 test regardless. Thanks again for sharing and best of luck getting over the pain from the femara and moving on with your life!

    Kerri 

Categories