Talzenna?: I see hardly any posts on... - SHARE Metastatic ...

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Talzenna?

Half-Full profile image
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I see hardly any posts on the PARP inhibitor Talzenna. I’m not sure why that is as I would think there would be quite a few post-iBrance members that have the BRCA mutation. If anyone is reading this that has tried Talzenna, or is currently taking it, can you share your experiences?

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Half-Full
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8 Replies
Arisgram profile image
Arisgram

Hi there! I am BRCA2, and like you, I have wondered why I haven't seen anyone post about the use of this drug. I anticipate taking it at some point, but from what I read, it isn't greatly effective. I believe progression-free survival is in the 4 to 6 month range. I would like to hear from anyone who has actually taken it, and what their personal success was.

Thanks for bringing up the subject! Andi

s_yenju profile image
s_yenju

Hi Half-Full,I started to take Talzenna since 02/2021. I had my first scan two months after starting taking and the result came out most of the lumps shrink. It’s been almost another two months and I am going to have another scan by the end of June. I had BRCA 1 mutation. Comparing to my previous treatments, (Ibrance, Xeloda, Halaven and so on), Talzenna works on me and has less side effects. I have more energy and the quality of life is much better. Even I know the average effecting period is about 8 months, I still feel so blessed with this extra time.

One thing I would like to mention is I had genomic testing since 2018 and they found out I had BRCA1 mutation two years later.

Half-Full profile image
Half-Full in reply to s_yenju

Thanks for the replies. My wife has been on Talzenna for 2 months now and her tumor markers dropped from over 300 to 69, so we’re optimistic.

misshope1 profile image
misshope1 in reply to s_yenju

Hi, I am happy to hear about your progress. I will be starting Talzenna in one month. I am HER2 negative with a BRCA2 mutation. I am concerned about hair loss. Did you experience any or any other side effects?Regards, Misshope

s_yenju profile image
s_yenju in reply to misshope1

No hair loss but low hemoglobin will be the most common side effect. Your doctor will check your blood work every cycle and make sure you don’t need to have blood transfusion.

misshope1 profile image
misshope1 in reply to s_yenju

Thank you for your reply. I'll keep a watch on the hemoglobin.

Half-Full profile image
Half-Full

Some minor thinning of hair which seemed to stop after ~4 months. Hair is now subjectively about the same as pre-Talzenna. Watch the hemoglobin blood counts but don’t dismiss other causes of anemia. Our onco assumed my wife’s anemia was due to the Talzenna and it was associated with other issues. The Talzenna may have contributed to the drop in Hg levels but once the other issues resolved her Hg returned to normal. We’ve found that our practitioners are quick to make assumptions about what’s going on and dismiss anything but the most obvious singular cause. That’s been rarely the case for us. I hope the Talzenna works well for you!

misshope1 profile image
misshope1

Thank you for your feedback and support! Your information will help me anticipate issues as I go forward with this treatment.

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