Update: No FCR, we will start Ibrutinib - CLL Support

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Update: No FCR, we will start Ibrutinib

paula_UAE
paula_UAE

Just got back from the CLL specialist to who we went for the second opinion.

Background: 146k WBC, bone marrow showed 14p only, swollen lymph nodes and enlarged spleen, 68 years old.

The doctor suggested FCR will be most efficient but due to the age we will try Ibrutinib (which is a relief since I did not want to go for chemo)

The doctor said we still have several months...so we will be doing the blood work on monthly basis and start somewhere after New Year I guess. I am a bit relieved.

The bad news, there was a clinical trial, mom did not qualified for, so now I need to work double to deepen my pockets enough for unlimited supply of Ibrutinib...

Regards,

Paula

7 Replies
Jm954
Jm954Administrator

Your Mom’s count has doubled in 3 months and initially will increase further when she starts Ibrutinib. I’m glad you’ve got a decision and one you’re comfortable with for your Mom. You’re a very caring daughter Paula.

I've been on ibrutinib 6 months now. Watch for her numbers to spike at first, then drop rapidly. Mine are back in the normal range, so it was considered successful. But also watch out for afib. I just got out of 4 days in hospital with a heart rate of 170. Now it's 40 and I'm dragging. They can't use conventional blood thinners with ibrutinib so afib is a real problem if you get it.

bhayes84
bhayes84 in reply to TimHB

FYI, some patients on Ibrutinib with Afib are switching to Acalabrutinib which seems to have fewer side effects. If you're in the U.S. it was recently added to Medicare Part D.

Yes due to her age, FCR not recommended 65 and over. I made the cut by a year. After 3 cycles I am done...in remission. If she doesn't tolerate ibrutinib, she can move on to acalabrutinib, which has been reported to be "Kinder". Most do great on Ibrutinib. Reminders to stop before dental work and any surgery/procedures. At least she can wait till January. Tell her to enjoy and relax. She has a plan and will do great! 💕

Stay aware. Another trial may one up by the time your mother needs treatment?

I’m 67 and did FCR and in remission doing great after 4 treatment rounds put me in remission. All is well

Are you in the US?

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