Another update

[Nikkij81]

My husband is finally having treatment for his cll they are putting him on acalabrutinib his spleen is six times the size it should be his red cells are slowly but surely fighting back a little his white cells are still quite high but to finally get to know the full picture is quite a relief

[gardening-girl]

Nikkij81, Thanks for letting us know what treatment your husband will be on. Hopefully it will take care of all of his issues and he will be back to feeling well soon. Please keep in mind that with acalabrutinib treatment, as with other BTK inhibitors, his lymphocyte count is likely to dramatically increase as lymphocytes are released from his spleen and lymph nodes. It means that the treatment is working! It may take a few months for the lymphocyte counts to return to normal levels, so be patient.

[Nikkij81 in reply to gardening-girl]

Thank you I hope it does too it's been quite a journey already but at least he is hopefully getting the right treatment yes there was a mention of a big increase of lymphocytes but like you say they said it would eventually go down and his spleen should go down too we was told he could be on this for some years to come

[MovingForward4423 in reply to Nikkij81]

Sometimes, like mine they also can straight down. Mine dropped from 124 to 12.4 in 18 days.

[Nikkij81 in reply to MovingForward4423]

Wow that is an impressive result

[MovingForward4423 in reply to Nikkij81]

Counts don’t always go up. I was very sensitive to Ibrutinib, although it did almost kill me when I had a SVT. I’m 2 years off treatment now, and being monitored. I’m likely to go on Zanabrutinib when the disease bulk returns.

[Nucleusman]

acalabrutinib works so stick with it

[CoachVera55]

Yes Acalabrutinib was good for the 10.5 weeks I was on it. First thing no one mentioned were them headaches 😫 Mine lasted 13 days & bone pain was bad also. Staying hydrated 1 gal of water daily helped & movement, like walking or on my bike. I heard that caffeine works really good for the headaches but I can’t tolerate caffeine it alone causes palpitations but good choice.

I love Zanubrutinib better for the dose reduction options & I find Zanu more effective. I had an enlarged neck lymph node that disappeared in 3 days & numbers dropped very quickly. Lastly for me I could only tolerate 1/2 dose of Acalabrutinib, 100mg Daily & Zanubrutinib 80mg twice daily.

Started; Hgb 10.8, WBC 81 & Plts 76 5 days on Zanu - Hgb 10, WBC 118 & Plts 108 now 1yr later - Hgb 12.8, WBC 8 & Plts 103 My Platelets were 105 for 10yrs of 13y 8mos of W&W. My Neutophil fluctuates also 🤷🏽‍♀️