So my haematologist has been able to get me access to Acalabrutinib. I’m excited about this. But also a little uncertain. I’d like some wider advice from you all. Particularly if you are having this treatment yourself.
I am 13q deleted.
Gone from 87kg to 74kg. WBC from 77000 to 198000. Of which all most all lymphocytes. Haem from 142 to 106. Platelets fairly stable throughout two years of W+W at 240.
I’m only 38. I feel tiered. Swollen lymph nodes on neck, armpits and groin. Only the neck ones bother me.
I’m thinking i should go for it. But I have reservations about side effects over time and how new this drug is. There does not seem to be any long term data.
All thoughts welcome.