Recently started Acalabrutinib

[Healthgiddy]

Hi everyone,

My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR.

I am worried regarding the aggressive nature of the disease. His bone marrow showed more than 90% infiltration with lymphocytes and extensive lymph node involvement with largerst measuring 20cm. His Hb is 7 with platelets below 10. He has had a packed cell transfusion and two platelet transfusions, whilst awaiting a PET scan for confirmation that the disease has not changed (richters). All this developed within a span of 2 months which the doctors did not expect and hence the current drop in Hb and platelets. He is negative for 17p del. He has now started acalabrutinib 5 days ago.

The doctors have said it may take anywhere from 6-8 weeks for the drug to show results given the current state of the bone marrow and lymph nodes. I am really worried that things will get even worse before they get better (needing supportive treatment for 2 months?) as I have read patient experiences and articles on BTK inhibitors. Has anyone else had a similar aggressive experience and when did things start to get better?

[lankisterguy Volunteer]

Hi Healthgiddy,

I am not medically trained or experienced, but from reading our member postings, IMO it is extremely difficult to provide a specific answer to your overall question. Each of us seem to have different experiences with starting BTK drugs, our side effects and beneficial effects vary dramatically from patient to patient, regardless of our genetics or CLL profiles.

A 90% marrow involvement sounds scary, but is not uncommon, some have reported near or at 100% as they started treatment. Having the red blood results drop suddenly is also fairly common. It sounds like his medical team are responding to his changes in a normal way, after perhaps waiting a bit too long to start treatment.

How quickly his marrow will respond so the supportive treatment will no longer be needed is also difficult to predict. I hope he recovers faster than the average.

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Len

[Healthgiddy in reply to lankisterguy]

Thank you for your reply.

The biggest concern at this point would be that he doesn’t have to stop the drug for any reason.

hoping that the disease responds well to it.