As this website is a wonderful source of support and knowledge for those with Lymphoma I’m hoping someone will have some useful information/advice for me. I was diagnosed with CLL in February 2022 aged 70. My condition is unmutated with no TP53 variant. I started on Acalabrutinib in September last year. At that time my lymphocyte reading was 287 . In December I contracted covid and had to stop the medication for 2 weeks. When I restarted the acalabrutinib in early January my lymphocyte readings were 88. Platelets readings between Feb 2022 to September 2024 went from 320 down to 35 . In January this year I developed large bruises all over and a blood test showed a further drop in platelets – down to 18. I had a bone marrow biopsy in March this year which showed NOTCH1 – 48% and PTPN11 – 33%. My consultant advised me to come off acalabrutinib and in May this year I spent a week in hospital having become neutrophenic (neutrophils were 0.9). When I stabilised I was put on a new drug regime – Venetoclax and Rituximab – this started in May (I’ve had 4 sessions). My lymphocytes are continuing to drop and currently they are 1.3. However my platelets are still 35 and neutrophils have dropped to 0.3. My consultant has advised me to stop taking venetoclax and I’ll see her next week. My worry is that as both drug regimes have caused a drop in platelets and neutropils is there any treatment that will work? Am I likely to have another more serious condition? My haemogloblin has remained around 110 throughout which is just slightly below the optimum level.
I would appreciate any information/advice.
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