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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Penicillen
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The critical information is "My lymphocytes are continuing to drop and currently they are 1.3." This means your treatment is working. Plus "However my platelets are still 35 and neutrophils have dropped to 0.3." This means the venetoclax is impacting your bone marrow. Hence your consultant's advice, per the official Venclexta site, to take a break from venetoclax/Venclexta to enable your platelet and neutrophil counts to improve. It's also possible to boost platelets and neutrophils, or use a reduced dose of venetoclax or a combination to maintain safe blood counts, for the duration of your treatment.
My suggestion is to get an expert review of your case through the CLL Society it is free. I did when I was almost ready to start treatment based on the recommendation of my Oncologist. Here are some other alternatives, you might be a good candidate for either continuous treatment with a BTK inhibitor drug like
acalabrutinib, or time-limited therapy with Venetoclax in combination with obinutuzumab. Furthermore,
we also discussed that time-limited combination therapy with acalabrutinib plus Venetoclax is on the
horizon and may be FDA approved within the next year; it could provide an oral only time-limited therapy option that may be appealing to you.
Aussie Neil offers you information based on a medical background. Even though you give us some specifics about your numbers and changes to genetic markers, it is essential to having your medical team offer treatment advice based on a bigger picture to what your labs reveal.
Even though first appearances to your treatment indicate sound medical advice, from this perspective we can’t know the experience or expertise of your medical team. Seek out information as to how often they have treated people in your specific situation. Noses should not be bent out of shape at this question. Maybe you already have this information. It is important to know because there are many variations and variables to many of the treatments available to your specific needs. Advocate for yourself.
Lastly the responder that suggested the CLL society is correct. I suggest this sight and go to it often. I’ve used the second opinion Drs consultation. Find very current information on treatments, new trails, medical centers, support groups, and much more.
All the best wishes in obtaining the information that will give you confidence and comfort in navigating your battle with CLL.
Thank you all for your replies and advice. I saw my consultant on Wednesday. She had the results of a PNH test taken a month or so ago. This shows I may have developed MDS. I am having a bone marrow biopsy on Monday which will provide more information. It's quite a blow. Although I was worried I had another condition I was of course hoping I was wrong! Anyway nothing to do now but wait for the results and discuss options going forward. She mentioned stem cell transplant might be an option. If anyone has any information/advice I would love to hear it!
I’ll be hoping you get some answers From your BMB. They may not be all positive, however having information to move forward with is much better than uncertainty.
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