Many of you have heard my saga with husband's CLL journey. Was able to stop treatment in November when blood work and bone marrow biopsy confirmed he had reached undetected minimal residual disease. He had become very neutropenic during the final weeks of receiving Venclexa which led first to dose reduction and GSF injections to finally stopping all treatment in early November. Today his neutrophils dropped from 2.5 2 weeks ago to .26 today. Is it still the latent effects of the Venclexta? Also he had the Evusheld MAB on Saturday, could this be a factor? I have done lots of research but find nothing that indicates Evusheld has that side effect. Had GSF today and again tomorrow - what are your thoughts or personal history? Thanks so much.
Severe Neutropenia 2 months after reaching UMRD? - CLL Support
Severe Neutropenia 2 months after reaching UMRD?
In your profile, you mention your husband's "Last treatment 4 months of Gazyva with Venclexta off and on for 6 months." When was his last Gazyva treatment?
Unfortunately there's a risk of what's termed Late Onset Neutropenia (LON) with anti-CD20 treatments such as Gazyva/obinutuzumab, Mabthera/rituximab, Arzerra/Ofatumumab, which can occur within 12 months after the last infusion, though it's more likely in the first 6 months afterwards. I haven't seen an update for targeted therapies, but with FCR, the risk of LON is considerably higher when you've needed G-CSF shots to boost neutrophils during treatment.
The good news is that his neutropenia was identified and he is having appropriate treatment, plus you've both plenty of experience at keeping your husband safe while he is neutropenic. I've had about 200 G-CSF shots and averaged a neutrophil count of 1.0 over 11 years before starting treatment, dropping as low as your husband at times, but my neutrophil counts been in the normal range without assistance for nearly a year post treatment. It took me a bit over 4 months after finishing venetoclax and acalabrutinib for my counts to stabilise in the normal range.
Neil
Thanks so much Neil. Last Gazyva was first week of August. I hope it resolves. He experienced neutropenia and needed Neupogen several times during October and November during the higher doses of Venclexta. I hope this is what it is and can be monitored and isn't CLL related.
My husband completed 6 rounds of FCR in Oct 2020, he still required GSF injections until June 2021, but developed a very severe bout of shingles in April 2021.
In hindsight we wished he’d been kept on antivirals until his neutrophils had recovered- it may be worth checking that you have shingles protection either from vaccination or antivirals, as the shingles was ( and still is) the worst experience ever.
Thank you. Good idea about the shingles vax.It was shingles back in 2015 which was when his CLL was diagnosed.
Doctor today insisted on a bone marrow biopsy after just 2 months ago came back with u-MRD. So frustrated as only symptom is neutropenia. Will report back. Got 3 GSFs so far still low.