After suffering a major case of hemolytic anemia in July, I was put on Venetoclax and actually had stellar results for three months, until about a week ago now. After my blood tests moving into normal ranges on almost all numbers, I find myself in a situation where my WBC have moved to a below normal range, as have my RBC, HCT and HGB. They’ve all dropped 25-30% from my last test and I am now anemic again. i also found my IgG has dropped from 1000 to 422 and I have to have an infusion of IVIG this week. I can’t quite understand why this might have occurred. They tell me I am not hemolyzing again, but I am surely not bleeding from anywhere, and I haven’t any idea what could be going on. Anyone have any thoughts or similar outcomes? Last time I became anemic I had to have 8 pints of blood and was in the hospital for 12 days, and don’t want to repeat that again.
KS
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KevinCLLITP
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Firstly, the development of low immunoglobulin counts is common in CLL. It's because during watch and wait, the CLL cells inhibit the process by which we respond to infections and vaccinations, so we don't make many new plasma cells (mature B-lymphocytes). Also CLL inhibits the productivity of plasma cells. Treatment tends to worsen the situation, because all currently approved CLL treatments kill good B-lymphocytes as well as CLL cells. Some T-lymphocytes can also be killed. End result of treatment is that there are less healthy lymphocytes around to produce new plasma cells, further exacerbating the situation. High dose IVIG can also help overcome auto-immune complications such as Autoimmune Haemolytic Anaemia (AIHA).
With respect to your blood counts, firstly having a low lymphocyte count is the aim of treatment, but because, as I mentioned above, treatments also kill healthy B-lymphocytes and sometimes healthy T-lymphocytes, it's not at all unusual to have a low WBC from treatment. What is important is that you have sufficient neutrophils to fight infections, so you need to look at the differential absolute white blood cell counts to determine which are low.
I presume you are now on the full dose of Venetoclax (400mg per day)? Venetoclax can suppress the bone marrow (including importantly neutrophil production) and your previous treatment history may also be a factor. You need to raise your concerns with your specialist, who should try and identify what is causing your low blood counts so that they can make the appropriate modifications to your treatment. That might involve a bone marrow biopsy to find out exactly what is happening. The outcome might be a short break from Venetoclax treatment or perhaps a reduced dose to see if that corrects your blood counts.
Hey Neil, I am at Dana Farber tomorrow but just reviewing my last set of results and I am seeing my Abs Neutrophils at 1.29 which is down in the Neutropenic range and my IgG dropped to 422 from 1051 over just a month. I feel like I had some quick results but that now I am going beyond where I was supposed to be. When you were experiencing Neutropenia, what was your absolute/differential count?
I've been neutropenic since 2006. It was an investigation into why that resulted in my CLL/SLL diagnosis, when my absolute neutrophil count plummeted to 0.4 in early 2009. so I had to adapt to a neutropenic lifestyle. My average neutrophil count since diagnosis has been around 1.0 and I rarely managed to get above your current count until I commenced regular G-CSF injections in 2018, after a few emergency hospital admissions for IV antibiotics. Specialists like to see the absolute neutrophil count above 1.5 (severity level 1 or better) and certainly not into severity level 3 territory (below 1.0). Read up on my tips of living with neutropenia towards the end of this post: healthunlocked.com/cllsuppo...
Your rapid drop in IgG is rather unusual, so it will be interesting to see if it improves. If it drops further and you start having serious infections, your specialist may prescribe IgG infusions.
Found out my kidney function had dropped precipitously through all of this now. More to follow. I think we need to drop my Venetoclax prescription down a bit.
Sorry to hear about your troubles. I was in The avo trial and am off therapy due to a drop in platelets HB and neutrophils. Platelets have partially recovered but continue to have chronic hemolysis which is not explained by CLL producing antibodies. I am in complete remission at this point. Also my neutrophils are still low despite being off therapy for 6 months. My doctor at Dana told me that she has seen hemolytic anemia post treatment and prolonged recovery of bone marrow after FCR and maybe this is similar after venetoclax? Just a guess. I was offered rituximab but will wait until the hemolysis gets worse since I don’t want my immune system weakened further in the Covid situation since I am a front line worker. Hope you get good answered.
i have had 3 Rituxan treatments this time. This is my fourth time (round ) or Rituxan in 8 years. I have had four treatments each time before. After my first round, I suffered a serious infection which required surgery and a 4 month convalensence. After the third round, I had another bad infection in the groin which we initially thought was an occurrence of testicular cancer. After 3 times with Rituxan in this series, I have significant pneumonitis and now my kidney function has dropped precipitously (maybe by 40%, with 80 oz of fluids consumed a day). I am continuing with venetoclax, but some very odd things are going on with the venetoclax and rituxan combo. In addition to the pneumo and kidney, I have a very significant facial tick/spasm which causes a sharp move to the left and scrunching of the face, which I can’t control. It initially accompanied the cough but now occurs in the evening and through the night sometimes every 3-5 minutes. I think we are going to say goodbye to Rituxan midway through here, and I have a feeling my Venetoclax dosage needs to be reduced for a bit.
Diagnosed in 2012, I went into a clinical trial in 2014/15 that honestly set me on my behind for well near a year and a half to recover and I was in good shape for 23 months. I had to start Ibrutinib in the third quarter of 2018 but by January I was having significant heart issues which took another six months to recover from. In July, I had the hemolytic anemia after four daily doses of IVIG to get my platelets high enough to have a biopsy in my foot, that ended up being a concentration of leukemia cells encapsulated by cellulitis. 8 units of blood later, I started Venetoclax immediately, and had three great months to be honest and my numbers improved significantly, but after starting Rituxan 8 weeks ago, I have had some various serious issues going on which are tough to define.
So, I take any comments as advice to help me out here.. I am also at Dana, treated there since early 2014.
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After Venetoclax
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