Neutropenia

[PennyLane2024]

I had my fifth V & O infusion today. My pre infusion blood test showed that my neutrophils dropped from 2.1 to 1.37 in past month. I am back to weekly blood tests and more restrictions on fun things I can’t do. My Venetoclax will be reduced if I go below. This is first hiccup in my treatment. Has this happened to anybody else? How worried should I be. Every other number was great and I no longer have anemia.

[cajunjeff]

To my understanding Penny, neutropenia is a common complication of V plus O therapy. Your doctors are likely very experienced with strategies to combat neutropenia, which may include reducing your venetoclax dose for a while and/or giving you neulasta (Pegfilgrastim)shots to stimulate your neutrophils should neutropenia become a problem.

Good luck to you. I think the fact your other labs have improved is a good sign that any neutropenia problems you might develop will be transient in nature.

[AussieNeil Partner Administrator]

My neutrophil count varied between 1.1 and 1.3 prior to my 5th obinutuzumab infusion and I was having almost daily G-CSF injections at that stage to support my neutrophil production. I needed my final G-CSF injection prior to my last obinutuzumab infusion to lift my neutrophil count from 1.55 to around 2.0. It was my last G-CSF shot after needing them up to daily for the prior 2 years. I never needed to reduce my venetoclax dose during treatment, despite being on acalabrutinib. Another person on the same trial as me who also had chronic neutropenia, but was on the acalabrutinib+venetoclax trial arm, struggled through the venetoclax ramp-up, while I breezed through it. After treatment, my neutrophil count was the best it had been for 14 years - from a few years prior to my diagnosis. (I had silent SLL gradually reducing my bone marrow capacity and expanding my spleen prior to my diagnosis, which resulted from an investigation into why I had become stage 4 neutropenic.)

Hang in there, it gets better and your are doing great with blood cell production otherwise. Just watch out for Late Onset Neutropenia, which can occur for up to a year after your last obinutuzumab infusion. That's more likely to happen if you've needed G-CSF shots to support you through treatment. See: healthunlocked.com/cllsuppo... So you'll need to keep paying attention to reducing your infection risks for another 14 months or so. See the section on living with neutropenia towards the end of this pinned post: healthunlocked.com/cllsuppo...

Neil

[PennyLane2024 in reply to AussieNeil]

Thanks Neil and Cajun Jeff. I will be reducing Venetoclax to 300 grams if I fall below 1.0. I have 2 more infusions.

One more question for folks. How long were you on Watch and Wait between your uMRD from V+O and your second line treatment? I am done with V+O in May, 2025 my son starts high school a few months later. I am praying/hoping that I won’t need another treatment until he graduates in May 2029.

[AussieNeil Partner Administrator in reply to PennyLane2024]

I finished my first (AVO) treatment in January 2021. My lymphocyte count remains normal, as do my other blood counts other than my platelets, which are a bit below normal (so CRi - complete response with incomplete haematological recovery) and I've just had my spleen confirmed as fine. (I began my CLL/SLL journey with an SLL presentation, where my spleen was a couple of centimeters below my rib cage.) I'm unmutated IGHV and CD38 negative, with a 'normal' karyotype. Watch for the long term updates on Time to Next Treatment (TTNT) for how those who are Trisomy 12, Notch 1, Unmutated folk go, for some better guidance on your likely time in Watch and Wait No2.

Neil

[Paulhonda in reply to PennyLane2024]

My neutrophils went as low as 0.2 but I was never required to reduce the Veneto dose. G-CSF injections worked each time to bring reading back to over 2.

[Floxxy]

I'm on V and R. I have 8 months left of my 2 year course. My neutrophils have always been a problem. They are currently at 1.1. I'm on weekly Filgrastim (GCSF) injections. My first line treatment was FCR and my neutrophils were a problem then too. X

[Michaelcll]

Hi Penny, l am on cycle 11 of V+O. HB 152, WCC 2.8, Platelets 86, Neutrophils 1.2. Venetoclax 400mg a day. Hope this helps. Kind Regards Michael.

[thb4747]

Hi Penny, I’m in my 7th year of Venetoclax monotherapy and neutrophils have been a constant issue. In the first 6 months they dropped to as low as 0.3. I had to have a number of G-CSF injections and my dosage was reduced firstly to 300mg and then to 200mg. I’ve stayed at that level since November 2018. I’ve also been in remission since then.

Neutrophils remain an issue, however. In June they had dropped to 1.0 and my haematologist and I had a discussion about possible ways forward — G-CSF again, reduce the dosage to 100mg or stop the treatment altogether. I had a blood test last week and they were back at 1.7. Indeed him again in September.

Go well.

[Floorfax]

Hi PennyLane2024; Yes, this happened to me when I got started with my 1-year V&O treatment. It actually started with me after my 1st infusion treatment. The Dr's I have at the Phx, AZ Mayo Clinic, postponed my 2nd infusion & had me come in for a "booster shot" to increase my white blood count. A follow-up blood work showed enough improvement in the white #s (& red) that we moved forward with my 2nd round of infusion. The Venetoclax pills had not yet begun, so I was not past Cycle 2. I wouldn't worry too much about your #s at this point. Ask about a possible shot to increase your neutrophils. I will say I'm a bit surprised this is happening so far into your treatment, but as long as it's monitored, I wouldn't be too worried. I also am assuming if you're on the Venetoclax portion of your treatment, you've "ramped up" to the 400 mg / day level? If so, that happened to me as well after cycle 4 or 5, I think, and it was decided for me to back-off to 300 mg / day & I've stayed on that level since. My neutrophils have stayed consistent & my reds - Hemoglobin & Platelets - have steadily increased. Again, wouldn't worry too much about this. Whatever is happening, a good Doc should be able to get you through it!! Sincerely; Floorfax1

[Poodle2]

I was neutropenic from day 1 of O+V till the end. My V was never reduced but I was on regular GCSF injections (Filgrastim) to boost my neutrophils. At the beginning daily, moved onto 2-3x a week, 1x a week and towards the end the dose had to be increased again. It is a very common side effect (about 50% of patients suffer with it). 1 month post treatment my neutrophils were back to a normal range and I haven't needed GCSF injections since then. It might continue to be an issue but it should resolve wheh you finish.