MY NEUTROPHILS ARE GETTING LOWER AND LOWER. I STARTED VR treatment 3 months ago
My Oncologist asked me to stop taking VENETOCLAX 400mg for 10 days, before starting again.
Has anyone experienced something similar? THANK YOU for any advice or comments ?
I do not think this is uncommon. Did you get a growth factor shot to help stimulate neutrophil growth?
No, what is this growth factor shot? And where do you live?
It tells your bone marrow to make more neutrophils. Common brands are neulasta or neupogen. There are generic versions of course.
It is a little shot you can have in your belly fat. Neulasta is one and done. Neupogen can be given as a daily dose. One isn’t better than the other but my oncologist favors neulasta.
en.wikipedia.org/wiki/Granu...
I am in the USA.
Your doctor should be familiar with it. The drug has been around a long time.
Yes, this happened to me also. I started Venetoclax monotherapy in April 2018 when my neutrophils were 2.2. Within 2 months that number dropped to 0.5. I had to give myself GCSF injections 5x weekly for a few weeks and my Venetoclax dose was reduced to 300 mg. In September 2018 the number dropped to 0.3 and Venetoclax was paused for 1 week and GCSF injections started again.
I continued the GCSF injections until December and my dosage of V dropped to 200 mg.
On the bright side I took a trip to South Africa and Tanzania in November 2018 on the proviso that I would have a weekly blood test which I had to arrange myself. I had blood tests in Johannesburg, Arusha and Stone Town.
I’ve remained on a 200 mg dosage and my neutrophils hover around 1.0. My haematologist is only concerned when it goes below that level. In February 2022 the number dropped to 0.9 and I had 2x GCSF injections. My level as of last month is 1.0. It doesn’t seem to cause me any problems but I’ve been having 4-weekly IVIG infusions for 10 years and that has helped enormously
I wish you well.
IVIG infusion , is this immunoglobin infusion?
Yes. Sorry, it stands for intravenous immunoglobulins. And my shots to boost neutrophils were branded Filgrastim. 5x weekly was the most I had to do.
Yes. My neutrophils dropped to 1.0 on starting Venetoclax, but they recovered gradually over time and are now in the normal range. I wish you luck.
THANKS. Best to uou on your journey!
My neutrophils dropped to 0.1 and I’m about to start OV. GCSF injections have helped to push up the levels.
what is GCSF?
Granulocyte colony stimulating factor (G-CSF)
G-CSF is a type of growth factor. You might have G-CSF after chemotherapy to help your white blood cells recover after treatment. Or you might have it before and after a stem cell transplant.
By generating more white blood cells, it also generates neutrophils.
Note: if you take G-CSF to increase neutrophils, your white blood cell count (WBC) will also be increased so don’t be surprised when looking at your next blood test results
my neutrophils also dropped when I was on Venetoclax, I had 6 weeks off treatment to let them build back up and finished the course on 100 mg per day. The good news is I am in complete remission so hopefully you will have the same outcome 😊
wow, that's amazing! Where do you live?😊
I am in the UK
Hi Singist, just wondering did you take venetoclax as a mono therapy or combined with something else? Happy you are in complete remission and long may it continue. Sue.
Yes as others have said I had very similar problems with O&V. I started obinutuzimab and venetoclax treatment in march 2021. As soon as I started on V my neuts decided to depart the field of battle. I did get down to 0.2 a couple of times but throughout the 12 months they struggled hovering around 0.9. I had to give myself GCSF shots regularly sometimes 7 days in a row but only had to pause V once before restarting on 400mg.Now the good news I have been UMRD since April 2022 and my neuts have come out to play again. They now are around 2.9 and I haven't needed GCSF for 18 months. I feel great, in fact better than I have for years. So don't despair the V is working it's magic but some good guys do get caught in the crossfire. However, they will recover but it does take time, probably at least a year so you just need to be patient and take all the usual precautions to avoid infection including possible skin problems (cancers?) while you are vulnerable and don't ignore any signs of illness, get them checked quickly and you will be fine. Lots of luck with the rest of the treatment. Patrick
Just curious about what protocols you used during the months you were taking Venetoclax (assuming it was 12 months) to help with immune system…masked? Shelter in place?
I was only 3 months with Venetoclax and received 1 infusion of Ritubimab. Not sure what masked and shelter mean in that context. Please clarify. THANKS 🙏🏼
Hi again, yes the full treatment was 12 months. Starting with the rounds of O and then V being added and ramped up as I am sure you are also doing. I was just very careful and avoided any crowded places. I wore a mask when shopping, we didnt go to pubs and restauarants unless we could sit outside (obvs not during winter months!) I missed cinemas, theatres museums and exhibitions but just felt the risk was not worth it although I am sure you could do all of those if you wore a good mask but I hate masks so decided not to visit such places. I was also very careful about hand washing if I was out and about. My biggest problem was keeping a reasonable distance from my 4 gorgeous grandkids (all under 4 at the time) as they are such good breeders of bugs.
I did pretty well. Avoided catching Covid until just a few months ago but I did have several nasty chest infections which were all sorted with antibiotics. One thing I noticed (and I think other have too) is that minor woulnds take much longer to heal. Cuts and cracks to your hands can take weeks to properly heal whereas before CLL and chemo treatments I hardly noticed them. But its a small price to pay. So in general I was really just following the rules we all had during covid lockdowns. Masks, keeping 2 metres away from people, frequent handwashing, careful with food preparation, disinfecting work surfaces etc. Hope that helps. Patrick
Thanks!
I get it. Thanks and all the best for a good life, safe and joyful.😊
You say in your post that you "started VR treatment 3 months ago". What does the "R" stand for? Rituximab?
YES.
The MABs (eg Rituximab / Obinituzumab) often cause neutrophil counts to plummet. Perhaps you haven't started Rituximab yet?
I have had 1 Ritubimab infusion.
I ask only because my neutrophils plummeted when I was treated with Obinituzumab.
I am currently on Rituximab and Venetoclax as a second line treatment. I had FCR as a first line treatment 3 years ago. My neutrophils have always been low whilst on treatment so I currently have Filgrastim injections weekly to help. I am 10 months into my 2 year treatment plan and feel absolutely fine. X
Thank you!
unairdefamille,
It is not uncommon to have low neutrophils during treatment with Venclexta. Although, I actually developed neutropenia (.96) while on obinutuzumab the day that I was to begin the combination with Venclexta. I received a G-csf that day and was able to continue treatment the following morning. Bear in mind that responses varies in individual patients.
I was able to maintain neutrophil counts between .98 - 1.4 during O+V and above 1.0 when I was on Venclexta alone until I completed treatment.
Good that your oncologist is closely monitoring your counts and managing treatment accordingly. Let us know if the dose reduction works, or if you add a G-csf.
There is a lot of success in this area lately, Please be encouraged!
JM
Thank you for your encouragements! I needed it. 😊🙏🏼
WE are in it to Win It!
Interesting. It looks like Obi was the culprit in your low neutrophils, not the Venetoclax necessarily. That's the point I was trying to make from my own experience.
Obinutuzumab was the first drug, and yes low neutrophils occurred because of it. The G-csf brought them back up to around 6.2, and after I stopped obin and continued on venclexta, they dropped again below 1.0. Looking at research publications, it appears that low neutrophil counts can be a side affect of all immune suppressing drugs used in CLL treatment.
As one might say, "It is part of the cost of doing business", cuts right into the profits.
I have been on 400mg V for 6 months following the usual ramp up and 6 infusions of R. I have been on GCSF jabs for that period, the dosage being varied between one and 3 jabs a week depending on my neutraphil count which has varied between 0.5 and 4.9. I haven't been asked to pause the V.
Graham
where do you live? And do you get side effects from the GCSF? BEST OUTCOME!
I am in the UK - Wales to be precise. I am fortunate in that I have had no side effects from Venetoclax, Rituximab or the GCSF jabs, other than the occasional bruise on the jab site.
when was the last Bone Marrow Biopsy done. I had to be taken off the Venetoclax because my neutrophils kept dropping. I do have Notch 1 and because I was treated about 12 years ago with Bendamustine I developed MDS.
Best to you
Dave
once my neutrophils dropped below 1, I had a shot. This brought them up . Will be checked again next blood test . The hospital gave me more injection to do myself and they are in fridge at home but not told to carry on injecting as yet.
Venetoclax and Low Platelets
Neutrophils staying low
High neutrophils low lymphocytes low IGg
Low WBC on Venetoclax but feeling ok
