Venetoclax Question

[Elam]

I have been on a trial with Venetoclax and was taken off 3 times due to low Neut.#. Each time the numbers recovered quickly. This time I have been off about a month and the first 2 tests were moving in the right direction with Neut# at 1.08 and about 2.4. But the test this morning was at 0.98. Has anyone had experience with fluctuations like this?

[PlanetaryKim]

Sorry you are struggling with this! I was taken off venetoclax in April due to low neuts. Was put back on after a week and so far they are holding. I was told that if I have to come off a 2nd time for low neuts, the protocol will be to restart me at a lower dose. Are they doing that with you? Good luck to you!

[Elam in reply to PlanetaryKim]

Thanks. Went to 300mg and then to 200mg and now off completely. Started the Venetoclax in Oct so was on full dose of 400mg about 5 months when issues started. My doctor is inclined to stop treatment thinking that it has accomplished desired result. Also had benemustine and immunotherapy early in the process.

[PlanetaryKim in reply to Elam]

Your doctor may be right about it having done its job by now - especially since you took it in combo with the other drugs. is there any way you can get an MRD test to find out?

[Elam in reply to PlanetaryKim]

My doctor likes to depend on blood tests and tends not to want to do bone marrow biopsy. Possibly some of the peripheral blood tests or blood smears while not as definitive as the biopsy can be done.

[PlanetaryKim in reply to Elam]

Good plan!

[Naka]

I had low ANC (0.88-1.2) from day one. About 3 1/2 months into treatment on full dosage my CLL doc lowered my V to 300mg a week and the following week to 200mg. What I noticed is that my ANC dropped low every time after my infusion. Was told we'll go back up on the V when I'm done with my last infusion.

[Canuck901]

What was your trial ?

[Naka]

V&O. Btw after lowering the dose my ANC went up within a week to 2.4

[Nicebaps]

Yes, frequently. If it goes below I inject myself with G-CSF and that elevates the neutrophils.

[mros]

I'm in pretty much this exact situation. I was on V+O for 6 months and then on V alone for a month when my neutrophils dropped to .5. I went off Venetoclax for a month and the numbers went back up to 2.5. I went back on and they dropped to .9. I went off again and now have been off for 4 months with my neutrophils stubbornly between .9 and 1.1 and my WBC around 1.8 or 1.9. My oncologist would like to perform a bone marrow biopsy to see what is going on but doesn't want me to come in for that until the COVID situation improves. When treatment began last year my bone marrow had come close to stopping work and I was on weekly infusions and nearly died twice whereas now after the medication and a lot of training I'm back in the best shape of my life (which is saying something at 68+) and trail running in the mountains with my wife around 40 miles a week. My hemoglobin and RBC levels are back to normal. Given that I'm doing well, my doctor seems inclined to keep me off Venetoclax until my neutrophils recover (if they ever do) and wait for the worst of the pandemic to pass before exposing me to the potential of infection in a clinic/hospital setting for the purpose of getting a better understanding of why.

[Elam in reply to mros]

Sounds very familiar. Congratulations on the pace of your recovery. My RBC and hemoglobin are both in the normal range. I have been doing hiking and backpacking as things start to open up, and do my daily walks and exercise. I have been dealing with congestion and cough for months and I am hoping that my immune system can recover and rid me of that.