Venetoclax info

[Stevediam]

My father started venetoclax 1 week ago. He is a 71y/o, 17p CLL patient. He must be an inpatient at UPENN for fear of TLS for each ramp up week.

When he was admitted this Monday for week 2, his CBC showed a tremendous reduction in hemoglobin (currently at 7.8) and platelets (currently at 8000) His numbers were never great but while on a trial drug the past 12 months (TGR-1202), they usually hovered around 50-plates & 11.5-hemo.

Since Monday he has received 2 bags of blood and 3 bags of platelets, which have not produced better results. They held his venetoclax dose escalation yesterday and kept us at the 20mg dosage.

They are hoping to increase the dosage today to 50mg. They also now want us to do a bone marrow biopsy and it appears they are adding rituxin and a steroid to his treatment tomorrow. I was also told that this is now a day by day admission and we shouldn’t be expecting to be discharged anytime soon.

As you can imagine, I’m quite nervous about these results as this is the last option to treat him. While our outpatient oncology team is great at communicating, the inpatient team has left much to be desired, and I fear I’m not being told exactly what is happening and what we should expect.

*update- plates are now down to 5000 and dr has now added a steroid and rituxin into the regimen.

Any help or information would be greatly appreciated.

[shoshanaz]

I am very sorry to hear that your father (and you) are having such a difficult time. I don't have any suggestions medically -- about the best I can do is send a virtual hug and add my hope to your own that the doctors can find a path to better health for your father.

[lankisterguy Volunteer]

Hi Stevediam,

Repeating my response from yesterday on another Health Unlocked group:

I have been treated 4 times for my CLL and went through the Venetoclax ramp up last year at NY Presbyterian. I had similar problems with communicating as an inpatient vs. my excellent experience with my CLL Expert doctor as an outpatient.

I had to work hard and assert myself to get in contact with my CLL Expert when I felt like the inpatient staff was treating me like the furniture.

In your case, you may need a legal Medical Power of Attorney and/or Health Care Proxy document signed by your father to be able to intercede on his behalf. Otherwise the HIPPA laws can restrict what the medical staff can discuss with you.

As long as his outpatient CLL expert doctor is fully involved in the decision making, your father should be getting the best possible treatment.

As I understand it, Venetoclax is very effective at removing CLL from the bone marrow, but it takes time for the cells that grow into red blood components ( hemoglobin ) and platelets to recover. So the treatments he is getting may be effective but require patience while he is healing.

Len

[mnmnewtons]

My experience (70 yrs. old) with 17p del. and starting inpatient ramp up on Venetoclax (9 weeks ago) has been similar (but not nearly as severe) in regard to numbers going down. It took 4 bags of red blood cells to get my hemoglobin to 8.0 but my platelets, though low, did not require infusion. Neutrophils bottomed out to 0.0 so I had a Neulasta shot. I have not yet started on Rituxan. Venetoclax can be a bumpy ride at first.

My hospital stay was awful for lack of information and in retrospect some sub-optimal treatment decisions. Corner the inpatient doctor and get informed or get your outpatient team involved.

Did he have a BMT before going on to the Venetoclax? The pending one will have valuable information for the treatment plan going forward.

Rick