CLL America from Patient Power
675 members259 posts

Venetoclax information

Hi,

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.

Any help or information would be greatly appreciated.

Thanks

4 Replies
oldestnewest

I am nervous with you. My hubby with CLL is 71yo. Is there any way you can contact the nurse of the oncologist/hematologist who was seeing your dad? And tell her what is doing on with you dad. Hopefully she would have some input.

Linda (Spacee)

Reply

Hi Stevediam,

You posted on a new forum that has infrequent participants so far. You may want to consider posting/following healthunlocked.com/cllsupport which has world wide participation and much more activity.

To reply to your concerns. 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. getpalliativecare.org/healt...

As long as his outpatient CLL expert doctor is full 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

Reply

Thank you. Results getting worse, platelets down to 5000. Outpatient specialist added a steroid and rituxin to the regimen. Very worried.

Thanks again all.

Reply

Stevediam I am hoping that the situation stabilizes quickly and you are able to see those numbers go back up soon.

Reply

You may also like...