Update on FIL -Venetoclax as a Monotherapy, Pancytopenia and Myelodysplasia

[JoeMcDote]

Hi everyone

I have been meaning to post an update for months but things have been changing so rapidly, every day would have been a different story.

So we did get to see a specialist who did a BM biopsy and recommended Venetoclax as a Monotherapy as his BM was 50% CLL. We were told it wasn't chemo but the haematologist at this end insists on calling it chemo. We were also told it wouldn't affect his Pancytopenia and Myelodysplasia as it was a targeted therapy.

It took 6 months for him to be started on the treatment at this end.

His requirement for blood products did not improve from being on the treatment ... the only thing that worsened were his platelets which until the treatment had stayed around 20 but whilst on treatment started to drop to as low as 4.

The haematologist at this end who remember told him he had no more treatment for him and he should start looking for a hospice contacted the specialist who asked for another BM test.

In the meantime FIL started with what he thought was gout in his toe and the family decided it would probably go on its own and failed to seek medical advice until the day of the BM test when it was swollen like a balloon. They immediately took him off the venetoclax and put him on IV antibiotics. This was a month ago. He has been in hospital ever since and now also has a chest infection. The haematologist eventually did the BM test 2 weeks ago and sent it to the specialist with his concerns that the chemo had negatively affected his bloods and his need for transfusions hadn't changed.

We have just had a meeting today with the haematologist (I had to do over the phone due to illness). There is no CLL in the bone marrow so the venetoclax obviously did its job. However, because his need for transfusions hasn't improved and the Myelodysplasia appears to have got worse they are not putting him back on the venetoclax.

Had he sought medical advice as soon as his foot became infected would they have kept him on the venetoclax to zap the C cells as soon as they appeared?

Ty for reading and for any advice x

[Spark_Plug]

I'm sorry for the dwindling hope they present. Technically His specialist could name their breakfast chemo and not be wrong ( this is a stressful time and little irritations serve a function, they distract from the elephant in the room, sometimes it actually helps us to keep from being resentful at what the limitations for healing are).

I'd assume there is an infectious doctor on the team, what input have they given?

As far as, if they, had they, done... this is normal and part of the process, don't chide yourself. The focus should be continue his care on his terms but, caring for his comfort and emotional needs doesn't have to be prescribed by a doctor and doesn't have to be labeled hospice, palliative to begin. It won't only help him, it helps you as well.

Hope & best wishes,🙂💐

[Jm954 Administrator]

Thanks for the update. That toe must have been so painful for him but I'm not sure that dealing with it any earlier would have made any difference with respect to being able to stay on Venetoclax.

The Venetoclax has done its job and cleared his marrow of CLL and normally this would leave space for the marrow to regenerate. Unfortunately, the Myelodysplasia (MDS) is preventing the repopulation of his bone marrow with healthy, normal cells of any type. This is now very difficult to treat other than with supportive care such as blood transfusions and maybe stimulating factors for neutrophils and platelets.

Have the doctors indicated what the plan is for him now or have they only suggested hospice care? Wishing you all the very best

Jackie