Hello. I hope it is okay to post here as it is very difficult to find dedicated TPLL forums for discussion.
My Dad was diagnosed with TPLL in 2013 after further investigation into a growing wbc trend he picked up early as part of his overall health checks that he closely monitored.
His first line of treatment was campath by which he received good varying lengths of remission from each of the courses he received over the years until this year, when the campath did not achieve the same positive result we previously experienced (only minimal wbc count reduction and not holding this time). The decision was then made to proceed to chemo which he did not respond well to and resulted in strong side affects.
He has now commenced his first week of venetoclax (not in combination with chemo) and I have a few questions if anyone has had experience with TPLL with venetoclax or experience with venetoclax with another leukemia. As it seems to be a relatively new treatment, I am interested to know how others are going and learn as much as possible about it.
- Has anyone had any reactions to certain foods whilst on venetoclax? Dad had an intensely painful cramp in both hands and they would go ‘claw like’ when he tried to pick something up. He is wondering if processed meats may have caused it. But we are unsure if this may also just be a symptom of the high wbc count or reaction to venetoclax..
- I’m interested to also know how others’ lymphnodes responded. At what point did you note that they were reducing? Dad has not seem a change yet and we are hoping that we may start to see them go down when he goes up to 50mg next week.
- At what point did you experience a notable reduction in wbc count?
- How long have you used venetoclax?
- What did you take for prevention of tls and sepsis?
-Has anyone gone onto stem cell after venetoclax?
-Has anyone had to manage DVT during venetoclax treatment? If so, what did you take ? Dad developed DVT shortly after chemo.
Looking forward to hearing from anyone who would like to comment on any of the above, thanking you so very much in advance.