TPLL - Experience with venetoclax/similar treatment

[jaye0]

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.

[AussieNeil Administrator]

Hi Jayeo,

While obviously our ability to provide relevant support and understanding will be limited by the differences between CLL and the far more rare T-cell Prolymphocytic Leukemia (TPLL), I hope you can benefit from our shared in common information on blood testing and treatment experiences.

Here are the community posts on Venetoclax: healthunlocked.com/search/p...

And here are some on blood test understanding and tracking (but bear in mind comments will have a CLL emphasis:

cllsupport.org.uk/cll-sll/s...

healthunlocked.com/cllsuppo...

Venetoclax is arguably the most powerful and fast acting drug for CLL; I hope your Dad does equally as well on it as those with CLL do.

Neil

[jaye0 in reply to AussieNeil]

Thank you very much AussieNeil for your reply and for the links I will have a proper look tonight. Yes I certainly understand that venetoclax may have a completely different effect on tpll. We hope it will be as successful as it seems to be with CLL. But this forum has been wonderful to find just to learn of others’ experiences with venetoclax, it’s side effects and it’s efficacy in reducing high wbc counts.

[BeckyLUSA]

Neil has given you the best links for info. Just an answer for one of your questions. The Venetoclax can definitely cause muscle cramps. I have had the same reaction as have others on the forum. My hands are the worst.

BeckyL USA

[jaye0 in reply to BeckyLUSA]

Hi BeckyLUSA, thank you that’s really helpful to know. How have you managed the cramps, if you don’t mind me asking?

[BeckyLUSA in reply to jaye0]

Thankfully they are short in duration but come and go. Mostly I just wait them out. Sometimes I run very warm water over them and it will ease it more quickly. My hands are not as painful as my legs. I can pull my hand out if the claw position with the other hand. My legs just absolutely kill he sometimes and there is nothing really to do until I can move it enough to stop the cramping.

[jaye0 in reply to BeckyLUSA]

That’s a good tip, thank you BeckyLUSA. We’ll give that one a try! Hope your cramps ease soon, especially the leg ones

[LAinNYC]

My husband has CLL, went through Campath treatment, and got a 2 1/2 year remission. He had a "robust" initial response to Venetoclax, but his hemoglobin counts are not coming back to normal yet, and Dr. Lamanna doesn't yet know why. TLS was prevented with constant IV hydration during his 2 week hospitalization Venetoclax ramp up. I hope this helps. Best, Laurie

[jaye0 in reply to LAinNYC]

Thank you very much LAinNYC. It’s interesting to know of someone who has done campath then proceeded to Venetoclax. I hope they can find out whats happened to the hemoglobin counts and that that normalises soon for your husband. Wishing you all the best for your husband’s treatment.

[Cindy1462]

Hi I can’t help as I haven’t had your dads previous treatment but I am about to start venetoclax and I have BPLL. I have bern on Ibrutinib for 9 months but that is not working anymore. I have terrible cramps already and put it down to the Ibrutinib but maybe it’s the disease itself? I even get cramp in my tongue when I take tablets and that is quite scary! I hope your dads symptoms improve and venetoclax gives him a long and happy remission. Cindy.

[winterwild]

I am taking Venetoclax and take magnesium for cramps. Magnesium oil can be sprayed on and is absorbed quicker than tablets. I have not has as much trouble with cramping with venetoclax as with other treatments but I continue to take a good quality tablet and carry a small bottle of oil which works quickly. My lymph nodes did not respond as quickly as Ibrutinib but have gone down considerably since first taking Venetoclax. I progressed to 200mg with a few weeks of holding off ramp up until my bloods recovered and have been on 200mg for a few months as my bloods have been normal. So far for me this has been by far the best treatment I have had, although I feel a little fatigued. I hope your dad responds well to it.

WW