17 years in! Vclax vs platelets

[Lawand1]

Long time no post! 17 years with CLL my general health remains excellent. Now 2.5 years on Vclax (mono and on it indefinitely), after a very shaky start (wiped out neutrophils and platelets which meant I got pneumonia and sepsis), the last two years I’ve had no side affects and health has been fantastic, but since Sept last year my already low platelets (always around 100 since doing FCR back in 2010), have gone to 80 to 51.

All other markers are great. What’s going on anyone? Appreciate any feedback before I meet Dr on Thursday.

more background info in bio.

Thanks

[SofiaDeo Administrator]

Since these drugs can affect bone marrow, and you had some drastic side effects initially, it's within the realm of possibility that this is some "longer term" effect. Somewhat analogous to how obinutuzumab may cause a late onset neutropenia months after the last dose. These drugs are *relatively* new, and the number of patients in trials is much lower than for, say, heart disease or diabetes. Cancer drugs get fast tracked, and it can take a decade for docs to really suss out side effects and their percentages. The trial that got venetoclax approved had what, 400 patients? Statistically significant, but compared to thousands taking it over a decade, the percentage of known side effects may change, as well as a few new ones pop up.

IDK your history/chart, but I stopped venetoclax monotherapy after 2 years even though my CLL count wasn't zero. I was off it 2 years, now it looks like I will be starting treatment again 2&1/2 years after stopping. It was nice taking a drug holiday.

Not everyone can do this, but if you are concerned about marrow suppression, perhaps this is a possibility, instead of a dose reduction, or steroids if they think an ITP has started. But if you aren't bruising, or have petechiae or blood blisters in mouth, no nosebleeds or cuts/scrapes that ooze, or black tarry stools, you may just be monitored more closely.

We are all so different. Sometimes something works well for most everyone, but there are also many of us who don't react like the "typical" CLL patient.

[Lawand1 in reply to SofiaDeo]

Thank you for your comprehensive answer, I appreciate you taking the time. As my lymphocytes are stable I’m assuming it the actual drug. Whether it’s a holiday or lower dosage I’ll let the group know. You got a good remission from V, so wish you the best for what comes next.

[Rog69 in reply to Lawand1]

I'm in exactly the same situation. 2 years + on venetoclax as a mono, and my platelets are slowly falling. All other bloods stable and in the norm. It was agreed at my last appointment to monitor the situation. There was no suggestion about what might be causing the slow decline of my platelets. Can you let me know how you get on at your next appointment.

[Lawand1 in reply to Rog69]

I will indeed. I also sent you a message

[Lawand1 in reply to Rog69]

You okay Roger?

[Rog69 in reply to Lawand1]

All good at the moment. Thanks for asking. Due for my next checkup at Addenbrookes, Cambridge in six weeks time. My blood results have been stable for some time, with exception of my platelets, which have been steadily falling. Nobody has suggested doing anything, just to monitor the situation. I suppose I should be really grateful as I certainly did not expect to get to nearly 80. The wonders of modern drugs.Where are you based in the UK? Which hospital do you go to? Are you doing well?

[Lawand1]

goodness to hear you’re doing well! I’m in Hampshire and go to Oxford for my condition.

As my platelets were at 51 they needed to do the bone marrow biopsy yesterday. I guess so as if I need new drugs we start before they’re too low or if it’s the drug causing it they adjust the dosage before they’re too low he too low! I’ll find out May 8th.

I’m in that difficult holding period I guess. Stay well!