Falling platelet counts after achieving Undetectable Minimal Residual Diseaese

[DinosaurDad]

Hello folks

I completed a course of Venetoclax & Obinituzumab (Gazyva) last March, and happily achieved UMRD (undetectable minimal residual disease). I'm part of a clinical trial, which stopped treatment once I reached UMRD (with a minimum of 6-9 months of treatment); I was treated for 9 months.

Have been doing quite well since then.

One strange thing: my platelets went quite low as I was in disease progression, then recovered to the 135-145 range while on treatment. However, my most recent blood tests show platelets going from 143 to 117 and now 99. My doc is monitoring.

Anyone have the same experience? Of note, I've had a history of relatively low platelets for a number of years, even before CLL diagnosis. I'm just wondering why this is happening.

Thanks for any insights.

[DinosaurDad]

Thanks for responding, Looks like I may have Immune Thrombocytopenic Purpura...basically an impairment of ability to replenish platelets, related to my CLL. I spoke to the doc this morning, she wants to monitor but unless it gets much lower, no specific actions right now. I guess it's just a reminder that while I'm UMRD, there's still CLL at some low level in my system.

[SofiaDeo in reply to DinosaurDad]

IDK if this drug veltuzumab is still available, it got Orphan Drug status for ITP. I was in the clinical trial for SC use in CLL back in 2011. It halted but didn't regress my CLL. I got B symptom relief, so was happy I did the trial even though it failed to regress.

Apparently it has fewer SE's than rituximab for ITP. FWIW, rituximab also has a SC dosage form you may want to discuss if your doc wants to treat the ITP. I personally would consider rituximab over steroids; might as well shoot for some CLL killing effects instead of just purely immune suppression.

ashpublications.org/blood/a...

[DinosaurDad in reply to SofiaDeo]

Thanks for responding. Seems like steroids are the first thing they try, I've heard of injections (Romiplostim) also are used. I'm hoping that things stabilize and I don't need to be treated.

[SofiaDeo]

I too have had platelets running around 100 since diagnosis. Even in my close to 5 year remission. Intetestingly, they briefly popped up to normal after stopping the venetoclax, but are now trending down again.

IMO it's just how my CLL critter affected my bone marrow. Something got damaged early in the disease, and hasn't recovered, uMRD or not.

[DinosaurDad in reply to SofiaDeo]

Thanks for your response. I think I'm in the same boat. So long as it doesn't fall too low, shouldn't be a problem.

[IRN83]

I was on V&O twice. I only got to uMRD after taking it the first time and it lasted less than 2 years. I never achieved uMRD after my second treatment of V&O and had to stop early. My platelet count rarely gets above 100 and has been as low as 30. Mine routinely is in the 50-70 range. I know this isn’t encouraging but I have been doing fine with a low platelet count for many many years.

[Justasheet1 in reply to IRN83]

IRN,

Actually, you saying that you have been doing fine even with counts in the 50’s is encouraging.

Wishing you continued good health 🍻

Jeff

[DinosaurDad in reply to IRN83]

Thanks for your insights.

[Skyshark]

I believe this is the trial you are on :

ash.confex.com/ash/2023/web...

Congrats on reaching u-MRD5 in PB at cycle 7/9. About 60% on first time VenO can expect to achieve this.

Use of any mAb may mean you are off the trial and preclude the Venetoclax re-treatment that the trial design allows for those that stop at end of cycle 10.

[DinosaurDad in reply to Skyshark]

Actually this is it: mskcc.org/cancer-care/clini...