ITP with CLL

[GeriGi]

Anyone else develop ITP with CLL?. My CLL doesn’t really need treating yet either. 🤷🏻‍♀️

[Marblemaze]

Hi GeriGi, yes for me ITP secondary to SLL. The SLL hasn’t needed treatment - it was low platelets from the ITP that triggered both diagnosis and the need for treatment. The ITP has been difficult to control so ended up, after 6 years of various ITP focussed regimes, getting V+O to treat the SLL to try to get the ITP under control. Platelets normalised (and I came off Romiplostim) about half way through a 12 month V+O regime. V+O finished in April ‘23 and so far so good, platelets in the normal range.

[GeriGi in reply to Marblemaze]

That’s good to know. Thank you for your reply. Did you lose your hair too?

[Marblemaze in reply to GeriGi]

No hair loss. Actually no noticeable side effects from V and just a bit of fatigue/fuzzy head from O, it was v straightforward for me (although I realise that won’t be the case for everyone).

[bkoffman CLL CURE Hero]

Terrible ITP with single digit platelets. The ITP, not my CLL drove my treatment decisions, Been sleeping for more that a dozen years now , but CLL is relapsing

[nvp815 in reply to bkoffman]

Hi Brian,

I am so sorry to hear your CLL is relapsing after your CAR-T trial. I followed your journey with much interest. I had CAR-T at UPenn in June and you are one of the reasons I wanted to pursue this phase 1 trial. Wishing you much good luck moving forward.

Nan

[cajunjeff in reply to bkoffman]

Brian, I have not seen any posts from you and coincidentally have been recently wondering how you were doing. I am very glad to see you posting, not so glad to learn your cll is relapsing. I think the plan for many of us is to hope treatment advances can keep pace and stay ahead of our cll. I know if anyone has another plan, its you. You inform us all with your cutting edge knowledge and I, for one, read your postings with great interest.

I had a different autoimmune disorder than ITP, mine was hemolytic anemia (AIHA). My AIHA appeared about the same time my cll worsened so for me it was a chicken or egg came first question as to what drove treatment for me. I do wonder if I might have been spared AIHA had I started treatment earlier.

I hope you will keep us updated on how you are doing. jeff

[bkoffman CLL CURE Hero in reply to cajunjeff]

Jeff,

Thanks. AIHA is more common than ITP. For me my ITP was a defining event. I will post when not zonked by meds

Brian

[Ghounds in reply to bkoffman]

I'm so sorry to hear of your relapse Dr Koffman. So disappointing for you after all this time.

[bkoffman CLL CURE Hero in reply to Ghounds]

I'll be fine.

[may04cll in reply to bkoffman]

Respect sir!

[GeriGi in reply to bkoffman]

I’m with you Brian! They’ll find something that works👍 G

[charliegirl]

Hi GeriGiI've also had ITP complicating my CLL although only 15 years post diagnosis and while on venetoclax. It started within a few weeks of my first dose of Pfizer vaccine in 2021 and venetoclax stopped straight away. Responded to high dose steroids. Then recurred within a couple of weeks of second dose vaccine - and vaccine reaction reported. This time it didn't respond as well to steroids.

I also have autoimmune haemolytic anaemia which flares up from time to time. By last autumn both cytopenias more troublesome and couldn't be weaned off steroids. My haematologist decided to restart venetoclax plus rituximab and I now have low normal platelets and haemoglobin.

My haematologist's supposition that getting control of the CLL back again would help the cytopenias was absolutely correct and I am finally about to come off steroids.

Good luck with your journey

Charlie Girl

[GeriGi in reply to charliegirl]

Charlie Girl: I appreciate your response and very happy to hear something’s worked for you. I know I have a journey in front of me. Just anxious about it. My specialist has run some testing that I am not familiar with, but I think he wants to dig deeper into what’s going on because my marrow is not indicating treatment so much.

The scary thing he kind of suggested before these tests is RCD. My other specialist in San Diego says splenectomy. I’ll see him in a few days and now that platelets have bottomed out I’ll see if he still says splenectomy. He said it was a reasonable choice at the time. Well my platelets were 100 I didn’t want to mess with it. That was before actual drop and ITP diagnosis 5 months ago. I’ve had no necessary vaccines for splenectomy and not sure if RCD too toxic. I’m on dex now and getting my last infusion of rituxan which seems to be 1st protocol. Then I will have to make a decision I’m sure. Just vented. Any options appreciated. I have all the “good” markers of CLL and no treatment except one round of Ritixan 3 years ago and now. 17 years CLL and developed AIHA, PRCA and ITP. whew

[ABP45UK]

I have had my first ITP 'episode' where platelets suddenly disappeared to less than three in June 2023 ...following a course of Flucloxacillin antibiotics for minor toenail infection. Treated with single dose iv immunoglobulin and started on high dose 80 mg a day oral steroids and ironically never felt better and more energized!( Not sure if it was Igg which did bring inflammation marker CRP down o normal range for first time in 18 months or the steroids!). Gradually coming down off steroids....giving me heartburn despite taking stomach lining medication...now on 40 mg a day. Awaiting phone consultation appointment today as currently struggling with infection markers raised. Suspect my next steps will be heading for second line treatment V &R (having had FCR in 2018).

My platelets quickly bounced back up to over 100 so I hope yours do too.

[GeriGi in reply to ABP45UK]

Thank you