W&W 4-1/2 years. I feel perfectly fine, good energy no fatigue. Today my hematologist told me I need 4-weeks of rituxan transfusions due to ITP (low platelets) following a virus infection which resulted in a Platelet count of 1. (Hospitalized Oct 7th for 9 days, given platelets and IGIV transfusions. Discharged with 10 platelets and given high dose prednisone (100mg). Now down to 20mg/day.)
Platelets were 77 on a follow up 2 weeks ago, but today 43. WBC however went from 60+ to 40+ to 19 today in the course of 3 weeks. He's not considering the Rituxan as a response to CLL progression but specifically for the platelet situation. He's concerned about long-term effects of Prednisone so wants to get me off sooner than later (I agree).
Any thoughts?
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jawdfs
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Thanks for your reply. Since my WCB is back down to 19K from 60K, 3 weeks ago, and about the same as it was in 2017 (17), I agree with my Hematologist that my CLL is not really progressing. I'm getting Dr. Lamanna to weigh in as well -she's going to look at my bone marrow biopsy soon.
Thank you Neil - this article is very helpful. My primary hematologist, Kenneth Hymes at NYU Langhone, has already scheduled my four Rituxan treatments beginning next Tuesday which is a little disturbing to me since I said I wanted to give it a few days to think about things and he asked me to speak with him on Monday. I'm hoping to speak to Dr. Lamanna before then. Thank you again for all your dedication to our community
Rituxan is used as a treatment for ITP in people who both do and don't have CLL.
I understand it's mostly pretty effective but the results may not be long lasting and chronic ITP can be difficult to address.
I had ITP as the presenting feature of my CLL with a platelet count of 23 but I was fortunate that it resolved without any treatment after about 5 weeks. Yours sounds more persistent
This paper is from 2019 and is a bit more up to date than Neil's reference
Good that you will have Dr. Lamanna looking at your case. Predict., IVIG, and Rituxan are all used to treat ITP these days. We are all different and respond to different treatments. I hope that this is the right one for you!
Wow- that’s almost exactly what happened to me/ I had a strange outbreak on my nostril and Dermatilogist said it was shingles. Given valtrex and on the ninth and last day woke up with those same blood blisters in my mouth like you described. 1 platelet! Let’s stay in touch. I’m hoping to speak to Lamanna soon doing a lot of quiet meditation work as I see that stress is always a precursor triggering these crazy infections that it seems we both get. Sending good thoughts and will keep you posted.
Hi. My CLL presented with ITP and I too had severe episodes with bruises and petechiae and blood blisters in my mouth with a platelet level of 1. We must form a club! I was treated on various occasions with high doses of steroids and eventually, this was in 2005 before the advent of rituximab, a splenectomy which was initially very successful. However the CLL progressed and in 2012 I had FCR and, touch wood, am still in remission with platelets hovering around 140.
I took a course of Gazyva, along with I think 9 months of prednisone starting at 100 mg when hospitalized and weaning down slowly to zero. Also the first treatment of Rituxun had no long term positive effect. It was the Gazyva and lots of energy work and stress reduction that did the trick. Platelets have been in 150 range ever since. I say remission in my book. No CLL signs in blood work for almost 3 years.
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