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Any Treatment Options? CLL & ITP

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15 years 5 months ago #4119 by Bub
Any Treatment Options? CLL & ITP was created by Bub
My dad has CLL and ITP. He is in the hospital battling bactermia, a low platelet count and CLL. His platelets were at 110 last Tuesday and now he is at 6. They've transfused 6 packs of platelets in the last 12 hours with no movement. They've tried IVIG, steroids and NPlate. His platelets fell to 4, moved to 8 and fell back to 6. Rituxin worked in the past for him but during his last use, it did nothing. His doctor said that once it stops working it will never work again. (Does anyone know anything about this?) Any treatment suggestions to boost the platet count? Thanks for all your help!!
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15 years 5 months ago #4120 by Bunnie
Replied by Bunnie on topic Re:Any Treatment Options? CLL & ITP
I assume that by CLL your referring to Chronic lymphocytic leukemia. Not being a medical professional, I'm hard pressed to provide any real great advice. Since thrombocytomia (low platelets) is frequently a complication of the CLL, do you go after the immune system(IVIG,steroid) or the bone marrow (Nplate). Guess thats why the docs get the big bucks to make the tough calls. Add to that the fact that if he has bacteria in the blood, many antibiotics play havoc with platelet counts for most of us. If they can overcome that and back down on the antibiotics, it's possible he could bounce back on his own.

Best thoughts and wishes go out to your dad and yourself.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
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15 years 5 months ago #4131 by Bub
Replied by Bub on topic Re:Any Treatment Options? CLL & ITP
Thanks for the well wishes. CLL is chronic lymphocytic leukeumia. The docs say they are at a loss right now. They are trying IVIG, steroids, NPlate and transfusions all in combination. Thanks for the information on the antibiotics. I didn't realize that they too cause platelets too drop. They keep rotating him on different antibiotics and he's currently on straight penicillian, in increasing doses. I hadn't thought about the antibiotics contributing to the problem.

Thanks for the advice and your well wishes!
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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15 years 5 months ago #4145 by karenr
Replied by karenr on topic Re:Any Treatment Options? CLL & ITP
When was your dad diagnosed with CLL? When with ITP? Where is he getting his medical care?
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15 years 5 months ago #4150 by Bub
Replied by Bub on topic Re:Any Treatment Options? CLL & ITP
My dad was diagnosed with ITP and CLL in 2002. They first spotted the ITP in bloodwork and several months later they diagnosed CLL (the pathology is very odd according to the doctor - at first, they thought he had non-Hodgkin's lymphoma). He is treating in Pittsburgh. Unfortunately, the doctor seeing him in the hospital is not his regular doctor. I talked to my dad this morning and he said he had night sweats all night (presumably related to the CLL). We are waiting this morning for the latest platelet count and the results of the full body CT scan and bone marrow done last night.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #4165 by Sandi
Replied by Sandi on topic Re:Any Treatment Options? CLL & ITP
Good luck, Bub. We can't offer much advice regarding CLL and ITP; two different things. I hope he improves soon.

Where is he in Pittsburgh? I'm from this area.
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15 years 5 months ago #4176 by Bub
Replied by Bub on topic Re:Any Treatment Options? CLL & ITP
He's at Shadyside Hospital. Thanks for the well wishes. We had good news today. Platelets are up to 12!! As I see it, that's a 100% improvement. His heartrate fell to 32 last night, but it may have been a side effect of the IVIG.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 10 months ago #9506 by Sandi
Replied by Sandi on topic Re:Any Treatment Options? CLL & ITP
bloodjournal.hematologylibrary.org/cgi/content/abstract/blood-2010-05-286500v1?ct
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