Over Expressed CD38

[SantaZia]

My Fish results found a CD 38 (partial) I've read the CD38 indicates a more aggressive disease. Does anyone have any knowledge or literature on this?

[lankisterguy Volunteer]

Hi SantaZia,-

There are many markers the research experts find that indicate a more or less aggressive version of CLL. IMO (no medical training) being UnMutated is more significant of aggressive disease than being Mutated. CD-38 results above 30% usually predict being UnMutated.

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Since you are in the USA, your hematologist has likely run a FISH test and IGHV (IGVH) mutation test on your blood, and those are more significant than your CD-38 results.

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You can see a similar discussion from a few minutes ago here: healthunlocked.com/cllsuppo...

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You can also read more here in the box on this page labeled :

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Bottom line is that more aggressive CLL disease likely means shorter time before and between treatments, but with all the modern targeted treatments there is very little other differences. Avoiding infections, maintaining a healthy lifestyle, and regular exercise will likely extend your life to match people without CLL.

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Len

[SantaZia in reply to lankisterguy]

Len thanks that helps

[Teddo in reply to SantaZia]

I am responding without having yet read the links Len suggested. In my recent, initial visit to a Cll expert she said CD38 and Zap70 were older surrogates for estimating mutational status. Only estimated b/c not all CD38 findings equals non mutated status. As I recall 65-70% of those who are CD38 are non mutated, the others are mutated. In my case I am Cd38+ ( 9% at diagnosis and 32% four years later) and IVGH mutated. She said mutational status "trumps" CD38 with regard to disease progression, thus she places far more emphasis on mutational status.

[SantaZia in reply to Teddo]

I agree. I was placed in watch and wait about 2-3 stage. I had a negative value for the mutational status and a positive value for the p53. I have an enlarged spleen, but very mildly so. There is evidence of a positive Coombs test consistent with CLL, which may be causing, my hemoglobin and platelets to be a little bit low, although not critically low, according to my hematologist/oncologist. One book that I picked up, Chronic Leukemias and Lymphomas, edited by Gary Schiller, has an excellent chapter on CLL by J. Cavenagh and A. Lister. It is a fascinating disease with a lot of variants, nuances, and autoimmune deficiencies, like AIHA anemia which I could also could have Haptoglobin 9/9/21- 39; Haptoglobin 10/22.21-18. I think if I can make it long enough I will come to understand the disease. This is a wonderful site with some kind and knowledge folks. Thank you!

[MyCLLJourney in reply to SantaZia]

I recently was diagnosed with "CLL related encephalitis". I had a central nervous system issue that caused it as well. I had treatment for the sarcoma carcinoma of the bladder. I had a follow up on the 26th, but the lab work for the spinal tap was not complete. I still have extreme dizziness and a fair amount of vomiting. I do have meds to take, but it doesn't seem to help much. I hope the bladder cancer was caught early enough that it won't reoccur again.

[SantaZia in reply to MyCLLJourney]

My goodness CLL related encephalitis. I am so sorry that this disease has caused you this trouble. I believe you were trying to reply to the person that had bladder cancer. I will you the very best, I hope recovery comes quickly. Andy