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KS,CASTLEMANS,PEL - 4 yrs remission.
Apr 12, 2014

Hello I used to write to you all the time when initially diagnosed with HIV and always found you a great support.

Diagnosed HIV 2006 cd4 130 hivvl >100,000. Had developed KS. Diagnosed Multi Centric Castlemans 2008 CD4 400 HIVVL <50 CRP 15 HHV8VL 1600 Treated with Retuximab twice. Stabalised but no remission. Diagnosed PEL 2009 CD4 450 HIVVL <50 CRP 12 HHV8VL 1200 High dose Valgancilovir for prior to Chemo - CHOP - 6 CYCLES Remission Jan 2010. CD4 500 HIVVL <50 CRP <5 HHV8VL UNDECT.

Still in remission CD4 590 HIVVL <20 CRP <5

My question is this - I have been two conflicting prognosis. One told me that the Castlemans will return as "it always does" Another that it is unlikely to return as they believe ( and excuse my simplisitic language) that following the aggressive treatment my immune has finally "kicked" in and is now recognising the HHV8 and is keeping it in check.And will continue to do so.

The problem I have is that in my area - no other patient has had these 3 malignancies and I get the impression there is a lot of head stratching going on.

Any experience you have had with patients in this position would be greatly appreciated.

Thank you again for the work you do.

Response from Dr. Young

Hello and thanks for posting.

It's good to hear that you've had such an excellent response to the various therapies. Castleman's disease is indeed uncommon put down more frequently among people living with HIV. By contrast, Kaposi's sarcoma was very common and almost always responds to just antiretroviral therapy alonethis means that improving immune function is all that is required to control this cancer.

The reality is that there are very few Studies that describe the next history of Castleman's disease among people who have had immune system recovery. The fact that you're HHV8 viral load is undetectable of course is an excellent thing and suggests that your me and system is doing persuasive the job that it should and may in fact, control the Castleman's disease and PEL at this point forward.

So I tend to agree with the second doctor more than the first. Because of the uncertainties in the statement I think it is reasonable to continue to have close clinical and laboratory monitoring.

I hope this brief conversation is helpful, BY


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