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Apr 26, 2010

Hi I ve been told that im an unusual case. I was diagnosed in 2006 VL huge CD4 126. Since then I started HAART CD4 390 VL <20. Over the last 4 years I ve had KS - which went with HAART alone. Castlemans which went with Retuximab. Last year I was diagnosed with PEL - had 6 CHOP and remission for 15 weeks now. During that entire time my HHV8 levels were elevated. My last 2 HHV8 tests have shown me to be HHV8 negative! I know HHV8 is related to the 3 "cancers" I ve had so how am now HHV8 NEG. My consultants - Oncology and HIV say that it is possible that finally that part of my immune system has kicked in and has started to do its job. Is that possible/likely? If so does that mean that possibly these conditions wont return. I ve also been told by Prof Mark Bower HIV ONCOLOGIST that if the PEL does not return within 12 months its 99% certain it never will. Any comments/.advice on my case much appreciated. My CRP levels are 5 - lowest they ever been and LDH <180. Any other bloods I should be looking at?


PS To anyone out there going through a similar hard time,. keep the faith, follow the advice from clinicians and keep healthy. It can work, you can come through dire situations.

Response from Dr. McGowan

Thank you for your post.

Your case is very encouraging to many. I know that each of these cancers ahas been a great challenge for you and required great fortitude to tackle. I am so glad to hear that you are doing well.

Yes, having suppressed HHV-8 is a great sign. Like all herpes viruses we cannot eliminate them, but with a strong immune system it is very unlikely that you would have a relpase of these tumors. I have had a number of patients who have had long-term (several years) without any relapse with Castleman's once their immune systems have recovered as yours has. I do think that this willl be the case for you.

Thank you for your inspiring story.

Best, Joe

Testing question
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