|3 CANCERS BUT STILL DOING OK
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.
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