Oncologist Michael Snyderman will present his latest poster on his one-man trial to treat ME/CFS and chronic lymphocytic leukemia with HIV meds at 7 p.m., October 13 at MD Anderson Cancer Center in Houston, Texas. Snyderman, who is XMRV positive, has both ME/CFS and chronic lymphocytic leukemia (CLL), which is relatively common in ME/CFS patients. About 5 percent of ME/CFS patients get it, compared with .02 percent in the general population. Snyderman's taking AZT and raltegravir, two HIV drugs with efficacy against XMRV in test tube studies.
Snyderman continues to feel significantly more energetic than he was prior to initiating antiretroviral therapy. His elevated cytokine signature, particularly interleukin 8, improved on the cocktail and his XMRV viral load dropped. His CLL cells expressed XMRV. Snyderman, however, is concerned that attending the poster presentation may be discouraging for some patients because of the recent upturn in a CLL marker called trisomy 12, which is elevated in 25 percent of patients with CLL. Initially on the drugs, this marker plummeted.
Dr. Snyderman is a brave man to be sharing his experience publicly. I am grateful to him for sharing his experience.
ReplyDeletePatricia Carter
www.mecfsforums.com
Thanks for letting us know! I presume he's attending the Hematologic Malignancies Conference at the Hilton Americas there. I've told my nurse educator cousin in Houston.
ReplyDeleteLooks slippery, trying to get control of that CLL marker.
ReplyDeleteThanks, Dr. Snyderman, for publicizing your findings. Are you blogging this somewhere?
A non-blood relative of mine picked up a chronic leukemia and died of it a couple of years ago. He may have picked it up from our side of the family.
Best to you, Dr. Snyderman.
How is he able to measure his XMRV viral load? With DERSE cells? I think i read that like that it should be possible, not sure though, but apart from this i thought it's not possible at this moment.
ReplyDeleteInteresting. Thanks for this, Mindy.
ReplyDeleteIf Dr. Snyderman's "XMRV viral load dropped", I guess someone has an assay for viral load now. That's good news.
thanks for posting Mindy. Best wished to Dr. Snyderman. I'm sure we can all agree that we truly appreciate his candor and support.
ReplyDeletehopeful.
ReplyDeleteMy understanding is that his inflammatory markers for XMRV dropped. As far as I know, there is no quantitative assay yet for XMRV. That was why Dr. Cheney and Dr. Coffin were discouraging using antiretrovirals clinically at this point: there is no way to tell if clinical change is due to decrease in viral load or some other factor. Snyderman and Mikovits used cytokine markers for XMRV as an indirect or inferential measure to at least suggest the possibility of lowering viral load, even though this doesn't really prove that such is occurring.
ReplyDeleteJim K, There is a viral load test, but it's not commercially available yet. Dr. Snyderman is monitoring his XMRV viral load, as well as his cytokine markers.
ReplyDeleteMindy- great to know. I was working from what I recalled on the poster, but maybe that was on the poster and I missed it!
ReplyDelete...Here we describe DERSE cells, a new indicator cell system for the sensitive and rapid detection of replicating XMRV...
ReplyDelete( http://www.mecfsforums.com/wiki/Abstracts_from_1st_International_Workshop_on_XMRV#Abstract:_O_15_Assay_development_.26_Screening:_Development_of_a_GFP-indicator_cell_line_for_the_detection_of_XMRV )
many say that more than ARV's will be needed because of integrated provirus causing the trouble...and that any improvements on the ARV's will be temporary.
ReplyDeletecould this be what is happening with dr. snyderman? could the re-elevation of trisomy 12 be because of that?
Thanks Mindy. I think the 5% statistic comes from data on lymphoma not leukaemia, at least this is what I've seen quoted elsewhere. I'm a little bit confused as I feel some of the reports on this story have not made a clear distinction between the two cancers.
ReplyDeleteMindy,
ReplyDeleteDo you have a cite for the 5% CLL figure? I think it is really important to get an epidemiological study done on the extremely strong link between rare lymphomas and leukemias on the one hand and ME on the other. This would really get peoples' attention. Grufferman tried to do a study in the 80s but was denied funding by NIH. Any ideas how we could get cancer epidemiologists interested in this again?