MDS on top of HIV
 

Folks -

Just joined after reading many posts. My recently-dxd husband Alan is a long-term HIV survivor (since 1992) and we haven't found much information/experience concerning folks who have both MDS and HIV.

Our consultation at Duke revealed that there aren't any MDS clinical trials which would accept HIV patients, and Alan isn't considered suitable for an SCT at this point. They'll reevaluate in early January after five courses of Vidaza and a second BMB, presuming we make it that far.

Do there happen to be other folks here dealing with both MDS and HIV? Thanks...

Hi Dave.

Congratulations to Alan on his long-term survival. I hope you can keep that streak going.

Vidaza would probably be the treatment of choice regardless of his HIV status. Do you know what MDS subtype he was diagnosed with?

Why isn't Alan considered suitable for a transplant? Having HIV can put patients at a higher risk if they undergo chemotherapy and radiation as part of transplant preparation, but this 2001 study of transplants for HIV-infected MDS patients was based on the theory that certain modifications to the standard transplant procedures would make transplants possible for these patients. However, no study results were posted. The modifications apparently proved to be successful, at least for lymphoma patients with HIV, according to this more recent article. The doctor who wrote that article is also familiar with MDS, so you might contact her if you want a second opinion about the transplant eligibility for your husband.

Hi Neil -

Thanks for your reply. Alan's subtype is RAEB-1. We have a few years' lab data, and the decline in platelets and neutrophils, especially, is pretty striking in recent months.

On his first day of Vidaza (Mon 8/7/17), his pre-injection HG was 8.2, neutrophils 0.5, and platelets 17. On the fourth day (Thu 8/10), they were 7.4, 0.4 and 7. He got platelets and Procrit that day, then two units of red cells the following day. On Mon 8/14 they were 11.4, 0.6 and 12, and he got more platelets. Today (Mon 8/17) they were 10.0, 0.6 and 17, and he received more platelets.

As the doctor at Duke's MDS COE explained, beyond the 35% first-year mortality from SCT are the sometimes-severe consequences of GVH. Alan cannot have steroids: the one time in recent years he was given a short course of them, his HIV broke through and his viral load went from undetectable to 6000. It has taken years to get it back to near its former level, and it is again starting to rise (but only to 60 so far).

Right now we're having labs twice weekly, and they'll support his levels as needed. He reports feeling like a clock which is running down, and has a quite sore belly as expected. Se we'll see what happens...

Dave,

Given Alan's RAEB-1 subtype, Vidaza treatment makes sense. Don't be surprised that his counts drop and fluctuate while you wait for a positive response. It's common for patients to need transfusions and Procrit to boost counts during this period, so try to keep an eye on overall progress and not worry excessively about daily blood counts. Easier said than done.

Yes, GVH is sometimes severe, but plenty of people (including my wife) have taken that risk when the other choices are equally risky. Not being able to take steroids is certainly a handicap on your treatment choices, so now I understand how HIV interferes with Alan's MDS treatment. Even at a top-notch center like Duke, it's hard to find physicians with expertise in the overlap of two diseases. If you have a chance to talk to multiple experts, don't be shy about doing so.