Sunday, April 6, 2014

Goodbye's been real! :)

Well. I sort of forgot to write about my (last) trip to the NIH that took place in February. Last trip? Why, yes...last trip.

So, back in January I heard that Dr. L from the NIH was leaving the NIH and heading to Memorial Sloan Kettering Cancer Center in NYC in May. He is the PI for the myeloma clinical trials at NIH and the reason I had been going there. I was scheduled for my third follow-up appointment for the Natural History Study of MGUS and Smoldering Myeloma at the end of February. The reason I joined the Natural History Study over a year ago was to 1. Contribute to important research. 2. Have an "annual second opinion" outside of DFCI with a MM team that had particular interest in the precursor myeloma states.

Well, that was the plan over a  year ago.... For the study, participants are followed annually for 5 years. So I figured I was good to go for the next 4 years. After I heard that Dr. L was leaving, I contacted the NIH and was told that there was a possibility that the study would remain open for enrolled participants but they would not be enrolling anyone new.

Unfortunately, I was recently told that the final decision has been to close the study. Apparently, most of the myeloma team is leaving the NIH, however the treatment trials will remain open. I'm not sure if this is all public knowledge or not, but I believe the cat is out of the bag at this point...

I did end up going to my appointment at the end of February at the NIH... I saw a research fellow named Dr. M who is actually now a part of the MD Anderson myeloma team. The trip was easy, uneventful...I flew for free and got $8.00 reimbursed for food. Who knew it would be my last trip? I wonder what will be done with the data they have collected from the study so far... What's going to happen to the 40-50ish vials of blood I donated? What about my bone marrow? Can I get it back? ;)

Guess it's on to "plan B" for my annual second opinion...