Next week my husband and I are headed to Bethesda, Maryland. Road trip! Meh, unfortunately this is not a super “fun” road trip, per se. I am going to the National Institute of Health / National Cancer Institute to enroll in the Natural History Study of Monoclonal Gammopathy of Undetermined Significance (MGUS) and Smoldering Myeloma (SMM).
This is a “screening” visit to see if I am eligible for this particular research study. During the two days spent at the NIH there is kind of a lot going on. I sent all my test results from the last 3.5 years at Dana-Farber as a first step, but they do all of their own testing there as well. During the visit I will have…
Blood tests – to evaluate blood counts, liver and kidney function, presence of infectious diseases, presence of specific protein markers, and presences of abnormalities in a variety of genes.
Urine tests – to assess the presence of abnormal proteins (NOT a 24 hour urine. Thank you, Lord.)
Bone marrow aspiration and biopsy – my third BMB since July. Ouch, ouch, ouch…
Skeletal survey – my second, last one was in August of 2009
Electrocardiogram (EKG) – to evaluate heart rate and rhythm by measuring electrical impulses from the heart through electrodes that are placed on the skin. Never had one before, should be interesting!
I will also meet with Dr. OL, Dr. MR, and/or other members of the myeloma team.
I have to say, I truly can’t think of a better way to spend my February vacation week! HA. Not. In all seriousness, I hope it will be a good experience and I will get the opportunity to hear these doctors’ opinions of my current status and their recommendations for next steps moving forward. I am also looking forward to seeing the results of this third bone marrow biopsy. I wonder if I will still have 10% plasma cells. Or maybe they will hit a spot with a lower concentration! I guess, higher result is a possibility too, but I hope that won’t be the case. I’m also interested to see what my m-spike will be since I am not going back to Dana-Farber until April.
If all goes well and I am accepted into the study – I’m assuming I will be – I will return to NIH in 6 months and then annually for 5 years or until the myeloma becomes active, which would then disqualify me from participating. This study is to investigate risk factors related to the progression of MGUS and smoldering myeloma to multiple myeloma, to help better understand the disease, and to develop tests that may be useful as prognostic factors. I am very excited to contribute.
J and I are trying to find fun things to do in the Bethesda/DC area to turn this medically driven trip into a little mini-vacation. We’ve never been to Bethesda and we’re not sure what’s around there, but hopefully the trip will be fun! Minus the bone marrow biopsy, of course. :)