Natural History Study – MGUS & SMM

Speaking of second opinions….

I learned about the Natural History Study of Monoclonal Gammopathy of Undetermined Significance  and Smoldering Myeloma a couple weeks ago. In this study/clinical trial, researchers from the National Cancer Institute (NCI) are identifying causes of transformation from MGUS and SMM to multiple myeloma. The study will enroll patients with a diagnosis of MGUS or SMM with the intention of tracking the progression of the disease. From what I understand, patients go for an initial visit, then after 6 months, then annually for up to five years or until the myeloma becomes active. The actual clinical trial listing can be found here.

From what I have read on various myeloma forums, enrolling in the study gives patients a thorough workup by a team of myeloma specialists. In my case, this could be a way to get a “free” second opinion. Plus, of course, to some degree contribute to society assuming that this study will help researchers better understand myeloma and it’s progression. Participants even get reimbursed for some travel expenses.

After learning about this study, I emailed the two addresses listed  on the website. I heard back from a research nurse who said that I should fax my records and then they would get back to me. Then, a few days later I got an email from the lead doctor – Dr. L – who put me in touch with another doctor named Dr. MR.

Dr. MR actually set up a time to call me and speak on the phone which was really nice. He was able to answer some of my questions and give me more information about the Natural History Study. He did say that their philosphy is different than Dana-Farber and going to the NIH/NCI for a second opinion would definitely be a good choice for me. Not entirely sure how their philosophies differ, but whatever. He said getting a different second opinion would be more beneficial to me than getting a second opinion that is the same, which would probably be what I would get from Mayo. Hmmm. I guess that makes sense. Although, having conflicting opinions would be a little bit more confusing! Getting a second opinion that is the same would be somewhat reassuring. Lord knows I need some reassurance. :)

So far everyone at the NCI/NIH has been very nice and helpful. I told Dr. MR that I was getting a second biopsy in December. He thought I should go to the NIC for my second biopsy because I would get all this additional testing that I haven’t had done. I said I would think about it, but then later emailed him and said that I was going to stick with my follow-up biopsy at Dana and I hoped to go down for the Natural History Study soon after. THEN, I would have the results from the two biopsies at Dana as well as Dr. PR’s opinion of my situation to compare with the doctors at the NCI. Going to the to Maryland to enroll in this study would be a good chance to get a second opinion AND like previously stated, contribute to science. :)  Right? Right.

I am hoping to go to the NCI in January or February. Nailing down an actual day and time has been a little bit more difficult. According to Dr. MR I am “on his list” to come in January or February but he will be in touch as the dates get closer. Hmmm.

Still go to the Mayo Clinic for a *gasp* third opinion? We’ll see.