[terryl1]

Re: Newly Discovered multiple myeloma/stage/second opinion q

by terryl1 on Fri Mar 01, 2013 7:27 am

Hi Jen B., After my diagnosis, I went to the NIH in Bethesda, MD. I also went to UPenn which has an excellent and large myeloma dept. at the Abrahamson Cancer Center. I was monitored as a smolderer till April, 2012, when I progressed to active myeloma. I decided to be treated at the NIH in a cutting edge CRD (Carfilzomib/rev/dex) trial that does not involve a SCT. So far, so good and I feel quite, well, normal!

[JBarnes]

Re: Newly Discovered multiple myeloma/stage/second opinion q

by JBarnes on Mon Mar 11, 2013 1:04 pm

One thing I learned is that the skeletal survey does not really show the bone lesions very well. My survey indicated that I had no lesions but a subsequent MRI showed I had many lesions in my hip area. Knowing what I know now I would have insisted on a MRI of the back and pelvis where many of these lesions are located. Once the MRI results were analyzed I got a couple weeks of radiation which cleared up the lesions. Better to get these lesions (if you have them) corrected as early as possible before you potentially get permanent bone damage. Jerry.