Thanks for the encouragement!
When I was first diagnosed, I had a consult with the transplant surgeons at Johns Hopkins (JH). My oncologist worked with the surgeon to develop my treatment plan which did not include a stem cell transplant at the time. After eight cycles, I have not received active treatment for 1 year 10 months. I was able to achieve a very good partial response to chemo and the cancer was undetected until January 2012. My last two follow up appointments showed small increases in my M Spike. The issue is when to restart treatment as chemo has side effects, so quality of life must be weighed. My oncologist does not believe the small increases are worth the side effects of chemo. He will consult with JH to see what and when my treatment should start again to include a stem cell transplant.
I am on MMRF and Leukemia and Lymphoma Society and ACOR list so I receive tons of information on clinical trials, therapies, webinars, support etc. There is a Life with Cancer center near me. The MM group meets once a month. I have attended once about a year ago (meetings are during work hours) and it was very informative. The guest speaker was a Myeloma transplant surgeon from JH and he was surprised that I was not on maintenance. My doctor’s position is to allow the body to recover from all the toxins once you reach remission. He believes that the clinical trials and new treatment options may provide for a better cure, so when a relapse occurs it may be a better treatment option available then before. I tend to agree with him. Although sometime think about whether my lack of maintenance will have a long term impact. Beside the pain from arthritis in my lumbar spine (I believe chemo caused it), the occasional shooting pain from neuropathy, and fatigue, I feel okay. However, it took over 1 year to get to this point. I will see my doctor again this month.