RDP's Journey with Chronic Myeloid Leukemia (CML)

My first rare cancer (desmoplastic small round cell tumor-DSRCT), which was a softball sized tumor in the upper abdomen was surgically removed. DSRCT has a 15% 5-year survival rate. Although there was no detectible remaining cancer, I received adjavent high dose chemotherapy. After 5 years there was still no sign of recurring cancer. Then, a year later I was diagnosed with CMML (Chronic Mylo-Monosytic Leukemia) which I am told was due to damage to the bone marrow from the HD Chemo. The only treatment was to do a bone marrow transplant, which I had in November, 2011. Now, 10 months later, with a few bumps and setbacks, the transplant seems to be working. Recovery from a BMT is long, with the main problem being Graft vs. Host Disease (GVHD), which is when the donor cells attack healthy organs (seeing them as foreign bodies. This can manifest in the skin (which I have had), the gut (which I have not had) and other organs (It attacked my liver). I am currently on immunosuppression drugs to minimize the effects of GVHD. Overall, having the two cancers has been a blessing in many ways. Yes, you read it right. It has strengthened my faith and trust in God, brought our family even closer together, given me a witnessing opportunity as to the mercy and grace only faith in Jesus Christ can give. I would be happy to share my journey in more detail.

After having my first cancer treatment (surgery and HD Chemotherapy) at Scripps Green hospital in San Diego, I was very comfortable with my healthcare team there. My insurance changed and, although the BMT would be covered, it would only be covered at University of California, San Diego (UCSD) or City of Hope in Los Angeles. Rather than fight the insurance company to stay with Scripps, I decided to save my energy for fighting my cancer. I chose to have the BMT at UCSD and it turned out to be a very good decision. The new team was highly competent and I have been receiving great care there.

The bone marrow transplant it self is very easy. Once a match is found, the transplant procedure is simply a 30-45 minute IV drip of the donor cells into my Hickman catheter. There is no surgery. The difficulty is in getting the fully ablative chemotherapy before the transplant which wipes out all of your existing stem cells, the 4+ weeks in the hospital and the long recovery time (9 to 12 months) with a suppressed immune system. I lost 60 pounds (mostly muscle), which after 9 months I am slowly gaining some back. I have neuropathy (which is nerve damage due to the chemo) which causes numbness and pain in my feet and lower legs. This is controllable by pain meds. But, hey, I am alive and it could have been a lot worse. I feel blessed to have had such a wonderful family, friends and healthcare team to get me through this and I am full of HOPE and faith in a full recovery. Thank you Lord!