Stem Cell Transplant
My allogeneic transplant was performed at the Cleveland Clinic (CCF). CCF has a library of information and provide a comprehensive transplant notebook to their patients. Big points:
- Find a place to stay (patient and caregiver). I was in the transplant ward for 23 days and had to remain within 1 hour of the hospital for 100 days post-transplant.
- Don’t Dr. Google for information. Go to knowledgeable and reliable sites (e.g., Mayo Clinic, Cleveland Clinic, Cancer Societies).
- The most challenging aspects of the transplant were nausea control, mouth sores (your WBC goes to zero and the bacteria go wild – I didn’t eat for seven days and needed a morphine drip), an unknown infection that gave me a fever and nausea that resulted in an ER visit and re-admittance to the BMT Ward, and GI issues that required an endoscopy and colonoscopy.
- Get out of bed and keep moving.
- I developed a skin rash on my back and chest that was diagnosed as acute graft vs. host disease, but cleared up with steroid cream after approximately three weeks.
- Nine months after my transplant, I developed chronic graft vs. host disease (cGvHD) where my new stem cells were attacking my liver, lips, and salivary glands. Lots of Prednisone for over a year with over a dozen manageable side affects. Unfortunately, tapering off of the Prednisone resulted in a return of the cGvHD, so I will be starting a new drug, Ibrutinib.
- Be VERY careful to prevent infections. There are restrictions on diet and Mother Nature can hammer you (lots of bacteria, fungi, and organisms in the soil). I was doing great, but didn’t wear an N95 mask leveling and re-seeding a section of my backyard and ended up with pneumonia and a Nocardia infection. Five days in the hospital and 12 months of large doses of antibiotics were the result of letting my guard down.
- Your caregiver is your best asset. Find someone you trust. Their love and supervision will get you through. My wife’s job was way harder than my challenges and I wouldn’t be here without her love and care.
Good luck and God bless to all. You can beat cancer!