I found a discussion board account from an individual with CMML who’s going through the same procedure that Beth is expected to go through. The only difference is, this individual has a sibling donor. Here are a few snippets:
June 19:I’m a 60 year old sales professional male getting annual physicals with blood tests. I was diagnosed with CMML in Feb. 2011. … I went to the best local oncologist I could find. The oncologist is affiliated with Johns-Hopkins, Baltimore, MD. My initial consultation with a transplant team at J-H was the end of March.March-April May were transfusions of blood and plateletts as needed determined by my weekly blood draws at the oncologist. I also received 2 courses of Vidaza in preparation for the transplant.
I was admitted to Johns-Hopkins on 6/13. On 6/15 started a 5 day run of Busulfan. Today 6/19 starts a 2 day run of Cytoxan. On 6/21 is the Bone Marrow Transplant from my donor brother. Then, 2 more days of Cytoxan. I start down the road to recovery and hopefully cured.
So from diagnosis to transplant was about four months. Keep in mind, this is Johns-Hopkins, not West Penn.
July 8:The BMT was uneventful and sort of just like getting another few units of blood. I rested for 2 days and then received 2 more days of Cytoxan. During the last day of Cytoxan you start to walk through the fires of hell. They start initiating bags of antibiotics, anti-fungal anti-microbials. I keep getting low grade fevers. They tell me it’s normal. Not all experience the same side effects. These drugs hit everyone differently.
July 8: I’m currently on DAY 17 after BMT. I have no immune system so I’m on a specialized floor with air pressure 2 lb. higher than ambient. Theory is, when a door to the outside is opened air rushes out preventing the entry of germs. I constantly feel like I have the flu. Just have to deal with it until around July 12. That’s the day projected to be the day my own marrow will be producing healthy cells.
July 19: The chemo side effects are all they say they are. Mucositis (the painful inflammation and ulceration of the mucous membranes lining the digestive tract), loose bowl, loss of hair, appetite & taste. You feel like you got run over by a bus! Have to stay positive since they only last about 2 weeks. Then the miracle begins…Day 18 after transplant. Blood counts start appearing 50 here, 110 there and keep growing. Not by leaps & bounds but by 20-30 points. Several transfusions of red cells and platelets. A little rash here & there (a little GVHD [graft-vs-host disease] is a good thing). Hygiene is most important. … It is now day 28 and my counts are high enough for discharge today. Now begins living in temporary housing across the street with daily clinic visits for blood draw, treating a fever, anything needed by IV. This will go on for 30-45 days. Then I’m released to home with restrictions. Fatigue is always with you. I’ve learned how to pace myself.
