I was asked in a post to share my stem cell transplant experience, so here we go
I would like to start with saying I am now 29 days post transplant and doing quite well.
I started with a one-night stay in the hospital and received BCNU (carmustine). Two days later, as an outpatient, I received the high-dose melphalan, at which time I chewed on ice the entire time. For some reason, they gave me ice with water, and I almost made myself sick just from drinking and chewing so much. I would recommend asking for ice only. I was successful in not getting mouth sores but still ended up getting mucositis.
Two days later, as an outpatient, I received my stem cells. During the harvest, they were only able to collect 4.2 million cells. They used 2.9 million for the transplant and said, if necessary, the 1.4 million would be used if I didn't engraft. 6 days post transplant, I started Neupogen injections and engrafted on day 9.
3 days post transplant, the nausea,vomiting and diarrhea started, not uncontrollably, but it started and continued for the next couple weeks. I was hooked up to mobile hydration through my Hickman, which I believe really helped as I didn't feel like drinking or eating. I received the hydration until I engrafted.
About 11 days post transplant, I started running a low grade fever. They finally removed my Hickman on day 16, and the fever subsided.
I was about 12 days out and hadn't lost my hair. I really had high hopes that I wouldn't lose it, but then it started falling out and didn't stop. I really dreaded losing my hair, but I know it will grow back.
We had to stay in a local motel with a kitchenette since we live so far from the treatment facility. I stayed in bed for almost 19 days, other than the daily visits to the treatment facility for lab draws. I walked to the car but didn't have much energy for anything else. Luckily, we had a bucket in the car, as I used it more then once due to the vomiting.
I was released to go home 19 days post transplant. I am now riding my stationary bicycle daily and walking. My energy levels have improved, and I believe it is because I am not just laying around feeling sorry for myself.
Now I wait for 90 days post transplant to find out if it was successful.
Best regards,
Rhonda
