Transplant Appointments Have Started

The next day after my last post I got a call for my nurse up at the SCCA, Toni. She asked me to come in the next day for an appointment with Dr. Shustov. This is not a good sign! Usually appointments with him are booked weeks in advance. Well, it ended up that he wanted to tell me that the transplant board had discussed my case and the consensus is that I need a full transplant. This means 3 days of full body radiation and 3 days of heavy duty chemo, leaving me with no blood cells-completely wiping out the marrow. The 8th day is the "rescue" when they infuse the donated stem cells. Then it takes 7-20 days for the new immune system to start working.

On June 21 I had my last appointment with my oncologist Dr. Shustov for the next 100 days. He again let me know that the choice is up to me and that he is leaning slightly towards the stem cell transplant. I can stay on the maintenance therapy for 2 years and worry about the 65-75% chance that the leukemia will come back. If it does relapse it can be harder to get into remission and I will have to have a stem cell transplant at that time. If I have the stem cell transplant now I will decrease my chance of relapse to 20-45%. I have a fully matched donor at this time.

On June 22nd, I started my first day of appointments for the stem cell transplant. I started out in the lab where they drew tons of little viles for every test imaginable. Then I got a physical with the Physicians assistant. Next, I met with the nurse. She went over the schedule for the rest of the week, my medications list, and the schedule for the transplant. The plan is to start the full body radiation on July 10th, in patient chemotherapy on July 13th, and stem cell transplant on July 16th.

On June 23rd, I started with an meeting with the finance lady. I found out that if we did not have insurance that we would have to put 379,000 dollars down before starting the transplant. I hope everyone out there has insurance or gets it soon! Then it was off to get my EKG. My heart is beating fine. Next was my meeting with the transplant doctor and nurse. I brought Travis and my Aunt to soak up the information with me. He basically went over all the risks and side effects. Chances of treatment related mortality is 15-20%. The chances of GVHD (graft versus host disease) is up to 70%. This includes all GVHD from mild to severe and acute to chronic. Infertility and menopause if pretty much guaranteed. Some hard decisions lay ahead. I pray everyday for guidance.

Today started out with a blood draw and then a platelet infusion. My platelet number is 24 today and I need to be above 50 for a lumbar puncture which is scheduled for later in the day. Normal platelet numbers are 150-300. Luckily after the platelet infusion I was 52. Then I went for another pulmonary function test. I did much better this time. I was normal for my age group. The last pulmonary function test was a couple weeks after being intubated and I had just gotten off home oxygen the day before. Next, I was off to get my bone marrow biopsy and lumbar puncture/chemo injection. Lets just say my back is sore right now. I did get my Fentanyl lollipop and Ativan beforehand so I didn't mind the procedures much. The bone marrow biopsy is done on your back in one of the hip bones by a nurse. The LP is done on your spine by a physicians assistant. They also took a sample of bone.