August 15, 2000 - Day 159
Hi Everyone!
It's been quite a while since our last update. That's good. It means there's nothing exciting happening, and Dave is doing well. He's feeling better all the time. The peaks and valleys of his early recovery have leveled out, so his ups and downs aren't extreme anymore.
We wanted to catch you all up on what's going on. We've had a couple of appointments that have been cancelled, so it will be almost 8 weeks between visits to Boston. This message gets a little involved (or verbose, as Dave would say!), so bear with me.
We're scheduled to go down for an appointment on August 28th. During this visit, Dave will have a bone marrow biopsy so the doctor can take a look at his marrow and see if there's any sign of leukemia. This was supposed to happen on the 7th, then the 14th, but now it's the 28th. The reason is was scheduled for earlier in the month is that Jon was to come up on the 28th to have blood drawn to be given to Dave as a transfusion, and the doctor (and we) wanted the results of the biopsy before the transfusion.
As you may remember, this transfusion is part two of the whole process. When Dave had the original transplant, it was T-cell depleted. The cells that could cause graft vs. host (GVH) were removed, allowing Dave to recover more quickly with fewer medications (and less risk to his health). The downside to this type of transplant is that those same cells would attack any remaining leukemia cells (called graft vs. leukemia -- GVL), thereby eradicating the disease. So for part two, Jon would come back in 6 months to give blood, and Dave would receive the cells through a transfusion as a pro-active measure to assure the disease doesn't relapse. (The process whereby Dave would receive the cells is called a Donor Lymphocyte Infusion, or DLI, with lymphocytes being the cells that were depleted in the first round.)
After talking with the coordinator of the transfusion last night, Dave has decided not to have the transfusion done at the end of August. We want to wait until we can talk to his doctor during our visit on the 28th.
Dana Farber is currently doing a study of patients who are 5 to 7 months post transplant, and who had T-cell depleted transplants. On one side of this study, patients would receive transfusions of unmanipulated lymphocytes from their donors -- this means that the cells would be gathered from the donors and given right to the patients. On the other side of the study, patients would receive CD8 depleted cells. In this case, the lymphocytes would be gathered from the donors and treated to remove certain cells -- the CD8 cells. CD8 cells are believed to be the cells that cause graft vs. host disease. CD4 cells (another part of the lymphocytes) are believed to cause graft vs. leukemia. These cells are left in for the transfusion.
The purpose of the study is to determine whether patients who receive the CD8 depleted cells avoid getting GVH but do get the GVL benefit, and whether there is a difference in relapse rates between the two types of transfusions.
After asking lots of questions, here's what we found out. So far, in the studies they've done, there are 13 patients. 6 received the unmanipulated cells, the rest received the CD8 depleted cells. Of the patients who received the CD8 depleted cells, none developed GVH, and ALL of the patients who received the unmanipulated cells developed GVH. Of those who developed GVH, one was stage 1 GVH -- the mildest, usually a rash treated with topical steroids; two developed stage 2 GVH -- the rash is a little worse and covers more of the body, and the gut is involved (read diarrhea), and it's treated with oral medications; and two developed stage 3 GVH-- the rash is pretty bad and covers most of your body, the gut is involved (lots of diarrhea), and the liver function is affected. This is treated with higher doses of oral medications, and sometimes IV treatments. None of the participants developed stage 4 -- everything is really bad, you're hospitalized, and asking your friends and family to pray. Two patients died after relapsing, one on each side of the study. One other thing to note, no one in the study was being treated for CML. The transplants were all done for other forms of leukemia and lymphoma.
So here's the deal. If we choose to participate in the study, we don't know which side Dave will be on -- it's a randomized study and the computer makes the assignment. Because we haven't had the biopsy done yet, we don't know how things are looking. Keep in mind, the transfusion at this point is a pro-active measure. They used to wait until patients relapsed before they did this procedure -- now they're doing to try to prevent relapse. CML has shown to be very responsive to this type of treatment -- for patients who have relapsed and received a DLI, all have gone into complete remission.
If we choose not to participate and Dave relapses, as long as the study is still going on, Dave would receive a transfusion of CD8 depleted cells. If the study has closed, we figure they're going to have that much more information available, and will know whether CD8 depletion is the way to go, or if unmanipulated is the better course. There is also a drug called STI571 that is in clinical trials right now, and is looking very promising.
So there you have it. More information than you probably ever wanted to know! I hope this hasn't been overwhelming. If you have any questions, let us know.
Hope you're all well and enjoying the summer.
Talk to you all soon.
Allison