T+260: Uncertainty

Yesterday I went for my regular clinic appointment. I continue to feel well, and my blood counts were OK; haemoglobin 12.5, platelets 178, neutrophils 2.7 and lymphocytes 0.8. I saw a new doctor, which was a little frustrating, but they are a teaching hospital and this will happen.

It is now 4 weeks since the first DLI (donor lymphocyte infusion - I learned a new acronym); if I am to get any GVHD it will start happening soon! I tried to sort out my schedule for the coming few months, but it is quite challenging, as there is a great deal of uncertainty. I managed to nail a couple of dates:

• My next clinic appointment will be in one month's time on the 5th April. They are opening a brand new daycare cancer centre at UCH, and I will get to see it then.
• My next intrathecal (lumbar puncture) will be on the 10th April. I am not looking forward to it, but they must be endured. Just two more to go.
• The next chimerism test (to see if any of my original lymphocytes are still present) will be on the 3rd May.

The chimerism test  is 12 weeks after the first DLI. However, beyond that they cannot say when the next DLI would be. If I still have mixed chimerism, then ostensibly I would get another DLI in mid May, however this might be delayed. For example, I have GVHD at that time, they would not do another DLI because it would make it worse, and anyway the GVHD might indicate that the immune reaction is killing my original lymphocytes! We had hoped to start planning for a nice holiday in early 2013, but it looks like that cannot plan anything further ahead than a couple of months until this DLI treatment is completed.