Well, the fourth DLI went just fine. Actually they all go just fine - it's just an infusion of a little bag of blood. That's pretty routine to me now - I could do it myself. After the transplant I had to hook myself up for infusions of various meds on a home health care outpatient basis. I still have my central venous catheter (CVC) in my chest, so they just put me in a hospital bed, hook me up, and connect the bag(s). I've had the CVC in since last August. It's a little bit of trouble to maintain because it (two lines actually) has to be flushed daily. It has to be kept dry, so no regular showers, and the dressing has to be changed and the site disinfected twice a week.
A few weeks ago I had a sudden swelling of the lymph nodes on the left side of my neck. They came up over about 3 days and got so big that I could hardly turn my neck. I called Dr. Khouri and he had my local oncologist schedule me for 4 weekly infusions of Rituxan (my old friend). He also gave me 96 mg of Medrol, which is a nasty little corticosteroid. Medrol, when taken over an extended period of time, eats your muscle mass away. But it is good for fighting inflamation and stopping the flow of white blood cells (like leukemia cells) into affected areas. So it is used frequently for leukemia and lymphoma.
I had the last infusion of Rituxan two weeks ago, the week before I went back to MD. The nodes went down about half way just a few days after the first round of Rituxan and the Medrol. They stayed that size and are still about that size now. A round of Rituxan by the way costs about $15,000. Thank goodness for good insurance.
The nodes were still swollen when I saw Dr. Khouri last week. He was concerned. It is either the leukemia or a virus. Funny how it is so localized in the left side of my neck. Khouri said that the PETscan and CT scan showed things looked like they did in February, the last time we ran the scans. And there is no sudden swelling of the nodes anywhere else. Dr. Khouri told me that I am off the map, or something like that, meaning that I am a unique case. Ugh, that sounds like guinea pig to me.
I go back in June for a follow up. If the nodes are still swollen he will run me through a week of some nasty chemo (goodbye hair). If they swell up anymore in the meantime, I have to go back immediately for the chemo. If they go down by June then I'm off the hook. I am hoping that it was some kind of virus. The nodes did swell up a few days after we got back from Hilton Head, so maybe I really did pick up a virus walking the beach barefooted.
If they are still swollen in June he will also do a biopsy of the nodes. That's called a fine needle aspiration. They stick a long needle in your neck a few times to get plenty of sample - and they don't deaden it. Believe me, that fine needle ain't so fine after about three or four sticks with it.
I asked Khouri if his preference was to go back to the donor for more lymphocytes, since we just used the last bag, or to pursue another transplant. He stated that he would rather go back to the donor for more lymphocytes. That was pretty good news since I was gearing myself up for another transplant.
I haven't got the results back from all the tests they ran last week. I hope they showed that the transplant is making some progress. They run all sorts of blood and DNA tests every time in addition to the PET and CT scans and the bone marrow aspiration and bone biopsy.
I have to keep telling myself that it's a process, not an event. A marathon, not a sprint.
Ciao (um - love that Italian food)
