Getting Things Back Under Control

By the time I got to the clinic for my standing Monday appointment, the skin GvHD was pretty extensive. It was on and in my hands so bad I could hardly even straighten out and wash my hands. And my feet felt like I was standing bare foot on gravel. I had skin GvHD from neck to the tips of my toes, literally.

So they didn't waste any time. They gave some Medrol, the dreaded steroid that eats your muscle mass, via IV and doubled my daily Taco dose to 2 mg per day. I've got Medrol pills to take thereafter. We'll taper off the Medrol very quickly as soon as the GvHD is under control. Medrol is nasty stuff.

Unfortunately, Dr. Keating didn't get to see the effects of the Rituxan on the nodes before the Medrol kicked in. So when I saw him on Tuesday, the nodes were way down, courtesy of the Medrol. Keating had to rely on my observations on how well the Rituxan worked. I gave it a 30% to 50% effect before Medrol, which I was actually disappointed in. He wasn't disappointed in that level of response he said; he just wanted some noticeable effect. He decided to give me another round this Thursday, tomorrow. So I'll be a couch potato for a couple of days unless the Medrol keeps me hyped up a little to offset it.

I didn't get the blood level Tacro level back last Thursday before I left the clinic since it takes all day for the Tacro test to come back. So I asked Keating's nurse what it was. She said on Thursday the reading was ZERO. Zero. The APN and PharmD in the clinic should have been all over that Thursday evening or Friday morning and been upping my Tacro right then. Raising my Tacro dose immediately might have saved me some pain Sunday and Monday and might have kept me off the Medrol. They better have a good reason when I see them in the morning. If they don't they are going to get a big earful from me. I just don't suffer incompetence well. MDA is a great place and everyone makes mistakes, but that kind of sloppiness is just not acceptable. They're not going to have a good Thursday if things are as they appear.

Going forward now, we know what level of Tacro in the blood stream to balance at. We have to get rid of the GvHD. Taper off the Medrol. Get the Tacro level back to where we want it. Hit the CLL/Lymphoma with more Rituxan to keep it at bay. Then sit back and wait for the graft (new cells) to work on the pesky remaining CLL/Lymphoma cells.

Basically we're trying to get back to where we were on Day 54 just before the nodes popped up. They'll keep me here after we stabilize again to see if any more nodes come up. And that's the way the process plays out - trial and error, see what happens, fix it, try again. That's why they keep you here so long after transplant.