Day 63
Just got back from the ATC (ambulatory treatment center) and today's in patient infusion of the usual stuff - no big deal. They may reduce my trips to the ATC to just twice a week pretty soon. I still give myself infusions all the other days, so it really doesn't matter much. But you do have a little more freedom when you hook up the infusions yourself. Plus, you don't have to lay around a hospital room all morning.
The magnesium levels are up because Dr. Khouri has reduced the Tacrolimus dosage. Tacrolimus is the anti-rejection drug which also strips the magnesium out of your body. They are reducing the amount of magnesium in the fluid IV and making me more dependent on the pill form. All that in preparation for going home.
November will be an interesting month as they get me ready to go home. There is some strategy to the game beginning to take shape.
Dr. Khouri is getting more aggressive about going after my enlarged lymph nodes. The lymph nodes in my neck and under arm area are still enlarged, indicating some residual disease in them. When I get back from Thanksgiving, they will run a PET scan, CT scan, and a bone marrow aspiration/biopsy, which will tell the tale about any residual disease.
Dr. Khouri has reduced, and will probably soon eliminate, the dosage of Tacrolimus. It seems to me that he is being aggressive in reducing the Tacrolimus in order to get the lymph nodes down while there is still some Campath present to act as a buffer against GvHD (graft versus host disease). In a way, the Campath reduces the effectiveness of the new cells. And so does Tacrolimus. So I believe that having both in my system has arrested the new immune system to the extent that it hasn't yet eliminated the residual CLL disease in the lymph nodes. But if the Campath wears off and the Tacrolimus is at low, or zero, levels, GvHD could rear its ugly head.
So my anticipation is that Dr. Khouri will eliminate the Tacrolimus on Monday in order to get the new system to go after any disease left in the nodes. Then when I come back here after Thanksgiving he will run the scans to see if there is any disease, and then put me back on Tacrolimus in anticipation of the Campath wearing off. Then he will see me again in early January to re-evaluate.
To refresh your memory, Campath is the monoclonal antibody that targets cells which have a certain protein called CD52 on their surface. Both diseased as well as healthy cells have this protein, so Campath not only destroys CLL cells, but also weakens your white blood cell counts. But that's okay because it means that it will inhibit the donor T cells which cause GvHD (graft vs. host disease) rejection issues. That is the reason that my white count won't stay up, but it also keeps me from getting GvHD. Apparently Campath can stay around in your system for a few months. I got Campath as part of the pre-transplant chemo back in August.
1 Comments:
Sounds like Dr. Kouri is making his move on the nodes. Yes, these will be interesting weeks ahead.
Sounds like it will be Monday when the Dr. makes his rounds. Just stay alert to signs of change, you know so much about this disease. I continue to marvel.
Sondra
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