Well the summer is over for me as I find myself back at school for work this week. Things are going well so far. I've had plenty of energy throughout the day, which was the big issue last spring when I went back. My GVHD symptoms are also under control right now. The rash on my arms and legs faded away and my skin looks very clear. The rest of my skin has improved as well, and there isn't any itching or peeling to worry about right now. Swallowing isn't difficult and the mouth pain and discomfort is under control. So while things aren't quite perfect, I'm not complaining much either.
Since starting the prednisone in the beginning of the summer I've had to visit NIH twice a week for a microfungin injection. I was taking fluconazole as my prophylactic anti-fungal, but apparently it doesn't react well with the level of prednisone I was taking. So the bi-weekly microfungin injection wasn't so bad during the summer when I had nothing to do during the day. Now that I'm back to work it would be a bit more of a disturbance to head across the beltway to NIH twice a week.
So I made it to NIH today and my nurse let me know that my infusion had been put on hold. I also had picked up some prednisone at the pharmacy, and they had a bottle of some other anti-fungal, voriconazole. It turns out that my NP and the GVHD team decided to put me on this new antifungal rather than the microfungin. The reason I hadn't been taking the voriconazole before was that it has adverse reactions with sirolimus. Since I am no longer taking that drug, voriconazole is now an option. So I'm happy that I won't have to head over to NIH twice a week at this point. The less time spent at the hospital, the more free of this disease I feel.
Unfortunately I'll have to head over to NIH tommorow and be late for work in the morning. My tacrolimus dosage was raised when the sirolimus was discontinued, and the blood test which gives the team the tacrolimus level in my system is time sensitive. So its a nuisance to miss time from work during the first week, but I have to remember to be thankful that at least I'm able to work right now. I'll still need to miss work for appointments now and then, but a few hours missed here and there is certainly an improvement over 5 months out of work.
Thursday, August 20, 2009
Friday, August 7, 2009
No More Sirolimus
Life is good! Can't forget that.
So yesterday I had one of my current bi-weekly visits to NIH for an anti-fungal infusion, and saw the nurse practicioner and another doctor who have been following me. The rash on my arms is looking a lot better, and my lower legs are looking about a week behind what my arms were. The itching is much improved, and it doesn't really bother me much now. The rest of my skin has cleared up a lot, and overall I'm feeling pretty well.
The GHVD in my mouth is about the same, which is to say its tolerable but doesn't really look good at all. With the mouth not quite looking better and the rash still unexplained, they don't want to rush tapering my prednisone. The problem with that decision is that they don't like how long it looks like I will be on the prednisone. It has plenty of negative side effects including deterioration of the bones and cataracts. So a decision was made to alter my immune-suppressant regimen in order to help improve my GVHD symptoms.
I've been taking sirolimus and tacrolimus throughout the whole transplant process starting in December. My doses for those medications have already been tapered to a minimal amount, and the plan would probably have been to take me off of them if the GVHD symptoms had not shown. Sirolimus is a drug that can cause side effects in the mouth, so they decided to remove that drug from my menu! Thats a relief. Any time I can move away from a drug, especially one that I've been with so long, feels like some sort of success.
The flip side of that is that the amount of tacrolimus I take will be increased in order to put my on a more therapeutic level. That will hopefully suppress the immune system enough to help ease the GVHD symptoms. With the tacrolimus pulling more of its weight with the GVHD, then hopefully the prednisone can be tapered at a quicker pace.
So lets hope the plan helps ease the GVHD and I can return closer to "normal." Its good to note that at this point the doctors aren't concerned about an increased level of immune suppressants hindering the graft versus tumor effect. Before the last two PET scans there was a hesitation to increase my immune suppressants because the main goal was, and still is, to eliminate the cancer. At this point the team doesn't feel that higher immune suppressants will have an effect on the cancer remaining in my body. Lets hope so.
So yesterday I had one of my current bi-weekly visits to NIH for an anti-fungal infusion, and saw the nurse practicioner and another doctor who have been following me. The rash on my arms is looking a lot better, and my lower legs are looking about a week behind what my arms were. The itching is much improved, and it doesn't really bother me much now. The rest of my skin has cleared up a lot, and overall I'm feeling pretty well.
The GHVD in my mouth is about the same, which is to say its tolerable but doesn't really look good at all. With the mouth not quite looking better and the rash still unexplained, they don't want to rush tapering my prednisone. The problem with that decision is that they don't like how long it looks like I will be on the prednisone. It has plenty of negative side effects including deterioration of the bones and cataracts. So a decision was made to alter my immune-suppressant regimen in order to help improve my GVHD symptoms.
I've been taking sirolimus and tacrolimus throughout the whole transplant process starting in December. My doses for those medications have already been tapered to a minimal amount, and the plan would probably have been to take me off of them if the GVHD symptoms had not shown. Sirolimus is a drug that can cause side effects in the mouth, so they decided to remove that drug from my menu! Thats a relief. Any time I can move away from a drug, especially one that I've been with so long, feels like some sort of success.
The flip side of that is that the amount of tacrolimus I take will be increased in order to put my on a more therapeutic level. That will hopefully suppress the immune system enough to help ease the GVHD symptoms. With the tacrolimus pulling more of its weight with the GVHD, then hopefully the prednisone can be tapered at a quicker pace.
So lets hope the plan helps ease the GVHD and I can return closer to "normal." Its good to note that at this point the doctors aren't concerned about an increased level of immune suppressants hindering the graft versus tumor effect. Before the last two PET scans there was a hesitation to increase my immune suppressants because the main goal was, and still is, to eliminate the cancer. At this point the team doesn't feel that higher immune suppressants will have an effect on the cancer remaining in my body. Lets hope so.
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