Month 16, part A
I went in to the clinic on Wednesday this week because Thursday (yesterday) was Thanksgiving. Again, my blood counts were close to what they have been for some time. The additional test was for my adrenal gland and it also showed good function.
...... last week current normal
..... ---------- ------- ---------
WBC.. 8.4 ...... 8.2 ..... 4 – 11
Hgb.. 10.9 ..... 10.5 ... 14 – 18
Plt.. 301 ...... 321 ... 150 – 400
After consulting with other doctors, my doctor said she believes that my problems are mostly due to GvHD attacking my skin (deeper layers) and/or connective tissue under the skin. This could cause the body to rush fluids to that area to combat the trauma. Working on this theory, she increased my Cellcept dosage to 4 pills a day and added a high dose of another powerful immune suppressant drug, Prednisone, which is a steroid (corticosteroid not anabolic steroid). Most BMT patients take it at some point, but until now, I had managed to avoid taking it. It was prescribed for me last fall, but after filling the prescription (but not yet starting it), my symptoms eased and the doctor said not to take it. It’s a drug that scares me a bit because it can have a lot of unintended effects (nausea, dizziness, depression, anxiety, sleeping difficulty, increased appetite, increased hair growth, etc.), and should not be taken over long periods of time. She is hoping that after a week of a fairly high dose, she can start tapering it off.
I started taking the Prednisone yesterday morning, and by evening I thought I noticed less muscle soreness and a decrease in the swelling. However, I didn’t want to get too excited because it might be because of activity level or something. However, this morning when I woke up, I definitely had less muscle soreness than I’ve had in close to 2 months, plus the swelling in my limbs definitely seems to be somewhat reduced. Additionally, I haven’t noticed much at all yet in the way of side effects. I am therefore allowing myself to be encouraged that the problem is GvHD and that we can overcome it soon. I think the theory is that if we can get the Prednisone to knock it down, that the Cellcept will then keep it under control. Of course my hope is that before long they will start to wean me off the Cellcept again, but I also suspect that when they do so, it will be more gradual than before (which was reducing by 1 pill per day per month) which would mean I’ll probably be immune suppressed into the spring or summer at least. Although that is disappointing compared to hoping I’d be off it all by now, I would look at it as a temporary delay which is not that long in the context of how long it’s been and how long it could be. I also know however, that a chronic GvHD like this can go on for a long time.
The doctor did feel it necessary to add a warning that increasing the immune suppression not only suppresses the graft versus host (GvHD), it also suppresses the graft versus leukemia effect. She said that really believe my disease is in full remission since all the chimerism studies have shown 100% donated bone marrow, but that if there were any leukemia lurking, it would have a better chance at making a comeback. I also feel pretty sure that the disease is gone, so I’m not giving much energy at all to worrying about that.
The doctor says the GvHD may not account for my low pulse oximetry (blood oxygen saturation), so she is scheduling me for a CAT scan of my chest to make sure there isn’t something else affecting my pulmonary function.
Stay tuned, and thanks again for your thoughts and prayers.
Love,
Justin
...... last week current normal
..... ---------- ------- ---------
WBC.. 8.4 ...... 8.2 ..... 4 – 11
Hgb.. 10.9 ..... 10.5 ... 14 – 18
Plt.. 301 ...... 321 ... 150 – 400
After consulting with other doctors, my doctor said she believes that my problems are mostly due to GvHD attacking my skin (deeper layers) and/or connective tissue under the skin. This could cause the body to rush fluids to that area to combat the trauma. Working on this theory, she increased my Cellcept dosage to 4 pills a day and added a high dose of another powerful immune suppressant drug, Prednisone, which is a steroid (corticosteroid not anabolic steroid). Most BMT patients take it at some point, but until now, I had managed to avoid taking it. It was prescribed for me last fall, but after filling the prescription (but not yet starting it), my symptoms eased and the doctor said not to take it. It’s a drug that scares me a bit because it can have a lot of unintended effects (nausea, dizziness, depression, anxiety, sleeping difficulty, increased appetite, increased hair growth, etc.), and should not be taken over long periods of time. She is hoping that after a week of a fairly high dose, she can start tapering it off.
I started taking the Prednisone yesterday morning, and by evening I thought I noticed less muscle soreness and a decrease in the swelling. However, I didn’t want to get too excited because it might be because of activity level or something. However, this morning when I woke up, I definitely had less muscle soreness than I’ve had in close to 2 months, plus the swelling in my limbs definitely seems to be somewhat reduced. Additionally, I haven’t noticed much at all yet in the way of side effects. I am therefore allowing myself to be encouraged that the problem is GvHD and that we can overcome it soon. I think the theory is that if we can get the Prednisone to knock it down, that the Cellcept will then keep it under control. Of course my hope is that before long they will start to wean me off the Cellcept again, but I also suspect that when they do so, it will be more gradual than before (which was reducing by 1 pill per day per month) which would mean I’ll probably be immune suppressed into the spring or summer at least. Although that is disappointing compared to hoping I’d be off it all by now, I would look at it as a temporary delay which is not that long in the context of how long it’s been and how long it could be. I also know however, that a chronic GvHD like this can go on for a long time.
The doctor did feel it necessary to add a warning that increasing the immune suppression not only suppresses the graft versus host (GvHD), it also suppresses the graft versus leukemia effect. She said that really believe my disease is in full remission since all the chimerism studies have shown 100% donated bone marrow, but that if there were any leukemia lurking, it would have a better chance at making a comeback. I also feel pretty sure that the disease is gone, so I’m not giving much energy at all to worrying about that.
The doctor says the GvHD may not account for my low pulse oximetry (blood oxygen saturation), so she is scheduling me for a CAT scan of my chest to make sure there isn’t something else affecting my pulmonary function.
Stay tuned, and thanks again for your thoughts and prayers.
Love,
Justin
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