Just a quick update on an interesting week. Friday my dermatologist shared pathology results to confirm the skin changes are Graft-versus-host-disease. She called Dr. Brown, my transplant doctor, and he immediately started me on a high dose of prednisone that afternoon. Monday I started PUVA, or light therapy, which means taking medication an hour before standing in a tube that shoots UVA light for a few minutes. I'll do that three times a week and see if that helps stop the rejection.
Today I went to the hospital to see Dr. Brown and he has added cyclosporine to the attack on the GVHD. Cyclosporine is what I took post transplant #1 and 2, and when I had GVHD in the past - it suppresses the immune system as does prednisone. They will also need to monitor for other signs of GVHD (liver, eyes, etc) as well as the host of side effects the prednisone and cyclosporine will provide. I am all too familiar about those - and any of you who knew me in the Fall of 2003 will perhaps recall the "pred-n-zone" I was in for a while. The dose I am on now is less than 2003 but still quite significant, so uncertainty is the key word right now. They will also need to monitor cyclosporine levels in my blood for toxicity, as well as glucose levels from the prednisone and magnesium and calcium levels as prednisone will cause bone loss. And a bunch of other levels and things...
I also saw Dr. Campbell this morning, the plastic surgeon who did the skin graft on my neck in 2006 - he extended my antibiotics another week and will do a biopsy a week from Tuesday to see what is going on there and if it has any connection to the GVHD.
It's all a bit of a blur right now but the summary is really - a lot more medication with a variety of side effects to hopefully counter the rejection disease before it progresses further (the skin spots have increased, thickened and are hardening - they could be debilitating if they continue) - and more treatments and bloodwork appointments.
The good news is that currently the skin is not painful and that they are being aggressive to counter the GVHD. And with Ryan's situation close at hand, I am thankful that it is GVHD and not a relapse.
It is rather amazing what can happen in a week! Good night...
7 comments:
Love and prayers Tricia
Uncle Ed and family
Dear Tricia,
I am clinging to the good news in your second last paragraph and hoping and praying for the treatments to resolve your current situation successfully.
Love, BJ
"Cowgirl Ellie" is praying for you.
Hi Tricia,
Bob & I send lots of love & prayers your way.
Dear Tricia,
You must have sensed our eagerness to be updated on your situation. Thank you. You have a real gift for providing a clear picture of what is happening for you while keeping a tone of purpose and hope.
As always, we cling to the "good news" - that your treatment has already begun, your skin is not painful and you are not having a relapse.
At the same time, we are sorry to hear that you have had to go on prednisone and cyclosporine before seeing whether light therapy might do the job for you. Obviously your doctors felt that there was no time or treatment option to waste in attacking the Graft-versus-Host Disease.
We also know that you were hoping to get a skin graft on your neck as soon as possible. Another round of antibiotics followed by a biopsy will mean a delay in that regard, too. As you say, "uncertainty" is the key word here, and "waiting" seems to be synonymous with it.
It was just recently (during our visit with you in Calgary) that you told us about the "zone" you were in the last time you were prescribed prednisone and cyclosporine in high doses. As a result, we will focus our minds and energy on the safety and preservation of your spirit as your body undergoes its harsh treatment process.
Take good care of yourself, Tricia. As your doctors closely monitor your progress, we will be holding you just as devotedly in our hearts.
Lots of love,
Louise and David
Hi Tricia,
Just popping by to let you know I love you lots and am thinking of you always!!!
Big big hugs!
Barb
Hi Tricia,
Hope the biopsy went well today, thinking of you lots!
Love & prayers,
Sonia and the boys
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