I'm Paul Raffer and I'm a Neurologist, a physician, and practiced, until I became ill.
My first symptoms were a very common manifestation of a lot of things called rash.
It took awhile for that to be diagnosed correctly.
I have a very good friend who recommended a very good dermatopathologist and dematologist.
And he looked at it and he said he'd have the biopsy would be back in about a week,.
And he called me, and he said, "You have Mycosis Fungoides. I would recommend that you go to
Stanford and be seen by Dr. Kim who, if not one of the world's experts, is certainly the
West Coast Guru for what you have."
Paul Raffer has Mycosis Fungoides and the Sezary Syndrome, which is a leukemic, involvement
of the skin, as well. So, it's a variant of cutaneous T-cell lymphoma.
Dr. Kim and her team saw me and they said, "You have Sezary Syndrome, and that makes
you automatically Stage Four." Stage Four of anything is, basically, a fatal prognosis.
I felt very much like this might be the end of my life.
But I figured, if anyone was gonna to be able to figure out the way to treat this, it would
be the team here.
Unfortunately, he failed the milder treatments, and then he had to move on to some more cytotoxic regimens.
They said, "Well, we think the stem cell transplant is what's next for you."
But you had to have a Sezary count which is the account of the number of malignant cells
in your blood of under two thousand. And, mine were well above that level.
Allogeneic transplant is very complex process because we have to destroy the host blood
system and have the donor to reconstitute a whole system, and during this process patient
has risk to have infections and also graft vs. host disease.
So I started in chemotherapy and it got the leukemia count down to a level that I could
start the transplant protocol. Now, the first leg of the transplant protocol involves radiation
of the skin and things went very badly: Fever. Cultures negative.
I came back at the end of the fourth week, and they got the blood count back and the
Sezary count was way high, and they said, "we have to cancel the stem cell transplant.
I remember that's right before Thanksgiving and we were in the room with him and his wife
and we're all crying, you know, because we say, no, we can't move forward and at that
time, we're not quite sure he won't ever make it.
Dr. Kim came back in the room after everybody left and sat down and she said, "I'm with
you here. We're gonna fight this. You're strong." And I believed her.
After he failed a lot of treatments, finally, a drug, called Denileukin Diftitox cleared
his blood. And then, we added the total skin radiation, which is a unique radiation that
we have at Stanford, where you can treat the entire skin surface.
So that put him in enough stable remission so that when we gave him the transplant, it
stayed clear.
It's lasting almost three years now. He has no disease. So we're very happy.
One thing I learned is, never give up. Every patient different and we always say "individualized
medicine" That's what we do here.
I just had a very good feeling that this was gonna work, because Dr. Kim had that about
her. She was always very optimistic.
Every time we see him, we get very teary, because we knew that, he definitely would
not be here today without the transplant.
We're just so happy for him. He has regained his life.