Hi Jon. Sorry to hear that. I went thru 4 months of photopheresis treatment. It did not seem to help my condition (extreme dry eye GVHD). The treatment is not difficult and has hardly any side-effects. I had 2 sessions (2 days in row) once every two weeks. It takes 3-4 hours and it is quite boring. Discomfort comes from infusion needle that is little bigger. You'll need to avoid sun for 24 hours after sessions. Results are mixed bag. When it works it seem to work very well, if not ... well. It takes about 6 months or more to complete, but some improvement should show in 3-4 months.
Other than my dislike of spending 2 afternoons every other week in the hospital, I had no problems at all. Just did not see any improvement for too long and when I noticed that my docs were getting skeptical I decided to stop.
Good luck
Boris

Thanks. Very helpful information. Anyone else?
Jon

Hello Jonbi,
My late, precious husband, Ben went through a course of photopheresis. In lay mans terms, the procedure basically takes your blood from one arm, takes out some of the white cells, treats them with medication and then returns your blood into the other arm.
When Ben began the treatment, his body was already very weak from all the treatments he had, had, in the past for other complications from his stem cell transplant..Photopheresis definattely was working, however, it takes a long time before you will see results.
It can also affect your hemoglobin levels, Ben's stayed good throughout his treatments.
Unfortunately, Ben was only able to have 13 treatments , because he began to get weaker and weaker from other issues in his body, that we're caused by the treatments for those issues.
All in all, Ben did benefit from photopheresis, and it was a procedure he went through without any problems.
Other patients we met at the photopheresis clinic, who were also being treated for GVHD were generally pleased with their very slow results. One said his skin was no longer on fire and he was needing less prednisone.
I wish you all the best with your treatment Jonbi, Ben was my hero and everyone affected by AML has a special place in my heart.
Love,
Sandra

Dear Sandra
Thanksvery much for your your help.
I'm sad to hear that you lost Ben to this retched illness
Ben,s history with Photophersus is very helpful to me, as well as your observation of others being treated.
In my case my gvhd has hardened areas of skin and has tightened my joints. Ive also had trouble with fast growing carcinomas.
I live in New Zealand and have to go to California for treatment. Going away for six month is difficult, and hearing from you helps a lot.
Again, we are very sad to learn about Ben and send our best wishes
Jon