Hello! I have been silent for a long time now. It was just because nothing special was happening. Then, last week, I went to visit my “graft doctor” on a regular visit. I had previously made a blood analysis and everything looked under controle…
But, on the week before my visit, I had the feeling that something was “wrong” in my mouth. Was GvH making its come back ? (I had a previous experience at the end of last year, so I was thinking that I guessed right…). My doctor told me that yes it was chronical GvH… One way to fight GvH is to use corticoids and/or increase the Neoral. Doctors don’t like too much corticoids. So, she told me that I will have to take more Neoral (40 mg twice a day instead of 30 mg)… She also told me that we could use “a new technique” called photopheresis. It is use to fight GvH, as well as other diseases. So, last Friday morning I visited again the Saint Antoine Hospital! The nurse and the doctor explained me what was photopheresis (of course I had already done some literature search on the subject! Researcher one day researcher for ever!). It is pretty simple, and similar to cytopheresis. Using a special machine to which you are connected via needles and tubing incerted in the veins, a small amount of blood is taken out of the body; the blood is centrifugated to separate the white cells from the other components. When enough white cells have been collected, they are flushed out in a special set up. A photosensitizer is added to the cells and then UV is applied for a given time (the chromophore used is an intercalant, which enter the DNA: under UV, a photochemical reaction takes place, destroying the DNA but keeping the cells intact). At the end, the treated white cells are reinjected to the blood stream….(http://emedicine.medscape.com/article/1131176-overview). The real mechanism explaining why this can lower the GvH reaction is fare to be clear for me! Anyway, it seems to be working 80% of the time!One problem with this technique is that several photopheresis have to be done, once a week for several weeks, then not so often. To see a real effect, once the “lichen” in the mouth is gone, is not obvious since two things are changed at the same time: the increase of Neoral and the photopheresis! So, to be sure that it worked, Neoral will have to be decreased: if the mouth GvH does not come back, then we will be able to claim victory! If everything is working, I might end up with no more Neoral: it is the goal!
A last thing: on the day I went to the hospital, I received a letter from my bone marrow donnor! I was moved from deep in my heart, almost crying…. She was responding to a letter I sent her to thank her a few months ago. Although I will never know who she is, I know more about what she had been through in order to give me her precious hematopoietic stem cells: I don’t think that she will ever read this blog but anyway I want to thank her again and again and again, for giving me the chance to live!
And to visit places I never visited before, such as “les gorges du Verdon” in Provence; or to see iris in display around Bourges, in the center of France…
Enjoy life everyday!
ppmhk 