I have officially started Extracorporeal photopheresis (ECP) treatment for my skin GvHD. Every Wednesday and Thursday for the next 6 months or so I will go to Toronto General Hospital to receive treatments. The treatment itself only takes 2 hours, as long as everything goes smoothly. I felt slightly lightheaded and tired during but no other side effects. The IV sites are a little tender which will probably get worse as treatment progresses but it’s much better than having a PICC line. After treatments I must protect my eyes and skin from the sun/light. My Dad brought me to my first appointment so I could see how I felt after treatment and if I would be able to drive. After my first appointment we walked around the Eaton Center before going out for dinner. As much as I’ve been dreading this treatment, it was nice to have him there. He definitely made it more enjoyable.
Photopheresis
One Day At A Time 
Thank you for sharing. We’re also Canadian! My son got diagnosed at 20 years old with acute lymphoblastic leukaemia. He now just turned 24 and still has a lot of Gvhd. Alec started Jakavi about 3 months ago. He is also taking Tacro, cellcept and now down to 20 mg prednisone. Jakavi is the only thing finally helping his scleroderma and you’re giving me hope that it will get even better. I appreciate your story and understand the shock and sorrow of your diagnosis. So happy to read that you are healing although I understand the difficult road you’ve been through. Please take care.
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Thank you! It’s nice to hear from someone who can relate.
I hope your son continues to see improvement with Jakavi!
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