Good day from the states. I got to know Macmillan via contact with a Macmillan member on another site. Friday past was the 5th anniversary of my haploidentical stem cell transplant. After one T-Cell non-Hodgkin's Lymphoma thrice; another, different T-Cell Lymphoma, and an age/treatment-related marrow cancer known as Myelodysplastic Syndrome (a precursor to Acute Myeloid Leukemia) all of which lead to having the three of them at once in 2015, it was clear that something must be done. I had pretty much exhausted available lymphoma drugs. It was my 5th salvage regimen, ("TEC" the 13th, 14th and 15th drugs I had received) which placed me in my 4th remission.
Searching the world database for acceptable donors back in 2009, none was found. So we went the research/treatment route. This time, 2015, the same result. Thankfully my two children were acceptable donors for a 5/10 match. I received my son's cells. Acute, then chronic GvHD followed and we have been coping with that as we shall from here on.
To control it, we have tried high dose prednisone (still receiving it), Narrow band UV-B light therapy, P-UVA therapy, a trial of prednisone combined with Ofatumumab (Arzerra), a trial of Kadmon KD-025, we finally discovered the drug which provided true relief: Jakafi, aka Ruxolitinib. Oh, I have my moments, but life is still worth living and new developments are appearing regularly.
Good morning po18guy and happy 5th rebirthday.... 5 years is like a lifetime but just yesterday all at the same time.
I often refer to my two Allo SCTs as my Magical Mystery Tour. Magical what they did, a complete mystery how it worked and definitely tour on a rollercoaster in a dark tunnel.
I am just over 5 years post SCT number 1 and 3 months from my 6th anniversary of SCT number 2.
Its not been smooth sailing but still enjoying the ride - wishing you many more years and many birthdays.
