May 01, 2012 - 12:25 pm
Hello all. I'm new here. I was diagnosed on 4/13/12 (Friday the 13th!) with marginal zone B cell lymphoma and its sometime companion, immune thrombocytopenic purpura - mercifully known as ITP. ITP is an autoimmune disorder that also involves the B cells and causes the immune system to destroy platelets, which makes it more complicated to treat the lymphoma.
I was in the hospital for nearly a month after being diagnosed, because my platelets were so low (18 when I went in, 29 now - low end of normal is 150). This is something I will have to live with for a while. My current treatment is Rituxan and prednisone - I can't have the standard CHOP chemo because of the ITP (long story); Rituxan can take 9 months or longer to replace the current crop of B cells with a new and hopefully healthy batch. I may eventually be able to have CHOP, but until the ITP comes under control it's not an option. It could also be that the Rituxan/prednisone will have enough good effect that I won't need CHOP at all, and of course that would be wonderful. In the meantime, I feel very well and would not know anything was wrong with me had this not been discovered by accident. Amazing what dark secrets can lurk in our bodies.
Like everyone else here, I'm in uncharted territory and trying to learn as much as I can about what I have, what the options are, and what to expect. I'm especially interested in hearing from anyone else who may have the lymphoma/ITP diagnosis or who has had good success with Rituxan/prednisone alone. I've done a LOT of reading (not much else to do when you are in the hospital for a month!), but most of it is pretty abstract, and there's no substitute for the knowledge and experience of people who have actually been down the path ahead of you.
Looking forward to getting to know everyone and to becoming part of this community.