I'm 45 years old, male, of American Indian heritage. Prior to the treatments (below) I had a BMI of 17% and was very active. I've been diagnosed with something called "Unclassified MDS" which appears to mean marrow failure without blasts or other MDS symptoms. Prior to this I've never been in a hospital as a patient ..
My journey through this started in November I went to my GP for a headache and was promptly hospitalized White blood cell count at that time was 3200, hemoglobin 5.2, hematocrit 15.4 and platelet count 9,000. Initial haptoglobin was less than 1. Folic acid was 7.8, vitamin 812 was low at 167. Ferritin was 552, total bilirubin 0.8, direct bilirubin 0.2. Reticulocyte count was slightly elevated at 3.6. LDH was normal at 174. TSH was 1.55. Iron 349, iron saturation 62%, serum iron 218.
There was evidence of rouleaux formation with teardrop cells on the peripheral smear. No blasts however, and the teardrop cells did not show during the two marrow biopsies I've had since then.
I've had ~40 units worth of transfusions since Thanksgiving 2011. I seem to last about 10-15 days before needing a recharge. Platelets last about 5 days with me and Hemoglobin will drop over the 10 days .. they will transfuse both when I drop below 8 on the HG usually my platelets are around 10 at the time
Cellularity was 40% in November 2011, 30% in February 2012
My treatments so far have been
25 days of 100mg Prednisone
Gained about 20 pounds; otherwise no effect.
5 weeks of Rituximab
Very bad reaction the first time.. Anaphylaxis followed by a skin condition resembling follicular infection or acne but much worse -- with lots of bruising and bleeding. They held off further treatment for 3 weeks and sent me to another doctor who worked out a premedication schedule which amounted to taking Cetirizine orally for a week before and doing an IV of Diphenhydramine 2 hours before the Rituximab .. Also the infusion of the Rituximab was slowed to a crawl (12 hours for the infusion) This seemed to work but in the end there was no effect
The plan now (which scares me) Is Anti-thymocyte globulin (ATG) treatment starting April 16th .. This one is very worrisome because of what I've read on reactions to it. Especially given the negative reaction I had to the retuximab. They plan to do it in-patient and with 24 hour monitoring for several days.
I've been typed for Marrow transplant and the search is on for a donor should the ATG not work out.
The ATG scares me a lot .. the more I read the more I see reaction problems and people who have not recovered from some of the side effects. I probably wouldn't have the fear except my google searches have found so many blogs from people who've not had good experiences with it .. and -- none of people that have. I'm sure there must be some positives as they wouldn't be performing the treatments but its pretty scary reading so far..