[Carl Schneller]

I’m 82 year old male. Was diagnosed with MDS July 2018. 5Q and 7Q deletions. Tried Procrit for 9 months with no help. Had 3 blood transfusions and then went on revlimid 10 mg for 5 weeks and got bad rash so stopped for 2 weeks and then tried 5mg. rash came back and stopped again. During time taking Revlimid my hemoglobin went up into 11.0 plus and has stayed there. Revlimid has helped me and don’t know what to do if my hemoglobin drops to low again.

[Carl Schneller]

I am an 83 year old male in pretty good shape for my age. 2 1/2 years ago I was diagnosed with MDS 5Q deletions and 7 Q deletions. My hemoglobin was around 8.0 but everything else normal. Doctor put me on Procrit for nine months but no help. Hemoglobin went on down into sixes. I then had three blood transfusions each helping for 5 weeks. Last fall I went on revlimid for 5 weeks (10 mg) and broke out in bad rash. After a couple of weeks the rash kind of went away so started revlimid again 5mg doses. The rash came back so stopped after a couple of weeks. The good news is my hemoglobin has steadily risen to 11.9 the highest in years and I feel normal. Revlimid has helped me but do not know whats next, the rash is almost gone so ???

[Carl Schneller]

Hello Micheal, I have had another bone marrow biopsy and find I have 5Q deletions and 7Q deletions. The good news is that my blasts are zero. We are going to try Revlimid now. Will let you know how that goes. As for luspatercept, my doctor at Mayo clinic says it may be quite some time before it becomes available. Possibly up to a year but no one knows. My blood transfusion went well but will be needing another next week, lasted 5 weeks. Hopeing Revlimid will help. Gods blessings to you!! Carl

[Carl Schneller]

Hello Michael, I have the type MDS that is only affecting my hemoglobin counts too. I was diagnosed in July of 2018. I was on Procrit for 9 months but did not help me. My hemoglobin got down to 6.9 so last Monday, July 15, 2019, I received my first transfusion and feel much better and my hemoglobin was 8.9 on July 22. I am hopeful that Luspatercript will help me too. I believe the FDA may OK this drug in December or soon there after. As for the time being I plan on more transfusions.

[Author]

Posts