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Guidance re. stem cell transplant in 70s (MDS and CLL)
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: May 29 11:13pm | Replies (38)Comment receiving replies
@nbadry Hi! I was on Revlimid 16 months. Towards the end it was clear the disease was changing. I was so tired, I started missing family gatherings. My platelets were very low and anemia worsened. A BMB showed an additional 5 mutations totaling 7 with the original 2. My life expectancy was lowered to 1.7 years. MDS is a deceptive disease. I was always worried about the blasts, but you do have to be concerned about other things. One of my Oncologists says the treatments average about 2 years effectiveness. I am glad I avoided the AML I hope your new mutations do not put you at greater risk! Keep us posted.
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@janetlen Thank you. That's really helpful to know. I know what you mean about MDS being deceptive. I feel well -(my haemaglobin has gone from 7 to 12.5!), and I was really hoping to "put it in a box" for awhile. However with the new mutations I get the impression that that isn't going to be possible. I've got another BMB scheduled in 2 months. I'm wondering how frequently they'll keep tabs on what's bubbling away in the marrow...but I can ask that at my next appointment. Thanks again for your response. I really appreciate it.