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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
@janetlen
Hoping you continue to improve and feel stronger as time goes on after your transplant.
I think I read previously that you had MDS del5q and were on lenalidamide? Could I ask how long the drug worked? What were the signs of disease progression and did you acquire any new mutations or chromosomal aberrations? I have del 5q and started lenalidomide 4 months ago, with amazing improvement in anaemia. I feel well. However a recent BMB showed new Trisomy 8 and DNMT3A mutations. I'm waiting to hear what the transplant team have to say about timing, but I'm now very scared about future progression to AML before I'm given a transplant. I've read that AML secondary to MDS is harder to treat. Could I also ask about the frequency and type of monitoring you had whilst on the lenalidomide? Thank you.
Replies to "@janetlen Hoping you continue to improve and feel stronger as time goes on after your transplant...."
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@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.