[sophiesgranParticipant]

Thank you for your replies rabbit and David,
Much to think about. From what I can see the risk of developing another blood cancer is 1-3 percent. Where as we all know, the risk of relapse is 100 percent at some point. Maybe my consultant thinks I am at higher risk as I have had all the drugs mentioned in your post,rabbit.

David, you have done amazingly well on this line of treatment. It sounds like you are tolerating it much better than I am.
I am sorry to hear third line may be on the cards for you next year.

I will have another chat with my consultant. Part of me is tempted to come off it and live a normal life, but at the moment the treatment is working really well. Will I be jumping out of the frying pan into the fire?

[sophiesgranParticipant]

I have been on Dara since January 2023,so on maintenance for three years. The side effects have been mounting. At my recent consultation the consultant said I think it’s time to stop this line of treatment. This totally took me by surprise! She said if you stay on it too long, it can damage the bone marrow causing mylodysplasia. Has anyone else been told this? It’s the first I have heard of this possible side effect.
She said it will stop working at some point and a break from treatment will mean when I do relapse I will be in better shape for another line of treatment

[Author]

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