I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis.
I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges and I am working full time in a job I started just under a year ago. I don’t suffer with fatigue and have had no infection or illness for nearly 18 months. My childhood inoculations are all up to date.
Anyone considering a stem cell transplant, there really are positive experiences out there.
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KAS8
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That's brilliant news amd I'm glad you posted I often wonder how you are getting on ,as you may know I went down the ibrutinib route around the same time as you started your journey and I also am in remission and compleaty fine although I still have to take pills every day and have acid reflux .
SCT is probably my next call my consultant said it will be veneticlax as a pathway to STC if my ibrutinib fails but of course that could change in a developing landscape .
I'm so pleased for you and thanks for keeping us all informed x
Sounds like you are doing really well. I am glad that the SCT came early on as I was young and fit enough to deal with it. My concern about long term Ibrutinib would be the potential impact on the heart as I have seen others have issues. One of the main checks pre SCT was the heart to ensure it was robust enough to handle the treatment. Perhaps worth asking your consultants.
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Can you get life insurance after being diagnosed with CLL?
Transplant coming soon!
low dose antibiotics/life after Ibrutinib?
