Survival Birthday-22 years
This week is my survival birthday. I have made it 22 years post diagnosis.:)
I am so happy to be here. I am also irritated that I still have this stupid disease. I am so very blessed and grateful. |
Wow - thats really something, keep going strong!
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Congratulations! Your news is very comforting, encouraging and positive to read!
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Lovely of you to let us all know how long you have survived with MDS, especially since most of the prognoses for different types of MDS are pretty grim. Thanks for the encouragement and hope!
I'm really interested to know what type of MDS you have? |
I think this is wonderful. When I told my husband you could see the renewed hope in his eyes. Thank you for sharing.:)
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Thrilled for you especially since I am told the stats say I have 5 years! I wonder if you are having treatments or has your disease been stable always? I'm so happy for you.
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Recent French analysis of IPSS-R from ASH 2012...
There is a brief summary posted today on the MDS Beacon Site that has updated overall survival for some higher-risk patients treated with Vadaza.:cool:
In summary "... median overall survival was 31 months for intermediate-risk patients, 18 months for high-risk patients, and 10 months for very high-risk patients ... using only the chromosomal abnormalities criteria of the IPSS-R, they also found ... median overall survival was 22 months for patients with good chromosomal abnormalities, 12 months for patients with intermediate chromosomal abnormalities, 15 months for patients poor chromosomal abnormalities, and 7 months for patients with very poor chromosomal abnormalities." |
Hey Lindajo, that is great news. May I ask what (if any) treatments you have had? I know what you mean about feeling blessed and grateful yet irritated!
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