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This topic has 4 replies, 1 voice, and was last updated 10 years, 10 months ago by alisaki.

Viewing 5 posts - 1 through 5 (of 5 total)

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May 31, 2013 at 11:09 am #23775

alisaki
Participant

Hi
i am ali and 27 years old .1 years ago i understand i have MDS 5q del. when i use (((https://www.mds-foundation.org/ipss-r-calculator/)))
result show me 8 years to survive.
what that mean???? 8 years later i am die??? or my MDS go to AML???what happen if i dont use any treatment???
pleas hellping me to know .
i cant speak english well. short abd simply answering.
thank you very much.

June 6, 2013 at 6:25 pm #23776

Mary4Mike
Participant

Welcome!
once thing you will learn with this disease is that everyone is different! Everyone has a different response to the different treatments. You are young which is in your favor. Have they mentioned transplant to you? Why are you boycotting treatment?

June 7, 2013 at 10:14 am #23777

alisaki
Participant

Hi Mary
no . my wbc is very low . and my dr told me transplant not good for me. about boycotting : i am living in iran and hier not drug lik revlimid i think country have Revilimid not sell it to iran.i dont know what i have to do.my drug now is B12-B6-FOLIC ASID.i have stress .
thank you for reply.

June 7, 2013 at 6:02 pm #23778

riccd2001
Participant

Hi Alisaki: I’m sorry to hear of your situation. Although I’m much older than you, I have 5q del MDS also and did try 10mg Revlimid for 4 weeks. I had to stop using Revlimid because it caused my WBC to fall to a dangerously low level – that is a known side effect for Revlimid.

You say that your WBC is low and I don’t believe Revlimid would be a good treatment for you at this time. With low WBC you have to be careful to avoid infections.

June 7, 2013 at 7:36 pm #23779

alisaki
Participant

hi dear riccd2001 thank you.
i don’t know that detail about revlemid. but what i have to do.what kind of drug good for me.my dr don’t tell me any thing about mds . he just reading my blood test.evry month and take from me money i am so angry of him…
and now stress and pressure killing me
thank you again .
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