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Hi Catherine ....
I'm so sorry to hear that you're going thru these scary things at such a young age.... my advice to you would be :
1. Don't panic !
2. Get educated as much as possible on your diagnosis... ( and it sounds as though that is not clear at the moment ).
3. Ask for a second opinion...fresh eyes on your case can only help, especially if it's at a teaching hospital, or cancer treatment hospital.
4. Many Dr's do not like to guess on prognosis ... ( ie, how long you live ) as this disease is quite unpredictable and greatly varies from individual to individual.
5. Don't give up hope.... and be persistent .... you may be an excellent candidate for a bone marrow transplant which is considered the only 'cure' for MDS.
6. Hold on to your future plans loosely... MDS often creates a future with a lot of 'maybe's' and 'depending ons' ... if you're a 'ducks in a row' kind of person, you will need to adjust your expectations for a 'concrete' life .....I know, easier said than done....( been there done that ) .
7. Seek out help from close friends , family, or a therapist..... trust me... you WILL need a support system ....
8. Don't panic !!! ( oh yeah, I said that already ) .....
Take care, and please let us know how you're doing.....
Ann
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