scared

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• August 27, 2016 at 6:54 pm #30453
  Susan Robson

  Participant

  My husband was diagnosed with MDS Refractory anemia w/ excessive blasts type 2 (high risk) 3 1/2 months ago. He’s had cancer twice in the past plus liver cirrhosis and pulmonary fibrosis He is only 59. We started Vidaza right away and just finished our 3 round. We start 4th round in 2 weeks. HIs counts are all low WBC .4; HMG 8.0; PLT 20. He gets 2 units red blood transfusions about every 7-13 days and 2 units of platelets a couple times a week. Our oncologist says they have seen no improvement so far and will do one more round of vidaza and reevaluate.
  What are we to expect? He is tired a lot and is on oxygen 24/7 has been for 2 1/2 years due to the lung issues, struggles with nose bleeds, but doesn’t really feel too much different than he has prior to diagnosis.
  Anyone out there give me honest answers on what to expect. At diagnosis they gave us about 8 months with palliative treatment.
  Thank you.

  August 27, 2016 at 7:42 pm #30454
  Sherry Pratt

  Participant

  Get a second opinion for sure!!!! Where are you located?

  August 27, 2016 at 7:44 pm #30455
  Susan Robson

  Participant

  We did get a second opinion from John Hopkins in Seattle. It supports our current oncologist. We are near Spokane Wa.

  September 7, 2016 at 7:07 pm #30503
  Nadeem Khan

  Participant

  Please get second and third opinion as you cant really rely 100% of drs my mother was a healthy 64-65 yr old non smoker or drinker but crucially had breast cancer twice and beat it but had radio and chemo which brought about this horrible disease we were strung along right through her illness and were given no real helpful info regarding mds this is a little known blood disorder but a big killer and its great to know there are forums and websites etc available now i maybe wrong but i cant remember anything like the amount of info 6 yr or so ago i pray your husband is strong enough to get through this but ultimately the outlook is not good and having a loving family around is going to be vitally important i wish you all the best.

  November 11, 2016 at 11:56 am #30938
  Linda Souders

  Participant

  My original post is too long. Basically my 85 year old father who has COPD and CHF has ?? .. Doctor first confirmed it as AML, then did bone marrow blasts of 20% said it is CMML. Point is I know there are different sub types. My father is much older but his HGB WBC and Plateletts all not in normal range. When the HGB is low hard to breathe. You can read my original post if you would like, but my point is my father has been doing cycles of Dacogen and although his blood count is not “normal” they have improved dramatically with the “Dacogen” or “Decibine”…

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