What can I expect in end stage MDS?

Hi:

It sounds like your Dad is in the end stages of MDS as you note . As a caregiver this is a very stressful time. It is best to ask his doctors how long this can go on for in his case and at the right time what sorts of treatment do they suggest for comfort. Have you talked about palliative care for him when it is possible that is the best additional care for him.

Best regards

Dan Tobin

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Thanks for your imput.

I have a long history with terminal cancer and palliation. I have gotten his primary to put him on a long acting narcotic for him to be comfortable. He started him on 10mg of oxycontin I increased it to 20mg as the 10mg was not helpful. No one can give me an answer as to what to expect he has been up an down. although 2 years ago, the hematologist I was working for , she felt he would convert to aml in 2 years.

I am a nurse practitioner with a varied backround. I am at a loss as I think this is it , and then he rallies, I feel better now as he is comfortable though he will not admit it. My only concern is that he is comfortable. I will advocate for him all the way.

Eileen

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My 78 yr old mother was diagnosed with MDS in Dec 09. Unfortunately, we caught it too late. Looking back at her previous lab results, this was showing up in '06,'07,'08, and in '09. Her doctor in her home town was telling her to just take some iron. Anyway that's a different subject. I,too am wondering how much longer. In the last 2 weeks,I have seen quite an decline in her health. She can no longer walk without assistance. She can't think or talk in complete sentences. Her nose and gums started bleeding so I brought her to the ER where they admitted her. White blood count was 1.1 ; PLTs 18; RBC 2.6;HGB 8.0. She was low in sodium and potassium. I am wondering WHY is her thinking and speech affected? She was given platelets again. Since Dec she has has 17blood transfusions and 5 platelets transfusions. She is being treated with Vidaza and is to start again this Monday. Not sure she can physically take it. What else is to be expected at this point?

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I am so sorry about your dad. 15 years ago my son was born with MDS and has been in remission 14 years thanks to dr. bowman. I will pray for ur father

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