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What can I expect in end stage MDS?

5 answers | Last updated: Apr 28, 2014
npmadsen asked...
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Caring.com User - Dan Tobin, M.D.
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Dan Tobin, M.D. is the CEO of Care Support of America, a national service providing telephonic and local nurse counsel to adult children...
43% helpful
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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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33% helpful
npmadsen answered...

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

 

14% helpful
sunshine390567 answered...

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?

 

50% helpful
eschandler answered...

I too have been trying to find what to expect in the last stages of MDS. Mom diagnosed last Nov after she admitted to ICU w/hemoglobin of 2. They gave her 6 pints of blood, many tests and lots of care and support as she decided to come with me to my home state, chose hospice and looked forward to heaven rather than continual transfusions or chemo. The internist suggested 40-60 days however the oncologist said she may have been living with MDS for years so her organs have adjusted. 8 months in a 24 hr care facility, 3 consistent meals and twice a week visits from me bringing fresh fruits/veggies and cod liver oil. Mid-May her hemoglobin was 4.8 all other blood levels "critical". Today she continues to say she is not in pain, however her kidneys are failing, she is swollen, pale w/dark red splotches on her hands and face (she wears long sleeves/pants so we can't see anything else), weak, mean spirited, short term memory loss/magical thinking, still walking slowly, much fatigue and is completely chilled. She won't allow hospice to take her vital signs. I'm not sure when to introduce her "comfort kit" since she is not bedridden, however she is so tormented and angry. Pretty incredible that she is still walking, talking, eating. I'm at a loss so your situations have been somewhat comforting since I can't seem to find answers. Thank you for taking time to write.

 

 
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