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What can I expect in end stage MDS?

8 answers | Last updated: Mar 20, 2015
npmadsen asked...

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...
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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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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.



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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?


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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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An anonymous caregiver answered...

I have been pouring over the internet looking for someone to give me some idea as to how my mother's last days with MDS will be. I haven't found the answer.....I promise to share my experience when the time comes. I hope it will give someone else the peace of mind that I cannot find. All of you are in my thoughts and prayers.


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An anonymous caregiver answered...

I too have been pouring over the web trying to find help with late stage MDS "expectations". I assume the many variables make setting expectations difficult, but there is much common ground to build from right? My Father is entering rural-home hospice care as his decline is escalating. After 4 months of weekly transfusions Hemo and Platelets, the transfusions no longer provide a visible difference. I expect them to end very soon by MD recommendations, and palliative care only to begin within a week or 2. I would like to know what that means for Dad. Not just time-line but cognitive and comfort concerns. I also will post experiences for others benefit.


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An anonymous caregiver answered...

Last week I promised to post our experiences for late stage MDS expectations. 2 days later my Father suddenly passed on. We engaged with hospice about 6 weeks after the Oncologist recommended we consider Hospice care. The delay was to keep Dad's attitude more positive. (We had valid concerns he would mentally stop fighting.) The day struggling with mobility began we engaged hospice. Though he had been on weekly transfusions for 2 months, Dad had little complaints about pain. On day 1 Hospice recommended ensuring his comfort and immediately began administering morphine. We never had communication with him after that first administering of pain meds. We lost him 24 hours later. This does not mean pain meds was a bad plan. I just recommend understanding what that could mean for goodbyes. I believe his heart was giving up and fluid was entering his lungs. So even though it seems a steady decline may continue, our loved one can pass very quickly and bring shock. Prepare yourself with daily reminders that external indicators don't tell the whole story. It is impossible for our competent medical team to predict how many days/ or weeks you have left. The variables make this a truth we must accept.


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