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What can I expect in end stage MDS?

10 answers | Last updated: Apr 17, 2015
npmadsen asked...

Dad is 94 years old and has severe myelodysplastic syndromes (MDS). He seems as if he is really failing now. We are transfusing him with red blood cells, just as a comfort measure. His white blood cell count is falling and is now 0.7. His absolute neutrophil count is 182 and his platelets are now the lowest they have been at 24,000.

We are now just having his blood drawn at home and when they're low we'll just bring him for a transfusion, as he gets great pain when his hemoglobin falls to 7.0.

What can I expect as a caregiver at this time? I am amazed he has not developed a severe infection or hemorrhaging, only some gingival bleeding this past Sunday. How long can this go on for and what symptoms will he likely experience?


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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Dan Tobin, M.D. answered...


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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18% 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.



18% 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?


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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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peaceseek 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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Caregiver 5 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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Caregiver 5 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.


Brynn answered...

My mom is end stage MDS. It has been a nightmare. Diagnosed in October 14, however, reflecting on past behavior and declining health believe It's been going on for over 2 years. All the same symptoms, the meaness is obviously the most painful as a caregiver. I have been caring for her, by myself even though my 3 siblings live within 5 miles of her home, while I live 900 miles away, for the past 6 mos. I pray she has a peaceful and painless transition. We are now awaiting the hospital to release her back into my care with the aid of hospice in the next few days. Unfortunately I had to go home 2 weeks ago to deal with my own life and within 4 days she was back in hospital. Any lesson to be learned, if this is your parent and you love your parent then help care for your parent and don't leave all the decisions to one sib, especially one who lives far, far away. I had to put I. Hold my own life, my marriage and my children to do this. I am exhausted, overwhelmed and a little angry and disappointed, my siibs still think its the hospitals fault and don't accept for one second that mom has cancer. Sorry this has turned into a Vent, wasn't my intention, but then that is dealing with grief. Praying mom dies with dignity, without pain and has comfort surrounded by her children who are all finally accepting without denial.


Jvalentine52612 answered...

I lost my grandmother 2 days ago to MDS. She had a very long drawn out battle with this disease and it wasn't easy on any of us as her caregivers. She was taken on by hospice on April 9th and passed away on April 15th. Within the last 2-3 months it got to the point that she was too weak and tired to get out of the house much. My granny also had afib which could have played a large part there but with her not able to get out meant no doctor appointments so we called in hospice. During this last month her "death process" began. She started seeing things and people that weren't there. She didn't know her own house on other days. She quickly went downhill; quit eating except a small bite here and there. She had very little water and even got to the point she was to weak to drink from a straw on her own and became completely bedridden within the last 3 weeks and that led to muscle deterioration including her heart bc she wasn't up and around and working that particular muscle. The last week and a half I told my family that they needed to say their goodbyes as I knew she was getting close to ending her journey. She got to the point that she wasn't interested in talking and couldn't comprehend what we were saying and the communication stopped all together. My grandmother was done she had lived a joyous and full life and was just plain tired and ready to go. This past week on Tuesday I got the call while at work which happens to be my granny's oncologist and hematologists office that I my mom needed my support bc granny was going downhill very fast. It seemed that things that were supposed to happen over a period of days or even weeks was happening over hours and I believe that was due to her MDS. On Tuesday she had bedsores showing up and opening within hours of appearing! She had already started mottling due to her being bedridden and it being difficult to move her around bc of the pain she had. We did the very best we could to keep her comfortable those last two days. The morphine helped her breathe easier and didn't have to gasp and struggle for each breath also helping ease her pain. After the first probably 2-3 doses of morphine she slipped into the "death coma". Meaning she would not be coming back...this was it. We didn't move from her bedside for those last 24 hrs. It was extremely painful to watch her body go through that process. The gasping for breath was just a horrible thing to see and hear but we couldn't do a thing about it. Overnight on Tuesday her breathing continued to get more shallow and her eyes clouded over and I knew then she was gone and that her body just had to finish the dying process. On Wednesday morning around 9:00am she was breathing like a fish out of water not inhaling any air but just making the movements. Then came her last TWO bowel movements and the inside if her mouth had started cracking and bleeding due to it being so dry even with us sponging it for her for two days. Eventually an hour later at 10:41 she gasped for the last time and I watched the vein in her neck stop pumping. She had passed on. Even though I knew she had what I call "ghost eyes" and mentally her brain had pretty much quit working the night before and was supplied with very little oxygen that her sweet spirit had already went it's a totally different punch to the gut when the heart and lungs stop. I apologize if this was tmi for some but I wanted to share my story and not sugarcoat it. For those that have asked what they can look forward to...well for me this was it! 24 hours of fighting and could last longer or shorter for some. All we can do as families and caregivers is just talk to them and tell our loved ones that it's okay to go and keep them as comfortable as possible. I hope this helps some of you and others it may not. Just know that I'll be praying for you as you all start this end of life journey with a loved one.