What can I expect in end stage MDS?

18 answers | Last updated: Nov 17, 2016
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?


Expert Answers

Dan Tobin, M.D. is the CEO of Care Support of America, a national service providing telephonic and local nurse counsel to adult children caring for aging parents. Dr. Tobin is the author of books and articles focused on the practical and positive aspects of family caregiving.

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


Community Answers

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

 


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?


Ladyjustice answered...

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


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.


A fellow 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.


A fellow 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.


A fellow 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.


A fellow caregiver 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.


A fellow caregiver answered...

My grandfather has this condition. Thank you all for sharing here. And thank you jvalentine52612 for your words and offers of prayer. God bless you all. Fay


Mandabecky answered...

I am telling my story in the hopes that it may help other families living or dealing with the progression of MDS. My 77 year old father also has MDS and has been in Hospice Care for 6 days. He was diagnosed over 2 years ago and was having transfusions every week and a half. During this time he developed an itchy rash on his skin and after months of trying different creams from the Dr. The skin doctor decided to put him on a dose of Prednesone. By my fathers next visit to his MDS doctor, the doctor was baffled as my father's numbers had not gone done since the last transfusion and stayed that way for over 8 months. They couldn't explain it but the Prednesone was our miracle so we thought and bless for the clear year we spent without treatment just check ups. Fast forwarding 2 years..... About 6months ago My father wasn't feeling well and had some test done. Hes numbers at the time had started going down a little but still being managed. He was told he had a 90% heart blockage and ended up having bypass surgery. Thank god with a transfusion the blood count was still holding. After the surgery he was released to rehab where the hole in his leg where they took out the vein or whatever it was called for the bypass, became very infected and leaking. The surgion sent him home with this infection and a general antibiotic. This didn't work and he got worse and was admitted to the hospital where along with antibiotic treatment, they tested his blood levels after 3 months focus on the heart and not his MDS. His numbers were down and his MDS Dr. wasn't sure after this lapse if we could get lucky again with rest and prednesone. The infections healed and we were left dealing with MDS and healing from heart surgery at home, numbers down and not coming up. About a month later which is about a month ago. He began not feeling well again and was admitted to the hospital where they found his white cells very low and he was sepsis with another blood infection this time and no way to fight it. They tried a 7 day shot which was supposed to boosed his white cell count and it worked a little but not enough to fight the infection. They gave hime platlets and had to put a tube into his Gallbladder because they saw stones and sludge and it needed to be drained because his blood counts were to low to survive surgery. After a couple of complications and back and forth between rehab and the hospital and transfusion and strong antibiotics almost daily. They gave the family and my father the talk. Nothing they were trying was working although the infection in his blood had finally cleared, the transfusions weren't working anymore and to do more evasive tests to find where the infections stems from, my dad had had enought. He was tired of getting polked and prodded and being in more pain and set back after each one and not getting anywhere and because his white cells were so low, even if they did all the testing and he survived, he was open to new and all infections. He decided on his own with his family around that he wanted to stop treatment and blood therapies and move to Hospice care where he will still get a general antibiotic and thats about it besides the "comfort meds".
So here we are, last Friday they moved him to another floor in the hospital with just oxygen. His counts all pretty low at that point for blood counts over all. They couldn't tell us how long only things to expect and what meds they were going to give him. As a family we felt like getting family around we were playing beat the clock... and my father was coming to terms with his passing.
Surprisingly, my father has been doing better then he has in months. He's awake and alert and drinking on his own. We just wish he would eat more. When his pain level which is only in one area of his uper stomach which could be discomfort form the Gallbladder tube. They were giving him a low dose of Morphine 1 or twice a day as needed. The past 3 days he's been assisted to move and even sit in a chair and spend this quality time with family. We don't know how long this with last because we don't know where his counts are now, but other then bedridded weakness and a bit tired, he gerally feels ok. We are on day 6 and holding. The only issue we've seen in these past days and if there is any advice I can give from my recent experiences with Hospice care is know your family member, know they day to day habits and routines and how they function, because what you may be told is the "next stage" in passing may actually be over medicating which is robbing you and your loved one from spending quality last days. My father's pain which he is being given Morphine for comes and goes and is not chronic, at least not yet. Because he was asking for the Morphine for the pain in the morning in his stomach, the doctors decided to schedule it then ask his pain scale. He was only getting it when pain was between 7-10. I stayed over night with him 2 nights ago and found this new order out when they gave him two doses at night and first thing in the morning without asking his pain scale. I asked and it was at 0 and they still wanted to give it to him. When I questioned it, they then asked him if he wanted to hold off or take it and he was still in lalla land from the previous dose he couldn't make a clear decision and said yes. That morning he was very out of it and confused and speaking about strange things not recognizing his room... A hospice care working came in about 9am and saw this behavior telling us it was what they had said to expect. Now I was there over night and saw his behavior and being clear till they started this regulary morphine regiment. It was no stage.. Please if you have a family member in Hospice what for these signs. If the pain worrents Morphine for comfort then fine do what is needed. But in this case he was given Morphine when it wasn't needed just because it was ordered. If we weren't aware of this, we may have believed it was the next phase and agree to an another increase that may have taken my father sooner. Thank you for reading my story and would love feedback if anyone would like to email me. Sometimes it's comforting and helpful to hear others stories.


Mandabecky38 answered...

Update to the story of my 77 year old father. My father passed away 4 days after my first post. He was in Hospice for a week and a half. I am so thankful for the 6 days of clarity and good days we shared with my father and talking with family and friends at his bedside reminiscing. To be honest as I watched the morphine drip go in and begin it's increase over 2 days. I struggled a lot with ethics and being a caregiver by nature, wondering if Morphine was always the right answer at that point in time or was there some other way, a natural less harmful way of treating his pain in his final days. Maybe we would have more days of clarity. But then I questioned my own feelings and was it selfishness to keep him here, when he was not himself or having the quality of life he was used to. When his breathing began to labor and I saw how uncomfortable he was, I saw the need even though it was hard to say the words. After the drip was put in, that evening he went into a deep sleep and we didn't get to speak with him again. About an hour before his passing the nurses who were wonderful through it all, came in to turn him and he opened his eyes and began to try and move his arms. He couldn't speak but with all the family that was around, I believe he wanted us to know he heard us and was still there. Family and friends began to depart and just my mother, brother, uncle and myself along with my boyfriend were sitting with him when his breathing became gasping, as said above like a fish out of water. My 12 year old son who loved his grandfather came in the room and wanted to be there in his final moments. We held my fathers hands and told him all the things that needed to be said. I will be honest. This was not easy to watch and I can only pray that with my beliefs, he had already left his body and it was only his body shutting down. And then he was gone. This bright strong presence in my life, in the life of my family was gone. I sit here writing my story thinking back on that moment and find peace because he is now at peace and would be happy to know that his story was told. The one thing my father kept saying while in and out of hospitals and rehabs and doctors offices, was that nobody really understood the disease and what he was going through and that people need to be educated more about this disease, because those who live with it, the warriors the survivors need the support of those around them to fight for them when they are to weak. And know how important it is to stay on top of. Know your patients, wear gloves and sanitize because you may be opening up someone to infections they can't fight. Take the time to read and educate.
Feel free to email me if I can help from a daughters/caregivers point of view. mandabecky37@gmail.com


A fellow caregiver answered...

It's March 1st (just barely 12:52am) so glad I came across this site, my 93 year old gpa just went on active comfort care on Friday... He begged us for a suicide pill. His transfusions stopped working 1 1/2 weeks prior to Friday the 26th... We knew then it was time. I expect anytime this week he will take his final breath. Being a medical professional I just want his suffering to end, however we are also battling with a gma who has Alzheimer's. We're pretty exhausted helping her thru this. We knew this time would come thou. I appreciate your stories.


Kimberleybev8 answered...

Moms being treated for Mds after a fall in October doctors have been giving her blood and platletts She's at hospital twice a week for one or the other it's a lot for an 82 year old she just so tired off it all


Kathleen christensen answered...

I am as devastated as everyone of you. I have watched my 68 year old very athletic, healthy husband of 40 years deteriorate at a rapid pace. Diagnosed in late August 2012. Over 4 years, some family history and sadly smoked 40 years, benzene buildup. Hospice quite soon. Horrible, devastating disease.


Rocky mountain girl answered...

My dad is 78- He was one of the most healthy and active men that was around... in the Navy and an Umpire most of my life (I'm the oldest of 4 at 52) -- they first started watching this disease over 5 years ago- but didn't tell him until it was time to start thinking of chemo- he started on Vidazza - which did the job - for the most part this past 2 years - until about 6 weeks ago when his platelets would not come up. so we started with the platelet transfusions about 1x per week- then he got a booboo on his ankle that would not heal and in turn got infected and landed him in the hospital- we are now on round 3 of hospital stays and this time his levels are not coming up- he was at 11k this am - and even with 2 bags of platelets he went down to 9k. He is combative and angry. he is refusing his pills and thinks that the drs are trying to kill him. which is a huge change from this afternoon when I saw him and he was looking good and in good spirits. It took all 4 of his kids on the phone some of us in different states, my daughter and the youngest sister in the room begging him. this was a 4 hour process to get him to take 4 pills. All I can say is that it was totally exhausting. This decline has progressed so rapidly. He has been complaining about intermittent pain throughout his body - saying that it is his bones that hurt- they are supposed to be doing another bone marrow biopsy on Monday am - (this is Sat pm) I am not sure that it is going to help, or give us any answers that will make a difference at this point. the morphine they are giving him is making him loopy and he can't have anything else because of liver and kidney enlargement from the anemia and chemo. I wish any one who reads this the patience that God gave his saints.


Rocky mountain girl answered...

UPDATE- So we brought him home on hospice care almost 2 weeks ago- They found 2 brain bleeds, both on the left side, and were pretty sure that his MDS had moved into Leukemia - the Dr's said- they would be surprised if he was still here in a month - and even more surprised if he was gone in days - more like weeks! When we brought him home ( via ambulance) it looked like it would be days - - but he got in the house and said- I want pizza and a chocolate shake... and there was this new man- even tho when we left the hospital his platelets were at 10 - and so the days have gone - our biggest issue has been at nights and the pain- mostly in his legs, weakness and the confusion - we have had a few AWFUL nights , but for the most part he just needs to get up and pee. The biggest question he has, all the time, is what is happening to me?? We are upfront and honest with him about what is happening. So we are waiting for the proverbial shoe to drop, as they warned us that there would be a "rally" . Thank God for lots of family and the friends who come to visit daily to keep his spirits up. We actually had to create a social calendar for him- so that we would know when people were coming - as to not tire him out too much. But he is getting tired quicker and he sleeps more. I wish that there was more information out there on this disease, I appreciate all the postings on here ( as I have read them more than once) I will keep posting - because I believe that knowledge is power and we are all wanting the best for our loved ones. XO