Does any one have any experience caring for a person with Myelodysplastic syndrome?

Eileen - my 86 year old mother was diagnosed originally with MDS, which then was changed to AML (leukemia). A research of information on this disease did not yield much information other than it is pretty grim, and is a condition (the AML, which is what the myelodysplastic syndrome tends to turn into). My mom was diagnosed in March of this year. She opted for chemotherapy, and chose the "lightest" chemotherapy that could be offered. Bone Marrow transplant was never an option. My mother was able to enter the chemo program because she was otherwise pretty healthy for her age - no heart, lung, etc problems.
In hind sight, I would never recommend the chemo for anyone of this age. You can search and search for information for treatments for this leukemia, and all the information I could find did not include people of your dad's and my mom's age - they are just way out of the range.
My mom got through three rounds of chemo. For some reason, after the third round, and one transfusion to raise her H and H, her oncologist ordered a Neupogen injection. She had a horrible reaction to the Neupogen, and that was the end of cancer treatment for her. She ended up in the hospital a week later, in intractable pain from the explosion of cells the Neupogen causes, and a very low H and H. She left the hospital 4 days later, went to a skilled nursing (rehab) facility, where believe it or not, she got stronger, was able to walk all over the place (with her walker), and was released home 8 weeks later. I had them hold her there as long as possible, because she lives with me, and I realized I was going to be her caretaker for the rest of her life.
It is now 12/14, my mom has stopped transfusions (she received 4, after the 4th one it did not improve her quality of life at all) - she rapidly went downhill, and is now on hospice. She has not really eaten in the past 2-3 weeks, is ghostly thin, but is pain free. She is expected to pass away peacefully here probably within the next week. This is a grim diagnosis, indeed.

Looking back, we should have blown off all treatments, taken her to Galveston for a last time, and gotten hospice involved sooner.
As a caretaker, I am emotionally and physically exhausted. My mom has had a caretaker since she got home from the rehab center, and its not cheap ($20 per hour)....but its ok because her helper is truly an angel from heaven. It has allowed me to keep working up till this week. I have been her caretaker for years, but the burden has really gotten out of hand these past few months.
In the past month or so, she has had little pain, mostly gradual weakening. She is pale right now, very very weak, bedbound for the most part, but just hanging in there. Hospice says she is one stubborn person.
Wish I could give you a more positive report, and this is only my own experience. I"ve done the best I could, hospice has been a huge help (especially their counselor, who has talked me off the ledge again and again), and I know when my mom passes in the probably near future, I've done all I could for her. She seems content and ready to go.
Be brave, enjoy him in the time he has, and who knows? I've known people who have had AML and have lived a few years,with alarming H and H levels -- but just kept on going.
May god bless you and your father. And like so many people often say on here -- get to hospice sooner rather than later. They're awesome.

There are different types of MDS: high risk, high-intermediate, low-intermediate, and low risk. The oncologist will do a work-up to determine where your father falls, and that will determine treatment options and potential for progression. Low risk usually does not progress to leukemia and the person is treated symptomatically (ie. blood transfusions, medication). People with low risk MDS can live 10-15 years with it; and at age 87, it is very likely, something else would take your father's life. Bone marrow transplants are not usually recommended for people of your father's age. High risk MDS is, as it sounds, a higher risk to progress to leukemia and carries a limited life expectancy because of the severity of the disease. So, first, find out what type of MDS he has.
You can expect a lot of fatigue and either 1 of 3 therapies on the market or blood transfusions. There really should be no need to worry about changing his living situation, as long as he can get assistance when the fatigue is bad. If you are dealing with high risk MDS, you may want to prepare yourself to look into hospice within the next year to assist with his care, as the disease could progress rapidly. Best of luck.

I believe you have access to the web since you have posted on the Agingcare.com site. May I suggest you enter the name of the cancer your dad has into the web browser and there will be ample information. One good site is at the Mayo Clinic but there are others as well.
I am so sorry for you and your dad as you go through this journey together. He is blessed to have you there for him.

My daughter had MDS and underwent a BMT (bone marrow transplant) with donor cells shipped to Buffalo NY from Germany. She got the cells on Jan 8th and now, Jan 27, her cell counts are coming up nicely. It's a very scary process with chemo and full body radiation with side effects. We expect her to be released from Roswell Park around Feb 1st.

My mother had vascular dementia and was diagnosed with MDS with 1 blast and refractory anemia in 2001. She lived a remarkable life. Because of her Dementia. She was Comfort Care only. The only treatment was Procrit every three weeks. I did take her for blood tests. She responded very well. She was 69 when diagnosed. Her Dementia did progress. My mother suffer from anxiety and acrophobia. I never planned at some point putting her into a nursing home. I worked in a long term facility that offered many service for 32 years. I spent the last 17 years working in Geriatric Research. I felt I had seen the worst things and the best thing that could happen to the elderly. I also worked on palliative care, hospice care, a big piece was quality of care. Which is making living in assisted living, nursing home care more like a home community. My mother enjoyed her life at home. I saw he decline memory, hygiene etc. 10 years had passed and I stopped working June 2010. I saw a physical decline. She was sleeping more. Lost of interest etc. January she took a bad fall and was sent to the ER where she has staple and sutures on top of her head. They did admit her to the trams unit. She was seen by her hematologist who told me the Procrit had stopped working. The second day I walked into the hospital and put her on hospice care. The following day all the equipment and bed came. I had also put a bed next to her, so I could be with her. She came home the following day. I had great help Monday-Friday 8 hrs/day. She was my right arm. My mother progressively got weaker and confused. She had some pain which was relieved with Morphine. She suffered from Chronic UTi's which did respond to antibiotics. Towards the end she wanted her 4 children together. We where all around her on a Sunday afternoon. She just smiled and was happy to have all of us together. After she just started to let go over 2 weeks. We knew the weekend she wouldn't make it through the weekend. She had discomfort. I gave her Morphine every hour and she was kept comfortable. She did have flash pulmonary edema. All I could do was increase her oxygen and morphine and keep her air way clear. This lasted for 35 minutes. 6 hrs she died. She was kept comfortable. July 17, 2011 she was 79 yrs. I have no regrets. I felt she was kept comfortable and died with dignity.

Many thanks for your response. Eileen

Good news, PS! Fingers crossed. She's in her mid 30's isn't she?

My mom was diagnosd with MDS four weeks ago. She has had two weeks of chemo and will have a platelett transfusion tomorrow. Her gums are swollen and bleeding along with tissue peeling off in her mouth. My mom went for her yearly check up and that is how we found out she had MDS. Her white blood count has gone from a .9 to a .1. Her plateletts are almost zip. How do we know when the end is near? She loves to play duplicate bridge and now she can't get out of bed.

SeekingHim, the end is near when their poop is bloody, dark brown then dark red, and the urine darkens to the color of coffee. You are on a rough road, ask all your friends to donate platelets or whole blood.

My mom had MDS for 10 years. But, she was diagnosed with the best kind. When the end is coming, Call Hospice they are great with palliative care. I had them for 6 months with my mother. I wish you well and will keep you and you mother in my prays.