Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello. I was diagnosed yesterday, with serious MDS, I have the biopsy results, but have not categorized them, but it shows 11% or 3% blasts and some chromosome damage. I am due to go into hospital Thursday or Friday ( my blood counts are stable enough to allow me a couple days to take care of some business) and I am told I will be in for around four weeks. A 7 / 3 day chemo regimen (I have the chemo names downstairs) and then to see if the marrow grows back right. I imagine some of you have gone through this protocol in the past. I need advice on:
1. How to cope for four weeks in the hospital, what to do? Coping strategies?
2. What can I expect in terms of how I feel? Are you awake enough to read? Work on laptop?
3. What is your lifestyle post treatment? The Doc is uncertain about post treatment protocols, it will depend on response.
Background: male, 65, lost my wife to pancreatic cancer in October. Semi-retired systems engineer, OK financially and with health insurance (Medicare Plus through a Federal Retirement, plus Navy retirement). Daughter, an adult, lives at my house in northern Virginia ( came home to support her mother's illness), son and DIL and 2 grandkids in Albuquerque, and SIL in the same town. So I have family support.
Advice?
What can I expect?
I also posted this on the new member thread.
Thanks,
Kirk
1. How to cope for four weeks in the hospital, what to do? Coping strategies?
2. What can I expect in terms of how I feel? Are you awake enough to read? Work on laptop?
3. What is your lifestyle post treatment? The Doc is uncertain about post treatment protocols, it will depend on response.
Background: male, 65, lost my wife to pancreatic cancer in October. Semi-retired systems engineer, OK financially and with health insurance (Medicare Plus through a Federal Retirement, plus Navy retirement). Daughter, an adult, lives at my house in northern Virginia ( came home to support her mother's illness), son and DIL and 2 grandkids in Albuquerque, and SIL in the same town. So I have family support.
Advice?
What can I expect?
I also posted this on the new member thread.
Thanks,
Kirk
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I have Myloedysplasia and have been treated for 1-1/2yrs. with Dacogen every 28 days for 5 days. I've done very well and lead a
very normal life styel. After so many treatments, I'm now having a problem getting my white counts up. My doctor said, he would like my counts to recover on there on own, I'm praying this happens. Not sure what happens if they don't, I guess they will have to try a different medication. White counts fight infection so I have to be very careful not to get sick. Other then that, I feel great, play golf
and have a wonderful life. I hope and pray you will get to that point.
My MDS was found very early and every case is different. I think you should be able to read and use your computer while you're in
the hospital. Just try to keep a good attitude and be very careful
not to catch anything when you get home. Wash your hands...a lot!
I wish you health and good luck. Sorry I could'nt give you much help
but I just wanted to say take one step at a time.
All the best,
Pat
They are lookingntomtry two more trying
Transplant. It appears to be working, albeit slowly, bringing the counts to a more nominal set of numbers. The pre transplant biopsy showed 5 to 10% blasts (down from 9 to 15%).
What long term effects do you get? I get a little nausea in the morning after eating breakfast and sometimes after larger meals. I get sleepy fatigue. I used to get it right at the end of chemotherapy week, but now days of sleepy fatigue are spread across the cycle. Also I get nauseous but not throwing io, after breakfast
I try to walk 2 miles per day, slower when I am with my dog. Without him I jog ( he is 12 and doesn't. Always want to go.) I continue to sail my boat.
I work quarter time also.
Are you able to travel? I am planning on going to Albuquerque to see my grandkids after October 1 chemotherapy.
Where do you live? Who do you have for family. How do you decide what you want to do day by day? Do you have a list?
Thanks for posting, Kirk
I live in Southern MD and go to Geo Wash Univ Hospital. Not sure where I am in the risk factor but sure have a list of questions to ask when I see the doc on Sept 22.
So glad you are able to walk/jog. I haven't had the energy for it, however after my 2 units last week I may have the energy for a few weeks anyway. I may just give it a try this morning, it's a beautiful day in MD. Have a great week.
As I mentioned earlier, I have a lot of questions to ask my doc next week. Best of luck to you.
My best to you.