Is MDS terminal…

[Theresa]

Hi…firstly just wanted to say thanks for the advice on my last posting…after further reading other posts on this site, I’m just wondering if MDS will in the end cause a premature death. Never has my father been told this, only that a person with it is more likely to get leukemia. Could you give us any advice please.

My father isnt doing too well in hospital at the moment. As you know he went in originally through developing sudden epilepsy but now the blood is the main issue. He Hmg levels cant seem to get over 7.0 despite daily/2 daily transfusions and his platelets have been fluctuating between 20 and 80…despite also transfusions every couple of days.

[lindajo]

Unfortunately the answer is yes. It generally isn’t considered to be terminal, but it causes the immune system to be impaired. Patients often die actually from another condition and MDS is listed as a contributing factor. Those conditions are often heart problems, pnemonia, flu,etc.

I am sure this isn’t what you wanted to hear but I feel it is easier to get the truth. Try and not worry about when he will die, that could be a long time, worry about making the time you have count.

[Caroline]

Theresa,

Lindajo is correct. MDS is an underlying factor in alot of deaths. But…don’t let that stop you from having hope. I have a Microbiologist living next door to me who ran the Blood Bank at a hospital for several years and now teaches blood related courses at a large Medical University. I asked him the same question as yours when my Dad was diagnosed with MDS. He told me the same thing that Lindajo explained. He also added that if a person keeps their immune system healthy, they can live a long life. He told me that he has typed blood for lots of patients who are in their 80’s and 90’s and have had MDS for over 20 years. The secret is in keeping the immune system and the spirits healthy.

Dad’s Oncologist told us the exact same thing.

My Dad’s MDS transitioned into CMML this past summer. He is at a low spot right now because his kidneys are not functioning properly but I am sure that he will rise above it again. He has 4 doctors working with him at the moment putting things in running order again.

Keep praying and learning Theresa. Knowledge is power with this disease.

Blessings,
Caroline

[Sad About Dad]

Yes. How long who knows. When my dad was first dx they told him to get his affairs in order that he would not last another 6 months. He looked as healthy as a horse. That was in March 2003. The doctors forgot to tell him not to drink alcohol. He died two years later from leukemia and alcohol.

I am so Sorry. I know this is heart breaking. I have cried almost everyday of my life since my father was dx. It is painful to watch someone you love suffer so greatly.

[ButchL]

I know in my wife’s case, they never told us that. Call me naive but we went into it thinking a bit of treatment and life would go on. It wasn’t until after the fact that I learned the life expectancies and such. I know each individual is different and some go on and on. Some respond to treatment, some don’t.

As far as I am concerned, if you give up, you will lose the battle. Fight it and you have the best chance you can give yourself. Learn as much as you can, communication is key with your doctor. Just keep up the fight…..

[Neil]

Hi Theresa,
It is difficult to determine how long a MDS patient will survive.
How old is your father now?
How long has he had MDS?
Is he considered high risk?
What is his blast level?
Is he subject to sinus infections, bronchitis, pneumonia etc?
A low HGB/RBC can put a strain on a patients heart.
Has he ever tried Procrit or Aranesp to boost his red cell counts?
Has his WBC, particularly neutrophils been very low? Neupogen might help WBC.
Lots of factors to consider.
I have had MDS for almost 9 years. A friend has had it for over 15 years. Others have not been that fortunate.
It is very important that he is being treated by a hematologist experienced in treating MDS. It is also important that he is being seen by an internist also. MDS can cause some nasty problems with various organs when counts get very low. They must stay on top of his health issues that could be a result on MDS.
MDS is seldom the cause of a patients death, but the effects on other organs is usually the cause.

[Author]

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