MDS but how?

[rahulmathur9]

Hi, I am just curious as to how does a patient get MDS.

Is it arbitrary?or is there no answer?

My dad is 52 years old and has lived as normal a life as anyone can imagine. No ailments no nothing. Not even small problems. Then all of a sudden because of some personal problems at home, my dads eating habits go out of the window and he stop eating properly for around 3months. We at home unfortunately did not realize this.

Can someone get MDS from not eating properly for 3 months?

i know this is a silly question. but still!

[Zoe]

I don’t think not eating can cause it. Never heard that. Often the cause is unknown. Some potential predisposing factors are benzene exposure, and previous cancer treatment.

Looks like your dad droped from 12% to 4% blasts. That is good.

What type of chromosome damage does he have? It should be listed on the bone marrow biopsy. Often it is listed on a seperate page though because the chromosome analysis takes longer than the other tests.

There are many treatment options besides transplant. Although he is young enough for a transplant if it is called for.

Zoe

[rahulmathur9]

Hi,

he has large scale chromosomal damage, almost 50% are damaged. Not sure exactly which ones, but i am sure the 5q is damaged.

What other treatments can we look at?
As of now all docs I have spoken to have recommended a BMT only. We dont have a match yet. Obviously i would like to try something else before a BMT. He has been out of hospital for over 3 months and has not required a single transfussion.

[Zoe]

Revlimid has shown positive results with 5q- however, there are many other meds also. Others are more familiar with when they are used. 5q alone is not a terrible diagnosis, combined with other damage it is more challenging. That, by no means, means that there is not hope. There is always hope.

Is your dad at a Center of Excellence? Or at least someone who is familiar with MDS? That is very important.

Zoe

[jga_socal]

Regarding the cause of MDS. Someday I hope some organization will develop a method for thoroughly interviewing people with no-known-cause diseases. I feel that if the lives of these people were thoroughly analyzed and recorded in a database, some kind of similarities in environmental factors could be seen that might help solve the mystery.
For instance, what if reports revealed that 44% of people that contracted MDS used a certain shampoo? Or 64% of the people had diets deficient in potassium? Or 49% experienced some kind of emotional upheaval (divorce, death in family, etc.)?
It may be a shot in the dark. But without a full analysis of the environmental factors in peoples lives around the time they contracted some obscure disease, who knows if there is a predictable causality? :-))
There are so many chemicals in our lives these days, I often wonder…

[rahulmathur9]

My dad is currently in India and in good hands there. But I am constantly in touch with doctors at the fred hutchinson center in seattle. If need be he will be taken to seattle.

[jga_socal]

Rahul,
Good for you and your Dad to have started a dialog with the Fred Hutchinson center.

[Author]

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