Mds and hereditary?

[Walden’s wife]

My husband Walden was dx in Feb. 2003, died in Sept.2004. The original dx was MDS RARS which became AML in Mar. 2004. He was 73. In Nov. 2004 46 year old son Chris was dx with AML. The main connection was that they both had exposure to benzene in the workplace. Another son, Tim age 44 also had the exposure (they all work/worked for Federal Government). Tim had complete bloodwork recently and will follow up with it. Chris is getting chemo with hope of beating this monster. I do not see this as heredity. Marie

[Cherbear]

My 25 year old son, Jason passed from AML in November 2003. I was diagnosed with CMML/MDS in June 2004 and am going to the same doctor that my son had. He thinks there might be a genetic link and referred us the the hospital’s genetics department. My surviving son has a low normal platelet count as he was the stem cell donor for his brother and had his blood thoroughly tested many times during 2003, when he tried to donate platelets.

The link also might be environmental, and that’s under investigation by the Ohio Department of Health presently.

There seems to be so much unknown about the causes of MDS. I just hope someone finds out why this happens.

[andrzej g.]

I found some interesting information on genetic predispositions to develop MDS/AML. Though the disease doesn’t seem to be heritable, some factors may influence MDS susceptibility. There are many intracellular enzymes involved in chemical mutagen detoxification which prevent the DNA from being damaged. Deficiency in these enzymes seem to heighten the risk of MDS. Some of these enzymes have been identified. That raises the hope that chemoprevention may modify disease risk in the future.

A specific childhood mds form (monosomy 7 syndrome) seems to be heritable at least in a way.

[tahoedonner]

Suzanne….

I have noticed the same thing regarding numbers of people on this forum. Many who get the diagnosis probably don’t have access to a computer or are turned off by all the hugs and kisses stuff on this site! I did the math ….if only 10,000 are diagnosed each year with MDS in its many forms, and many of them have a plethora of other ailments, while 250,000 are diagnosed with breast cancer and get much better treatment results and publicity, I can see why MDS is a much neglected disease. There are only a thousand or so people registered on this site and most are not too active. Considering the mortality rate re MDS , I would guess that many of those who post to this site are relatives and not actually folks who have MDS.

Considering the fact that the medical community gives MDS folks the usual six to eighteen month prognosis and sees Vidaza as a treatment and not a cure for even for a very small number of MDS folks, there is no pool of customers for expensive drugs or for the research to find them.

My recent seven day 5-AZA (Vidaza) required two $30 Anzemet pills per day and a back-up $90 “antiemetic cocktail”…both of which worked great…before even factoring the cost of the Vidaza.

I hope that the results will be worth it all and will let you all know how it turns out!

[KP2112]

Hi,

I have read in a few journals of medicine that MDS can either be hereditary or develop from exposure to certain toxic chemical agents. I think both are feasible explanations in regard to getting MDS. On the one had it is genetically profiled in a person’s makeup. On the other hand, your body absorbing chemicals on a regular basis and that being transported through your blood and seeping in bone marrow also seems logical.

What I can’t put my finger on are instances where MDS is not genetic and there has not been any regular exposure to toxins, how do chromosomal abnormalities develop or form? Perhaps there is a predisposition to MDS is these instances?

Kind Regards,
Karen P.

[Naomi]

Karen:
Did you ever think about cigarettes? These also have some of the chemicals that are thought to cause MDS (i.e. benzene, formaldehyde, ammonia, are a few). This could be the cause that many do not even think of and if you are predisposed, as you are saying, and exposed to cigarette smoke even if you do not or did not smoke it could easily be the cause.
It is something to think about.
Naomi

[shirlsgirl]

Hi Naomi,

Certainly something to consider. My mom smoked for many years.

Jody

[KP2112]

Hi Naomi,

I believe that cigarette smoking, in the first person, could potentially cause MDS. However, I would have to tread lightly on trying to put together a link between second-hand smoke and MDS. When we are talking about exposure to toxins, the journals have indicated it is something that happens over a extended period of time with constant exposure like working with gas, solvents and fertilizers. I don’t think second-hand smoke falls into this category, but I may be wrong. We are all learning what we can and trying put all our stories together in the hopes of finding some answers.

Kind Regards,
Karen P.

[KP2112]

Just another thing I was thinking about, statistically speaking, men acquire MDS in far greater numbers than women (I can’t think of the % off the top of my head). This is significant because during the last 40-50 years men have had the jobs where there was a greater chance of exposure to toxic chemicals. I think there is definately a link here.

Kind Regards,
Karen P.

[gemloyear]

Years ago while attending a medical seminar at the univ. of minnesota the key note speaker ( in reference to feelings of guilt) stated that no one should feel guilty of having an illness,aquired or hereditary as every one in the audience carried the potential of 20 genetic abnormalties in their dna.One Doc. said that long term enviormental exposure could cause these changes. i’m not sure if the medical community still feels this or not, it is something to consider.I believe my husband has been exposed to every chemical imaginable, it would be pretty diffcult to track. I guess the best we can do is to take care of our health as well as possible.It would be great if we all were scientists and could find a cure, but the one person I think that will is Andreiz.

Good luck with the research,Ellie

[gemloyear]

Andrzej , I do appreciate your postings. You have prompted me to do further research on my own. I can’t say that I understand all of it, but it does help.Some of the more interesting sites are in the N.I.H. web site, Understanding cancer series: The Immune System, it gives an explanation of your ref. to enzymes re: DNA.Keep up your excellant postings.
We hope that your dad is doing well with his treatments.

Ellie

[txnmomma]

I have wondered the same thing about MDS and being hereditary. My father has it and I wonder about myself at times.

Is this a certainty that he got MDS b/c he was exposed to something in the area where he lives? Does this mean, I can be exposed equally.. and get MDS from being exposed not necessarily being hereditary.

[andrew]

Hi there

My mother has recently been diagnosed – at the age of 68 – with MDS 5Q- we have looked back at every death in her immediate family (grandparents, parents, uncles, aunts) and no one seems to have had any blood related disease, in fact not one case of cancer out of twenty or so people. On the contrary she comes from a family of long livers – her mother and grandmother reaching well in to their nineties before they passed away – so the hereditary theory seems fairly weak.

[Suzanne]

Again, I was told at hopkins that they have found no genetic link and that my children and grandchildren did not need to be nervous or tested or anything.

[Author]

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