Is MDS a family disease?

[Snuuze]

I'm brand new to the Forum. Diagnosed in June with MDS and began treatment with Revlimid this week. My dad had MDS 20 years ago, back when the only treatment was a transfusion. Possibly my paternal grandmother had it as well. Younger brother is still clear but being checked regularly. I've read that it isn't a hereditary disease, but am wondering what others' experience with this has been.

[Dick S]

As far as I know there is no evidence that it is hereditary.
As I understand it the three main causes are exposure to benzine, chemotherapy from cancer related diseases and plain old age. There may be other minor ones.

[Chirley]

Hi, I recently attended a meeting with other MDS sufferers and every single one of us had grown up in the country or on farms. I thought that was a huge coincidence.

Chirley

[Birgitta-A]

Hi Snuuze,
Nobody in my family has had any kind of blood diseases but almost all have had different kinds of cancer. I have lived in a city with much traffic my whole life but when I meet other patients with blood cancer in the hospital they often live in the country without traffic but perhaps with open fires and different toxic substances like insecticides.
Kind regards
Birgitta-A

[Greg H]

Originally Posted by cme01

Hi, I recently attended a meeting with other MDS sufferers and every single one of us had grown up in the country or on farms. I thought that was a huge coincidence.

Chirley

Hey Chirley!

There's a mention of exposure to benzene and possibly other problematic substances among farmers in a lecture on the epidemiology of MDS, etc. at a recent AAMDS conference at the Fred Hutchinson Cancer Center in Seattle.

Here's a link. It's the first video at the top of the page.

GReg

[Marlene]

Thanks for posting this link. Very informative.

[Greg H]

Hey Marlene!

My pleasure. A lot of those lectures from the Seattle conference are very worthwhile. The only complaint I had was they didn't leave enough time for Q&A. But, still, the material covered is really great.

Greg

[ann]

Originally Posted by cme01

Hi, I recently attended a meeting with other MDS sufferers and every single one of us had grown up in the country or on farms. I thought that was a huge coincidence.

Chirley

Hey Chirley,
The growing up in the country hit home. My husband was raised on a farm but also we lived in the Beaumont, Port Arthur areas of Texas that has many chemical plants and refineries. He is a bladder cancer survivor and we always thought the bladder cancer might have been from breathing the air there. His urologist does a landslide business in that area with cancers of the bladder. Henry was in the building material business and the lumber, etc were treated with chemicals. Just can't win for losing!
ann

[Chirley]

Hi,

Yes I grew up on a sheep and cattle station (ranch) in outback Queensland.

I used to play in an old sheep plunge dip that had previously had arsenic and other chemicals used in it. DDT was also the rage back then and we were told it was so safe you could drink it and I remember the salesman doing just that to demonstrate it's safety. I shudder to think what other chemicals were used as we always had grain crops growing as well as lucerne hay fields.

When we moved closer to the coast, we had a small farm and just had lucerne hay, sometimes canola and sunflowers. The farm next to us used to rent out their paddocks to big companies for experimenting with GM crops. They also did a lot of crop dusting which invariably landed on our roof and we used to depend on rain water from the roof for all our water supplies at the time. Who knows what the chemicals were.

After that we moved to the east coast and my parents managed a large poultry farm. In between batches of chickens (every 8-10 weeks) the sheds had to be sprayed with formaldehyde. Once again we depended on roof rain water for all our water use in the house (the farm used dam water) and I'm sure that it was always contaminated with the formaldehyde.

If all that wasn't enough, when I was in my mid to late 20s I worked for a nuclear imaging company and it was my job to inject the radio active isotopes for all the patients. Nuclear imaging was in it's infancy here and safeguards weren't as good as they should have been. I was never given protective clothing or had a radiation counter.

Who knows....maybe I was just going to get this anyway.

[Birgitta-A]

Hi Greg,
Thank you very much for the link to the conference at the Fred Hutchinson Cancer Center! Very interesting.

Hi Chirley,
You have really been exposed to more toxic substances than most people - then you have a very special MDS disease too starting with neutropenia during a long time though your immune system functions very well.
Kind regards
Birgitta-A