MDS and Thirtysomethings

[jeanswear]

I notice that theres not many people in my age group with MDS. Is there a certain age group that it is more prevalent in?

[Neil]

MDS usually hits older people.
A few below 50
More in their 60s
Even more in their 70s
some in their 80s
Younger people with bone marrow failure seem to have Aplastic Anemia. It is treatable and many are cured. Some transform to MDS.
Some in their 20s, 30s and 40s are candidates for BMTs or SCTs and are cured. The success rate for BMTs and SCTs goes down with age so us older folks are forced to use supportive care and/or the limited drugs that are available.
The consesus is MDS is most often caused by exposure to chemicals (benzene), pesticides, herbicides etc.—excluding secondary MDS. It takes a few years for the marrow to deteriorate after exposure, thus the impact on older folks.
Not sure how the docs explain how younger patients get it. Could be heavier exposure over a short time of perhaps life style changes along with genetic issues that have yet to be studied/confirmed/explained. Future generations might have more cases develop per year than we have in the past. I can think of events in my lifetime that might account for my situation.
While in high school I worked in a couple gas stations. Washed grease off my hands with gas, breathed gas fumes etc. Lived in a flight suit with fire retardant chemicals for 8-10 hrs a day while in the Navy. Spent 27 years in the plastics industry and was exposed to benzene frequently. Was exposed to chlorodane in the late 60s before it was banned. Add them all up and it becomes pretty clear why I have MDS.

[Dennis]

I’m a “young” 52, er, 53, and was diagnosed last year. To the best of my knowledge, I’ve never been exposed long-term to benzenes, etc — but as a newborn had radiation treatment over my pelvis.

Dennis

[jeanswear]

I only ask this because I noticed someone on here with MDS that is 35 yrs old. Was just wondering.
Thanks

[Suzanne]

We have seen a few young people and even a child or two.

[TandyB]

My husband is 30 years old and was just diagnosed with MDS. We are waiting for a bone marrow donor. They talked about putting him on Vidaza, but changed their minds they hope to have a donor within the next 3 months and they want him to stay as healthy as possilbe. I guess Vidaza lowers counts? They say it is very rare for someone his age to get this and can’t explain how he did. He has the genetic abnormalities of Trisomy 8 and deletion of 7.

[Dennis]

Tandy,

You may want to take another look at Vidaza. I’m waiting for a BMT, too, but the donor search has been difficult. My Onc started me on Vidaza on my first followup after my diagnosis, and the stuff has been a lifesaver. No transfusions in six months, relatively normal life (except for the shots).

Even if the plan is a BMT, if they don’t have the donor in hand, if your husband needs vidaza, they should give serious thought to using it.

Dennis

[SimonChai]

Tandy: All MDS patients are supposedly different, but I had a very good result from just one round of Vidaza. However, I took it along with Enbrel, the drug usually used for rheumatoid arthritis, as part of a clinical trial at Fred Hutchison Cancer Research Center. My counts never actually dropped the way the doctors thought they might.

[Amanda Sosebee]

Hi. I am a 26 year old female with MDS (RAEB). I was diagnosed this past September after having a horrible case of Sweets Syndrome (often associated with MDS) which scarred my face because the doctors had no clue what was going on. One ER doctor told me I had bad acne.

I am on here looking to find others in my age bracket to talk with.

What is this Vidaza I have read about? I am being treated at MD Anderson which is supposedly the best place for cancer treatment in the whole world and I have never heard of it.

I am undergoing round 5 of 7 rounds of chemo using Idarubicin and Cytarabine. I was on a clinical trial using those combined with Zarnestra, but I took myself off of the Zarnestra because I felt it had too adverse of side effects for me personally.

Good luck to everyone.

[JAGGYONE]

Amanda,

It seems that MDS knows no boundaries – age or otherwise.

I think I can speak for most everyone here (where age doesn’t matter) when I say that you will find a whole world of new friends willing to help in any way they can on this forum.

You’re young and strong so please stay hopeful and believe (with all your heart) that better days are in store for you.

I wish you the best of everything.

Judy

[jeanswear]

Hi all,
Sorry that I havent been around. Been dealing with the emotions of losing mom. Amanda, might I ask if you have/had any prolonged contact with benzene or dyed fabric? I think thats what caused moms MDS since she worked in a sweatshop. I would reccomend eating a whole pineapple a day. I would also say to drink Noni juice. I can tell you more about that if you want. My uncle (no blood relation to mom) was diagnosed with Multiple Myeloma and since he started eating a whole pineapple a day and 2 ounces of noni juice, his blood counts have been stable. Mind you, I am not a doctor nor do I profess to play one on tv. Good luck with the illness. I hope you have someone there to help you with things. You can email me if you wish.
Thanks
Beb

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