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Old Fri Oct 28, 2016, 10:46 PM
Marrowforums Marrowforums is offline
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Research Study Seeking Vietnam War-Era Veterans with MDS

Researchers at the Dana-Farber Cancer Institute and Brigham & Women's Hospital are recruiting 100 to 120 MDS patients who were presumptively exposed to Agent Orange (as defined by the Veterans Administration) between 1962 and 1975.

The goal of this study is to better understand the potential contribution of exposures in the Vietnam conflict to subsequent acquisition of MDS, a very important question that has been repeatedly brought up in these forums.

Study participation is free and involves filling out a short online questionnaire and providing blood and saliva samples at a local medical facility, using a kit that will be provided. The samples will be used for genetic study. You'll have to check with your local medical facility to learn whether they will charge to collect the samples.

If you want to learn of the study results, be sure to indicate that you want the researchers to contact you after the study.

If you are interested in participating in the study, or learning more about it, see mdsinveterans.dana-farber.org and review the FAQ.

To read the consent form and register for the study, click here.
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Old Tue Nov 8, 2016, 05:45 PM
Marrowforums Marrowforums is offline
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The study is being funded by the Aplastic Anemia & MDS International Foundation.

In their press release about the study, the AA&MDSIF quotes Dr. Seensma:
Tens of thousands of veterans who served in the Vietnam conflict were exposed to a toxic mix of chemicals, including dioxin in Agent Orange, jet fuel and other substances. These substances include known carcinogens that can injure bone marrow cells or cause DNA mutations. We have recently learned that to develop MDS, it takes multiple DNA mutations acquired over time, and so remote exposures may contribute to specific mutations in MDS in this patient population.
The press release also quotes AA&MDSIF CEO Kathleen Weis:
The Foundation has long recognized the special concerns of veterans who develop MDS. We've been hearing those concerns voiced for years at our patient and family conferences. By providing funds for Dr. Steensma's study of MDS molecular patterns, we hope to clarify how these vets contracted this life-threatening disease and resolve the issue for them, as well as for the VA.
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Old Tue Nov 8, 2016, 06:36 PM
bailie bailie is offline
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I wonder how they can produce specific results? There were a great many who smoked cigarettes during those years. In training we had "smoke breaks" (even if some of us didn't smoke) almost every hour. In Vietnam they packaged cigarettes with the meals. It will be interesting to see how/if they can separate the different causes. An interesting thing about the "smoke breaks" was that people could smoke but they couldn't chew gum.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Tue Nov 8, 2016 at 07:24 PM.
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Old Wed Nov 9, 2016, 07:11 PM
GoodDay5150 GoodDay5150 is offline
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Location: Centennial, CO
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I have a retired MD cousin who believes that behaviors such as smoking and drinking can poss contribute to MDS. But in the case of someone he knows that was transplanted for MDS, that patient had been treated earlier for cancer, and of course those treatments can cause bone marrow damage and failure later in life. Did my behaviors and exposure to chemicals contribute to my PNH? I do know that multiple types of cancer run in my family, but once again some of those that are now dead smoked and drank. One great uncle w/leukemia lived a fairly healthy life, but he worked w/ chemicals. In respect to Vietnam era vets, I have heard abt Agent Orange and other chemicals causing health issues for a very long time.

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Old Sun Jan 8, 2017, 08:53 AM
Marrowforums Marrowforums is offline
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More veteran participants needed

Dr. David Steensma and the other researchers have not yet reached the quota of participants for their study of veterans who were presumptively exposed to Agent Orange and later developed MDS. Their research is critically important to veterans and the MDS community.

If you may be eligible to participate, by filling out an online questionnaire and providing blood and saliva samples, please visit mdsinveterans.dana-farber.org and its FAQ, then click here to register for the study.
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Old Mon Mar 27, 2017, 04:27 PM
Marrowforums Marrowforums is offline
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Seeking ten more study subjects

Dr. David Steensma and his research team hope to find ten more veterans to participate in the study of the relationship between Agent Orange and MDS. Having additional participants will improve the value of the statistics gathered.

If you may be eligible and are willing to join the study, visit mdsinveterans.dana-farber.org and its FAQ, then click here to register for the study. No travel is required.
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