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  #1  
Old Fri Aug 26, 2016, 11:10 PM
rar rar is offline
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Va Denied Mds Disability Claim

I was diagnosed with MDS RAEB II 2.5 years ago. Just over 2 years ago I had a transplant. While the transplant appears to have cured MDS, I am still suffering side effects.

While in the ARMY (1958-1962) I was exposed to benzene as a cleaning agent as the company armor for about a year. My doctor says that it is as likely as not the cause of my MDS and wrote a letter to that affect. VA denied the claim. I am looking for arguments that would refute claims in their denial.

VA decision

1. Service connection for myelodysplastic syndrome (MDS)_(due to benzene exposure), Service connection may be granted for a disability which began in military service or was caused by some event or experience in service.

2. Service connection for myelodysplastic syndrome (MDS) (due to benzene exposure) is denied since this condition neither occurred in nor was caused by service.

3.The evidence does not show an event, disease or injury in service. Your service treatment records do not contain complaints, treatment, or diagnosis for this condition. There was no continuity of symptoms from service to the present.

4. Myelodysplastic syndrome is not considered a presumptive condition at this time, therefore we are unable to service connect it using the evidence available in your claims.
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  #2  
Old Sat Aug 27, 2016, 12:34 AM
Neil Cuadra Neil Cuadra is offline
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Ray,

The best evidence may be in the form of a statement from a respected hematologist.

For example, you could contact Dr. David Steensma (Dana-Farber Cancer Institute, Boston) to see if he has advice about ways to support your case. First, read or re-read his article Agent Orange, United States Military Veterans, And Myelodysplastic Syndromes.
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  #3  
Old Sat Aug 27, 2016, 10:44 AM
bailie bailie is offline
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Ray, I completely understand the uphill battle/frustration of your efforts. The only reason the VA classified me as 100 percent disabled was that I could put Vietnam, Agent Orange, stem cell transplant and leukemia in the same sentence. Until I could do that there was no consideration for my situation. I believe that I was exposed to more carcinogens from the "burn pits" than from agent orange. The only thing working for me was the blanket statement that covered everyone in country in Vietnam as having the possibility of exposure to agent orange. I don't have much in the way of advice for you and I apologize. It is very well accepted that benzene can cause MDS/leukemia, it gets "sticky" for the VA and the military personnel as to whether, or not, the exposure in the military was the cause. I have always understood it from both sides of the discussion. The situation is just not definitive enough to make the hard decision.

The explanation from Wikipedia illustrates the problem well from both sides of the discussion. It is very difficult to pin the benzene exposure to one experience because it is so prevalent in our entire lifetime.

Health Effect

A bottle of benzene. The warnings show benzene is a toxic and flammable liquid.
Benzene increases the risk of cancer and other illnesses, and is also a notorious cause of bone marrow failure. Substantial quantities of epidemiologic, clinical, and laboratory data link benzene to aplastic anemia, acute leukemia, and bone marrow abnormalities.[58][59] The specific hematologic malignancies that benzene is associated with include: acute myeloid leukemia (AML), aplastic anemia, myelodysplastic syndrome (MDS), acute lymphoblastic leukemia (ALL), and chronic myeloid leukemia (CML).[60]

The American Petroleum Institute (API) stated in 1948 that "it is generally considered that the only absolutely safe concentration for benzene is zero".[61] There is no safe exposure level; even tiny amounts can cause harm.[62] The US Department of Health and Human Services (DHHS) classifies benzene as a human carcinogen. Long-term exposure to excessive levels of benzene in the air causes leukemia, a potentially fatal cancer of the blood-forming organs. In particular, acute myeloid leukemia or acute nonlymphocytic leukemia (AML & ANLL) is not disputed to be caused by benzene.[63] IARC rated benzene as "known to be carcinogenic to humans" (Group 1).

Because benzene is ubiquitous in gasoline and hydrocarbon fuels are in use everywhere, human exposure to benzene is a global health problem. Benzene targets liver, kidney, lung, heart and the brain and can cause DNA strand breaks, chromosomal damage, etc. Benzene causes cancer in animals including humans. Benzene has been shown to cause cancer in both sexes of multiple species of laboratory animals exposed via various routes.[64][65]

Exposure to benzene
According to the Agency for Toxic Substances and Disease Registry (ATSDR) (2007), benzene is both an anthropogenically produced and naturally occurring chemical from processes that include: volcanic eruptions, wild fires, synthesis of chemicals such as phenol, production of synthetic fibers, and fabrication of rubbers, lubricants, pesticides, medications, and dyes. The major sources of benzene exposure are tobacco smoke, automobile service stations, exhaust from motor vehicles, and industrial emissions; however, ingestion and dermal absorption of benzene can also occur through contact with contaminated water. Benzene is hepatically metabolized and excreted in the urine. Measurement of air and water levels of benzene is accomplished through collection via activated charcoal tubes, which are then analyzed with a gas chromatograph. The measurement of benzene in humans can be accomplished via urine, blood, and breath tests; however, all of these have their limitations because benzene is rapidly metabolized in the human body.[66]
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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.
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  #4  
Old Sat Aug 27, 2016, 06:44 PM
rar rar is offline
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Here is the letter I was thinking of sending to Dr. Steensma. Any suggestions would be appreciated. Bailie, thanks for the references. It will give the VA something to waste their time reading. Their mind is already made up.

Ray

Dear Dr. Steensma,

The VA denied my disability claim for benzene as being likely the cause of my MDS. Text of denial at bottom. Debbie Pierson from the Fort Collins Veterans Service Office feels that I should submit a Notice of Disagreement. If you could find time in your busy schedule to write a letter that shows how benzene exposure is as likely as not to be the cause of my MDS. This would strengthen my case. I know it is almost impossible to find exactly what causes a particular case of MDS.

This means a lot to me. Here are some points that would help my cause that you may want consider and include in your letter:

Why you think my MDS might be related to my military service. Strength of link of benzene to MDS. Length of time between exposure to benzene and symptoms of MDS. It was the benzene in the gasoline used to dilute AO that is responsible for MDS. The lifetime care that I will require. GVHD.

I have read your article that explains why the disease may happen a long time after exposure and show no symptoms in the mean time.

Thanks for the help,
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  #5  
Old Sat Aug 27, 2016, 08:55 PM
Neil Cuadra Neil Cuadra is offline
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Ray,

That seems like the right approach. Be sure to include details of your exposure, illness, and the dates.
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  #6  
Old Sun Aug 28, 2016, 11:14 AM
PaulS PaulS is offline
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Hi Ray - i would not necessarily rely exclusively on the benzene exposure as being the source of the MDS - seems like there is maybe more traction in arguing that Agent Orange exposure as the source of MDS - at least from the VA's perspective - the burn pit exposure is also interesting - what was in the burn pits?

I'd craft the argument more as your service in Vietnam being responsible for your disability - including 1. Agent Orange - 2. Benzene and 3. Burn pits - its those factors either alone or in combination that gave rise to the disease....

I'd need a little more information regarding all your exposures to toxins while in he service - and am happy to help if I can -

There may be certain terms or events one needs to discuss that will trigger the VA to take action, as Bailie's experience seems to suggest...

Paul
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  #7  
Old Sun Aug 28, 2016, 01:40 PM
bailie bailie is offline
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Paul, the "burn pits" comment originated from me and I don't know if Ray was ever exposed to the "burn pits". We had "burn pits" on the firebases in Vietnam where everything was burned. We had no garbage dumps to take the garbage. Everything had to be burned in these pits including plastics, human waste, packaging material, used oil and everything else imaginable. These were not small fires. The smoke from these pits was always black and heavy. Our firebase was relatively small and exposure was difficult to escape. We would spend a week each month on the firebase for security and the rest of each month in the jungles. Even when we were working in the field we had to burn all excess/garbage. I feel certain that I was exposed to more carcinogens from these pits than ever from Agent Orange.
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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.
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  #8  
Old Sun Aug 28, 2016, 03:00 PM
rar rar is offline
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Hi Paul,
Thanks for the reply. I served 1958 to 1962 which the VA does not consider Vietnam era, other government agencies do. I was never in country. That is why I am trying to claim for MDS based on benzene. I realize it may be a bit of a stretch. Benzene exposure is among the more likely causes of MDS so I figure it is worth a try and the VA denial is not factual. Any help would be greatly appreciated. I am fortunate to have not seen service in Vietnam.

Hi Niel,
Attached is a summary of my Army service and my experience with MDS. I will attach as an foot note to the letter to Dr. Steensma. I would appreciate any further comments. Yes they are lengthy but I think it is relevant,


My military service:

I enlisted in he Army November 1958. I did basic training Fort Dix NJ. I was offered OCS and declined. I was sent to Army Security Agency School, Fort Devens MA. I completed Morse Intercept operator school and Radio Direction Finding School and finished Number 1 in my class. I was sent to Frankfurt Germany as a Radio Teletype Operator. I served that duty for about a year. I was then given the job as company armorer and served about a year. It was my duty to issue and retrieve arms for regular use, do minor repairs on all weapons, clean company issued weapons, and prepare for use replacement weapons. Minor repairs frequently involved cleaning replacement parts of their cosmoline. Cleaning was done on a regular basis and required various solvents. When the company switched from M1/2 Carbines and MI Garrand rifles to M14 rifles there were over 100 that had to be cleaned of hardened cosmoline. All this activity was done in the basement arms room whose only ventilation was the door that opened to the basement. Routine cleaning was done with gasoline and various petroleum based gun oils. For hardened cosmoline I was issued a sweet smelling solvent that I was told contained benzene. Safety precautions were different in the early 1960’s and I was issued no gloves or respiratory safety equipment. I was honorable discharged Feb 1962. As is frequently the case with cancer I did not show any symptoms of my MDS for many years.

A brief history of my illness:

Feb. 2014 a routine blood test was diagnosed as MDS so mild it would never need treatment. Apr. 2014 I was told I had MSD RAEB II. I volunteered for a phase 1 clinical trial of AG221. In 2 months blasts went from 14% to 2%. July 2014 received a stem cell transplant from my sister. Blood counts inproved and I was almost recovered. Oct 2014 ran a fever. I was admitted to hospital with C.diff, CMV, and GVHD of the gut grade III/IIII. After 2 month stay I was discharged with TPN in much worse condition than when I was admitted. I went for 3 months without being able to eat. I recovered slowly and by July 2015 my prednisone had been tapered to 5 mg. every 3 days. My doctors decided to remove me all my transplant drugs. A week later I came down with GVHD affecting my teeth, mouth, throat, eyes, and itchy rash from head to toe. I was put back on transplant drugs with 120 mg. prednisone. Pred was tapered slowly to 3.75 mg. in Jun. 2016. Sep. 2016 after feeling fatigued, dizzy, low blood pressure, etc. I was found to have adrenal failure attributed to pred over the past 2 years. I was put back on 7.5 mg. pred which had little or no improvement. Rash did heal in a couple weeks, other problems still exist with adrenal failure along with a number of skin cancers.
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  #9  
Old Mon Aug 29, 2016, 02:20 PM
bailie bailie is offline
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Ray, I want you to know that if there is anything I can come up with to help you, I will try. I just don't know if the frustration is worth your effort. I do understand that is a personal decision and not mine to make. I can understand the discussion from the VA point of view in that almost every person in the Army is/was exposed to benzene during their service. I believe that you were probably exposed much more than most with the different solvents, but it becomes so difficult to make a definitive line about the level for each person and whether, or not, the military exposure to benzene overshadows the exposure during the rest of a person's life.

This is just my opinion and feel free to disregard. I support your effort. I will always salute you for how well you have handled all of this.
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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.
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  #10  
Old Tue Aug 30, 2016, 09:32 AM
Data Data is offline
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Don't give up

Ray,
I would encourage you to keep the pressure on the VA to recognize benzene as the probable cause of your MDS. The VA does not require a doctor to say a particular chemical such as benzene is the cause of your MDS. The wording is the majority of claim decisions is “such and such is more likely than not to have caused the veteran’s disease”. Benzene has long been known to cause hematological diseases to include MDS and AML. If you do a Google search on “benzene, MDS, AML” you will find the Internet is replete with articles on studies done showing a positive association from well-respected doctors and institutions. There is recent evidence showing benzene has damaging effects on the blood below the US permissible amount of 1 PPM. In using it as a cleaning solvent in an unventilated area I think any reasonable person would have to agree that you were exposed to more than the general population.

There is another reason I would encourage you to continue pursuing your claim. A disability related to benzene exposure that occurred while you were in the service will make your spouse eligible for Dependency and Indemnity Compensation (DIC) if you should unfortunately die of MDS. DIC is a tax free monetary benefit paid to eligible survivors of military Service members who died in the line of duty or eligible survivors of Veterans whose death resulted from a service-related injury or disease.

I think the hardest part of your claim is going to be proving that you used benzene as a cleaning solvent in your job. I have no doubt you did but proving it is another matter. Other veterans in your same career field might be able to corroborate your claim. Did you have any manuals or directives that provided instructions on how to use benzene?

Again, I encourage you to pursue your claim. Although the VA does not use “case law” where the law is established by the outcome of former cases, I think a successful claim would encourage others in the same situation to pursue their claim.

Best of luck to you in your claim and your fight with MDS

Data
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