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Old Tue Feb 9, 2016, 12:35 PM
Tommy Daniels Tommy Daniels is offline
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MDS - VA assigns diagnostic code 7725

February 9, 2016

I served in Vietnam from 1967 through 1969 in the IV Mike Force, 5th Special Forces Group. At times my unit was tasked with operations in enemy sanctuaries to include the Ho Chi Minh Trail in the Plain of Reeds. Many of the tree lines in these areas were defoliated by the U.S. presumably with Agent Orange (AO). For drinking water and that needed for dehydrated rations we depended exclusively on rivers and canals which of course contained the herbicides. It could be that oral ingestion exacerbated the dermal exposure.

In 2005 turning age 60, as a National Guard retiree I became eligible for Tricare For Life which gave me access to civilian medical care. In the run-up to shoulder surgery by a civilian doc (also in 2005), blood work revealed I had Anemia. Within a couple of months I was dealing with a Hematologist/Oncologist and two bone marrow biopsies diagnosed Refractory Anemia with Ringed Sideroblasts (RARS), one of the subtypes of Myelodysplastic Syndrome (MDS).

Prior to Tricare eligibility and having a combined VA disability rating of 80% for several wounds including 30% for PTSD, I went to VA annually for physicals. From 2000 through 2004 my VA blood work indicated Anemia. The VA doc's told me it was nothing to worry about but that I would feel more tired than normal.

After the MDS diagnosis by the civilian doc in 2005 I presented him with the above VA blood work. He opined that I probably had MDS when the VA diagnosed the Anemia in 2000.

Although MDS is not a VA presumptive AO cancer, in 2010 I filed a VA claim for it. Acute Myelogenous Leukemia (AML) is also not AO presumptive but there's roughly a 30% chance of MDS patients progressing to AML.

In 2010 there was no VA diagnostic code for MDS. Since part of my MDS diagnosis included "Refractory Anemia" and VA diagnostic code 7700 was for Anemia, I filed under it. As medical evidence for the probable relationship between MDS/AML and TCDD (carcinogenic dioxin present in AO) exposure my doc cited the 1976 Seveso, Italy chemical plant explosion. "Long term studies of those accident victims showed increased Myeloid Leukemia most notable after a latency in excess of 15 years."

My doc also stated,"... the data gives considerable weight to the supposition that MDS/AML is probably related to the Vietnam exposure to the Agent Orange military herbicide." And although VA Board of Appeals decisions are not precedent setting, I also cited a number in which DIC was awarded to widows of VN War vets who died from MDS and/or AML presumably due AO exposure. All of those vets were diagnosed with MDS in the latter 90's further supporting a very long latency period.

Within a few months and as expected, VA rejected my Anemia claim because it didn't occur within a year of discharge. In February 2011 I filed a Letter of Disagreement and chose the Decision Review Officer (DRO) process. In December 2012 VA notified me that my appeal was lost and to resubmit it, which I did a few days later.

In September 2014 and having heard nothing I sent a letter of inquiry to VA. A week or so later a VA rep called me saying that the MDS claim evidence I submitted was missing and to resubmit it, which I did.

In October 2014 I was awarded 100% service-connected disability for MDS due to AO exposure. The VA stated that since MDS is not one of the AO presumptive cancers the award was not on that basis rather because of documentation proving that I was a ground combat vet and medical evidence from my doc.

But because VA still didn't have a diagnostic code for MDS, I was assigned the most analogous one which was 7703 - Leukemia. The complete code assigned me was 7799 - 7703; apparently the first four digits 7799 is a "catchall" prefix for illnesses or injuries which have no specific code.

In November 2015 while at an annual physical with my VA prime care doc, she told me VA now has a diagnostic coded specifically for MDS which is 7725.

RE treatment I've had, since around 2007 I've been giving myself weekly injections of Aranesp to boost blood cell production. When that was no longer helping, in 2011 I tried Revlimid chemo in a clinical trial but I was allergic to it and had a brief bout with Stevens-Johnson Syndrome, stuff you definitely don't want. Around June 2014 I began chemo with Vidaza and am still on it with modest but less than expected improvement.

At the below URL is an August 2015 VA proposal in the Federal Register for additional VA diagnostic codes and disability ratings for the Hematologic and Lymphatic systems. If you'll search for "Myelodysplastic Syndromes" you'll see that diagnostic code 7725 is proposed for MDS; that section in the document explains the three levels of MDS disability awards based on MDS type and treatment. Since my VA prime care doc told me this past November that MDS was diagnostic code 7725, obviously the August 2015 Federal Register proposal was enacted.

I'm guessing that the aforementioned MDS-favorable decisions by the Veterans Board of Appeals relative to AO exposure in Vietnam, as well as the increasing number of VA claims for MDS, finally has the "right hand talking to the left."

https://www.federalregister.gov/arti...phatic-systems

Hope the above helps.

Tommy Daniels Savannah, GA <kouprey@earthlink.net>
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Old Tue Feb 9, 2016, 04:18 PM
bailie bailie is online now
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That is interesting Tommy. I filled out the VA forms and sent them in about two months ago just out of curiosity to see the reaction. I had MDS (RAEB-2), a stem cell transplant and recurrence to AML. I have had 17 cycles of Vidaza, three cycles of Revlimid. I was in the jungles of Vietnam (small arms infantry 1970-71 with Bronze Star). I was flatly/immediately turned down by the VA.
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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),12 months Vidaza and dasatinib. Now(SCT-Day+910) Hgb 13.1, RBC 4.03, WBC 9.9,Plt 175,Neut. 6.73, no leukemia, BCR-ABL mutation(Q252H), no blasts, 100%donor. On Vidaza and ponatinib.
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Old Mon Feb 15, 2016, 10:35 AM
Keri Anne Keri Anne is offline
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Spoke to Brian Lawrence Chief, VASRD Regulations Staff

Good Morning!

I spoke to Brian Lawrence Chief, VASRD Regulations Staff 2 weeks ago, his contact information was on the proposal that you are speaking of. Mr. Lawrence informed me this proposal had been recalled and sent back for review. Not sure what needed to be reviewed since there are several codes being added.

I am so happy for you that you received your entitled benefits. As for the rest of us DON'T GIVE UP! I was able to obtain a Nexus letter for my husbands MDS/AO relation. Praying I get the same outcome as you.

Blessings!
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Keri Anne, widow of Tom W. age 63; dx Myelodysplastic Syndrome 10/26/11; Rec. Aloe at Audie Murphy SA, TX 5/12; passed 10/23/12;.
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Old Sun Jan 22, 2017, 04:08 PM
Tommy Daniels Tommy Daniels is offline
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Quote:
Originally Posted by bailie View Post
That is interesting Tommy. I filled out the VA forms and sent them in about two months ago just out of curiosity to see the reaction. I had MDS (RAEB-2), a stem cell transplant and recurrence to AML. I have had 17 cycles of Vidaza, three cycles of Revlimid. I was in the jungles of Vietnam (small arms infantry 1970-71 with Bronze Star). I was flatly/immediately turned down by the VA.
Baile, did your claim include a supporting statement from your MDS physician that minimally said your MDS/AML is "as likely as not" (or a higher probability) due to herbicide exposure in RVN? If so, did your doc also cite a supporting scientific study such as that done after the 1976 chemical plant explosion in Sevesco, Italy which showed increased myeloid leukemia in those exposed to the fallout? If you didn't provide evidence such as the latter two, no wonder your claim was turned down. While I provided those doc's with my initial claim, it too was turned down but on DRO appeal it was approved at 100%.

RE Revlimid, I tried it in 2011 but it back-fired and gave me Stevens-Johnson Sydrome, bad stuff I'd only wish on the NVA and ISIS.
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Old Sun Jan 22, 2017, 04:51 PM
bailie bailie is online now
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Tommy, my experience was interesting. I filled out the questionnaire on VA eBenefits and didn't hear anything so I thought it must have been dismissed. At the same time I went to a local VA representative (who wasn't very well informed) who told me I wasn't covered. It wasn't much more than a week after my post above that I got a notice from the VA for an appointment with a VA doctor to evaluate my situation. This was from my eBenefits application.

I went to the appointment and the doctor was terrific. I had a four inch thick documentation of my situation (all of my appointments and results) which was very organized. She looked at my information and made copies of what she was looking for and after 30 minutes we were finished. The next thing I got was a notice of 100 percent disabled and compensation dating back to the day I filed on eBenefits which was three months previously.

The VA doctor never contacted my oncologist/hematologist. I never had to write any letters or have my doctor write any letters. My information spoke for its self. The key to my 100 percent disable classification was using Vietnam/agent orange/stem cell transplant/leukemia into the same sentence. If one of those items was missing I wouldn't have fit into the VA criteria.

The interesting thing about the whole thing was that my only real purpose for contacting the VA was to get my situation into the VA database so the accumulation of data might be beneficial for everyone. I was not looking for any compensation.
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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),12 months Vidaza and dasatinib. Now(SCT-Day+910) Hgb 13.1, RBC 4.03, WBC 9.9,Plt 175,Neut. 6.73, no leukemia, BCR-ABL mutation(Q252H), no blasts, 100%donor. On Vidaza and ponatinib.
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