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MDS Myelodysplastic syndromes

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  #51  
Old Tue Dec 28, 2010, 01:05 AM
RETAIRFORCEMAN RETAIRFORCEMAN is offline
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Agent Orange Herbicides On Guam

I wanted to let all of the forum members know that I prepared, mixed and hand sprayed agent orange herbicides on Andersen AFB Guam and off base air force fuels facilities for ten years from sept 1968 to Jun 1978. I have ischemic heart disease, first exposure diseases of chloracne and sterility upon first handling the herbicides, autoimmune diseases, rheumatoid arthritis, spinal stenosis, anklylosing spondiolitis, osteoporosis, psorasis, peripheral neuropathy, and possible other neurological disorders...with paralysis of my left side...arteries dissected and torn during angioplasty rotorooter..etc..contact me at retairforceman@aol.com and contact web master of http://www.guamagentorange.info/home we have requested a DOD IG INVESTIGATION why the truth was not told to us. I have Air Force documentation and eye witnesses of when I sprayed agent orange on Guam
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  #52  
Old Tue Dec 28, 2010, 11:38 AM
RETAIRFORCEMAN RETAIRFORCEMAN is offline
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Guam Agent Orange To Gerry T.

GERRY T., PLEASE CONTACT DOUG KELLEY AT ourrose2002@sbcglobal.net .....He sent me an email and wished to talk to you about Guam and Agent Orange herbicides which he also was exposed to. He knows about me handling and handspraying it there. He worked in base supply and did inventory on the drums of AO at Andersen AFB.


From Doug Kelley,

LEROY SEND ME THIS MANS E-MAIL AND I WELL EXPLAIN HIM THE FAXS OF LIFE DOUG

--- On Tue, 12/28/10, RetAirForceMan@aol.com <RetAirForceMan@aol.com> wrote:


From: RetAirForceMan@aol.com <RetAirForceMan@aol.com>
Subject: this guy doesn't even know he was exposed to AO on Guam...oh my!
To: rstanton@stjoelive.com, MPaxton@nas.edu, ourrose2002@sbcglobal.net, josephmchale@ymail.com, W6stringer@aol.com
Date: Tuesday, December 28, 2010, 4:53 AM


Gerry T.
Member Join Date: Jul 2010
Location: Texas
Posts: 2

VA Benefits

--------------------------------------------------------------------------------

I may be a little slow but for 20 yrs I did my job and retired in 82. Since then I have been dx first with type 2 Diabetes, then Heart Problems, and two years ago "Pre Lukemia" now they say MDS unclassified... My question is: I was never exposed to Chemical Agents that I know of. Never spent time in Viet Nam.. the closet was Guam.. Do I put in a claim to the VA to see if it can be determine if any of my assignments exposed me to chemical hazards... Thanks GT
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  #53  
Old Tue Mar 29, 2011, 07:18 AM
Bob Macfarlane Bob Macfarlane is offline
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VA willing to do whatever it takes

I doubt they will print this but it was just sent to the editor of the Chicago Tribune.

http://www.chicagotribune.com/health/agentorange/

Your series on Agent Orange was very interesting and I wish I had known about it earlier.

Betrayed is hardly the word we use to describe ourselves. I have myelodysplastic syndrome (bone marrow cancer) caused by Agent Orange.

That it not my opinion, that is the ruling of the Board of Veterans' Appeals in Washington DC. Yet, the Department of Veterans' Affairs found a lung cancer expert, Dr. Michael Kelly, at Duke University to opine that mine is not malignant. Result? No compensation for an incurable and fatal form of cancer closely related to Multiple Myeloma.

That it is cancer is the opinion of the VAST majority of the medical community involved with the disease – just today an expert on MDS from Mayo Clinic told me that “Of course, it is cancer and there is no such thing as a benign cancer.” A MDS expert from Harvard Medical told me "To say it is not malignant is bizarre." A MDS expert from John Hopkins has told me "They are playing word games." Lest I forget, it is also the opinion of the National Cancer Institute and the American Society of Hematology that MDS is cancer.

Your article (Part 2 'Insult to injury') refers to disability claims as a “convoluted” process – that makes me laugh. The process is more akin to Alice falling into the rabbit hole or a Steven King novel. Nothing about it is real. I see now though that my biggest sin was to have gotten this disease and not have gone to West Point with Secretary Shinseki.

Vietnam veterans are 14,000+% more likely to get MDS than the general population (FOIA report from the VA) and the VA continues to delay, deny and hope we die (they also lie.) Why? Disability accrues to the veteran and not our survivors. We have the audacity to die and the VA wins.



Bob Macfarlane
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  #54  
Old Tue Mar 29, 2011, 11:46 AM
Neil Cuadra Neil Cuadra is online now
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At the Veteran's discussion and workshop at the Phoenix AA&MDSIF conference last Saturday we heard from Vietnam-era vets, not just with MDS but with aplastic anemia, and we heard about the vets exposed to Agent Orange where it was being prepared and stored, not just where it was applied in Vietnam. We also heard how Agent Orange (contaminated with dioxin) was mixed with chemicals like benzene, also linked to bone marrow failure, and how barrels used for Agent Orange were reused for water storage without sterilization (that's also mentioned in the Chicago Tribune article).

The frustration with the V.A. continues. For vets who have not yet applied, the advice we heard was to make the initial application as strong as possible, with all supporting evidence provided up front. That's proven to be more successful than waiting to be rejected and providing more evidence in an appeal. Of course that doesn't help those who area already stuck in this process, some for years. And approvals and rejections still seem haphazard, with one vet approved for benefits while another with the same exposure at the same location and time with the same resulting illness being rejected.

The next update to the "presumptive illnesses" list will be in 2012 and it's still going to be an uphill battle to get MDS added.
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  #55  
Old Tue Mar 29, 2011, 07:52 PM
Bob Macfarlane Bob Macfarlane is offline
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Presumptive

Neil,

I truly expect the Institute of Medicine to recommend to the VA that MDS / AML, if not all bone marrow failure diseases, be added to the presumptive list. I expect that to be much sooner than later.

I also requested of the IOM that they specifically define MDS as what it is, a cancer, so that the VA would have no wiggle room.
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  #56  
Old Sat May 21, 2011, 07:39 AM
Bob Macfarlane Bob Macfarlane is offline
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In case you missed this one

If this does not turn you stomach, nothing will.

Same disease, same cause. Approval from the VA? In a matter of days!

The difference?

http://www.chicagotribune.com/health...,2356181.story

He went to West Point with Shinseki.
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  #57  
Old Thu Jun 23, 2011, 12:22 PM
Bob Macfarlane Bob Macfarlane is offline
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Small victory


Small victory but you win ball games one run at a time.

Hi Bob-

Sue got a call today from someone at the Tampa VA. He told her he was ordered my Scty. Shinseki to pull Paul's file, hand deliver it to his doctors for updates and then Shinseki would review the file. The Tampa rep. told Sue they would be contacting her within 7-10 days with a decision! She asked why they decided to do this & he said it was a result of the letter I e-mailed to Shinseki! Wow! Thank you, Bob, for suggesting I write him. I really can't believe it worked.

The Tampa guy seemed a bit shocked that he had been ordered to do this, telling Sue it was "being fast-tracked & it was totally against protocol & that these things normally take years."

Sue told the Tampa rep. that they were going to Moffat tomorrow to find out if Paul was still eligible for the transplant. I hope that doesn't muddy things up for the disability benefits decision...but of course Sue & Paul would give anything for a cure. Paul has been a bit better lately; he hasn't needed blood transfusions for a week & a half. He still has the pnemonia & has to be transfused with anti-fungals for that, though.

Sue said she'd call you if & when they get the disability approval. Paul says he'll believe it when he sees it.

I couldn't stop smiling today. Thanks again, Bob!

Diane
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  #58  
Old Wed Jun 29, 2011, 03:46 PM
Bob Macfarlane Bob Macfarlane is offline
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Useful link

Finally a doctor that is willing to call it what it is. Words do have meaning to some.

MDS, Blood Cancer...

http://www.sciencedaily.com/releases...0426182000.htm
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  #59  
Old Sun Jul 3, 2011, 10:49 AM
Bob Macfarlane Bob Macfarlane is offline
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Widow letter to Shinseki

Names and claim number removed to protect the widows privacy:

Sec. Eric Shinseki, Department of Veterans' Affairs

Dear Sec. Shinseki:

On September 29, 2010 The Department of Veterans Affairs denied my request for dependency and indemnity compensation (DIC) for the death of my husband, COL. Mxxxxx Xyzxyzxyz. VA Claim#?????????????????. I disagreed with their decision and sent in a Notice of Disagreement (NOD). To date, I have not had a decision on my appeal.

I understand that you have interceded in the usually very time consuming request for compensation to the Department of Veterans Affairs for one of your West Point classmates and that his claim was successfully processed in a short time. (Chicago Tribune, Dec.2006)

I would like to also request your help in processing the claim I have put in to the Department of Veterans Affairs.

My husband was not a West Point graduate, but he was a 30 year career officer, he taught at the Academy for 5 years, and both my oldest son and my son-in-law are graduates. Another son was a ROTC graduate. Maybe that’s enough to earn your help.

The following is a short synopsis: My husband was exposed to the Agent Orange herbicide because of his service in Vietnam during 1969 to 1970. Additionally, he was in Quang Tri in the 75thSupport Battalion of the 5th Infantry where the component chemical supplies for napalm were received and combined. Benzene is one of the components of napalm, which was used extensively in fighting the Viet Cong in the Quang Tri area.

In May 2005, the McGuire Veterans Hospital in Richmond, VA confirmed Mxxxxx’s bone marrow malfunction, and Myelodysplastic Syndrome (MDS)was diagnosed. To date the V.A. Agent Orange list of acknowledged cancers does not include MDS.

Between May 2005 and September 2009 my husband was treated at the V.A. Hospital in Richmond, VA for MDS, which progressed to Chronic Myeloid Leukemia (CML) and then to Acute Myeloid Leukemia (AML.) Complications from the AML finally took his life on 30 September 2009.

Please ask the Philadelphia Regional Office to quickly return a favorable decision on my request for DIC.

Thank you,

Lillian
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  #60  
Old Sun Jul 3, 2011, 10:55 AM
Bob Macfarlane Bob Macfarlane is offline
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Blood cancer

This should be of interest to those of you are war with the VA:

http://www.newswise.com/articles/con...ancer-syndrome

Remember, even if you win at the region or before the BVA, they are going to try to call MDS anemia. Anemia unless you went to West Point with Shinseki or are a congressman.

In addition to Matsui, other notable public figures who have died from MDS include Congressmen Joseph Moakley (D-MA), former presidential candidate and Congressman Paul Tsongas (D-MA), and scientist Carl Sagan.



Last edited by Bob Macfarlane : Sun Jul 3, 2011 at 10:58 AM. Reason: Add paragraph form article
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  #61  
Old Mon Jul 4, 2011, 01:50 PM
triumphe64 triumphe64 is offline
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Here is another article in Blood claiming it is underreported.

http://bloodjournal.hematologylibrar...7/26/7121.full
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  #62  
Old Fri Jul 15, 2011, 11:15 AM
Bob Macfarlane Bob Macfarlane is offline
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Request sent to National Cancer Institute

Robert James Macfarlane, Sr.
16611 SW 49th Street
Southwest Ranches, FL 33331-1325
954-232-7190
AirAmrka@aol.com


June 18, 2011

National Cancer Institute
Public Inquiries Office, Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322

Dear Sir/Madam,

From your website http://www.seer.cancer.gov/about/ I read that:

SEER collects data on cancer (emphasis mine) cases from various locations and sources throughout the United States. Data collection began in 1973 with a limited amount of registries and continues to expand to include even more areas and demographics today.

Would you be so kind to explain to me, in writing and over signature, why the National Cancer Institute collects data on Myelodysplastic Syndrome? Certain government agencies only consider MDS to be a pesky form of anemia, which might turn into cancer.

Yet, the majority of the medical community considers not only AML but also MDS to be a diagnosis of cancer.

Words do have meaning and I would like to know if MDS (not AML) should be considered anemia or cancer. Would also like to know, if it is not cancer, why is the NCI using taxpayer money to collect data on anemia?

You may forego the explanation of “pre-leukemia.” That term is one of the biggest disservices ever placed upon MDS patients. It has allowed insurance companies and government agencies to deny coverage and/or compensation for years.

If necessary, just notify me and I will be happy to submit this as a Freedom of Information Act request.

Respectfully,



Robert J. Macfarlane
RCMD-RS

Last edited by Bob Macfarlane : Fri Jul 15, 2011 at 11:32 AM. Reason: color
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  #63  
Old Fri Jul 15, 2011, 11:19 AM
Bob Macfarlane Bob Macfarlane is offline
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NCI Response --- Bureacratic BS

07/14/11_56618PIQ

Thank you for your letter to the National Cancer Institute (NCI) regarding myelodysplastic syndromes (MDS). In your letter, you asked whether MDS should be considered anemia or cancer. You also asked why the NCI collects data on MDS if it is not considered cancer. The NCI, a component of the National Institutes of Health (NIH), is the Nation's principal agency for cancer research. The NCI is responsible for coordinating the National Cancer Program and for maintaining our momentum in cancer research. We hope you will understand that, as a Federal Government research agency, the NCI is not involved in the classification of diseases. However, we can offer information that you may find useful.

MDS, also called preleukemia or smoldering leukemia, are a group of diseases in which the bone marrow does not make enough healthy blood cells. MDS transform to acute myeloid leukemia (AML) in about 30 percent of patients after various intervals from diagnosis and at variable rates. For information about MDS, you may wish to refer to the "PDQ® Treatment Summary for Health Professionals on Myelodysplastic Syndromes." This summary of information from PDQ, the NCI's comprehensive cancer information database, provides information about treatment for myelodysplastic syndromes. This resource is available at http://www.cancer.gov/cancertopics/p...ional/AllPages.

In your letter, you asked why the NCI's Surveillance, Epidemiology, and End Results (SEER) program collects data on MDS. As part of the NCI's mission to develop effective prevention, early detection, and treatment approaches for cancer, the NCI is interested in precancerous conditions and other risk factors that may lead to cancer.

According to the SEER program, in most cancer registries, the reportable tumors are those that are listed in the International Classification of Diseases for Oncology, Third Edition (ICD-O-3), which have a behavior defined as in situ or invasive. Tumors that are reportable to SEER include those that are classified as in situ and malignant. This information can be found on the SEER Behavior Recode for Analysis Web page at http://seer.cancer.gov/behavrecode/. According to the "SEER Cancer Statistics Review, 1975-2008," myelodysplastic syndromes and chronic myeloproliferative disorders were reclassified from nonmalignant to malignant in the ICD-O-3. These diagnoses became reportable for cases diagnosed in 2001, when ICD-O-3 went into effect. This information can be found in section 30 of the SEER CSR at http://seer.cancer.gov/csr/1975_2008...ect_30_mds.pdf.

To view the PDF above, you must have Adobe® Reader®. If you do not have this software, a free download is available at http://get.adobe.com/reader.

If you have additional questions regarding SEER's MDS data, you may wish to contact the SEER program directly. SEER staff can be reached at:

Address: Cancer Statistics Branch
Surveillance Research Program
Division of Cancer Control and Population Sciences
National Cancer Institute
Suite 504, MSC 8316
6116 Executive Boulevard
Bethesda, MD 20892-8316
Telephone: 301-496-8510
Fax: 301-496-9949
E-mail: seerweb@imsweb.com
Web site: http://seer.cancer.gov

Thank you for writing.


Deborah Pearson, R.N., M.P.H.
Chief, Public Inquiries Office
Cancer Information Service
National Cancer Institute
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  #64  
Old Fri Jul 15, 2011, 11:30 AM
Bob Macfarlane Bob Macfarlane is offline
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In your face -- my response to the bureaucrat w/copy to the NCI Director

I very specifically asked if MDS should be considered anemia or cancer. In the selected paragraph from your response, it seems that while "the NCI is not involved in the classification of diseases" you are indicating that MDS is a precancerous condition . Where does that classification come from?

Is it anemia, pre-cancer or cancer? If you cannot answer that question, who can answer?

Please supply a straight forward answer this time --- Vietnam veterans dying of MDS/AML do not have time for a slow dance or double speak. My letter was mailed to you on June 18, 2011 --- 2011 not 1984.

Allow me to supply you with a few facts before you blow me off again with bureaucratic minutia:

From the National Cancer Institute
http://www.cancer.gov/cancertopics/t...oproliferative

Definition of myeloproliferative disorders*: A group of slow growing blood cancers, including chronic myelogenous leukemia, in which large numbers of abnormal red blood cells, white blood cells, or platelets grow and spread in the bone marrow and the peripheral blood.

*NCI listings of myeloproliferative disorders contains:
http://www.cancer.gov/cancertopics/t...tive-disorders

Myelodysplastic Syndromes Includes refractory anemia, refractory anemia with excess blasts, refractory anemia with ringed sideroblasts, refractory cytopenia with multilineage dysplasia, unclassifiable myelodysplastic syndrome, and myelodysplastic syndrome associated with del (5q).

American Cancer Society

“Definition of myeloproliferative disorders: A group of slow growing blood cancers, including chronic myelogenous leukemia, in which large numbers of abnormal red blood cells, white blood cells, or platelets grow and spread in the bone marrow and the peripheral blood. “

Leukemia-Lymphoma Society (LLS)
http://www.lls.org/diseaseinformatio...sticsyndromes/

“MDS is a diagnosis of cancer.”
“Myelodysplastic syndromes (MDS) is a term that is used to describe a group of cancers of the blood and marrow. “

Dana-Farber Cancer Institute
http://www.newswise.com/articles/con...ancer-syndrome

Newswise — The recent death of Robert Matsui "" the 14-term Congressman from California who succumbed to myelodysplastic syndrome on Jan. 1 at the age of 63 "" has placed a national spotlight on a group of poorly understood and often incurable blood cancers.

Journal of Clinical Oncology
http://www.sciencedaily.com/releases...0426182000.htm

ScienceDaily (Apr. 27, 2010) — Myelodysplastic syndromes (MDS) -- a group of serious blood cancers

MDS UK Patient Support Group

“Blood cancers cover a number of very rare conditions including: myelodysplastic syndromes (MDS), multiple myeloma (MM), acute myeloid leukaemia (AML), chronic myelo-monocytic leukaemia (CMMoL), chronic myeloid leukaemia (CML), chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), Hodgkin's lymphoma (HL) and non-Hodgkin's lymphoma (NHL).”

Dr. Guillermo Garcia-Manero, Chief, Section of Myelodysplastic Syndromes, MD Anderson Cancer Center
http://www.sciencedaily.com/releases...1221161939.htm

“A new scoring system for a form of leukemia known as myelodysplastic syndrome (MDS). . .”

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  #65  
Old Fri Jul 22, 2011, 07:51 PM
Marlene Marlene is offline
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Came across this....

Amendment to reduce Agent Orange claims.....


http://www.sacbee.com/2011/07/20/378...-veterans.html
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  #66  
Old Sat Jul 23, 2011, 11:43 AM
Bob Macfarlane Bob Macfarlane is offline
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What MDS is according to the World Health Organization

Many may wonder why I am so adamant about the definition of MDS. It is because; even if you convince Veterans’ Affairs (via the Board of Veterans’ Appeals) that your condition was caused by exposure to Agent Orange, the Regional Office will classify you under anemia and deny compensation. This is a delaying tactic on their part to make you wait years to get before the BVA again.

Never forget that they will “Delay You, Lie to Deny You and Wait for you to Die.”

Lie is a harsh word but that is exactly what they will do with “plausible deniability” - - - in my personal case by getting a doctor to opine that MDS is not a malignancy unless you are darn near dead. Long ago I wrote him and told him that I would find the truth and he should - - -

“Never kick a tiger in the a$$ unless you have a darn good plan about what you are going to do with the teeth.”

This week I had the pleasure of telling him

“You should never pi$$ someone off that is smarter than you.”

07/21/11_56652PIQ

Your follow-up e-mail to Dr. Harold Varmus, Director of the National Cancer Institute (NCI), has been forwarded to this office for reply. Although disease classification is beyond the scope of the NCI’s mission, we are including information that you may find helpful.

According to the World Health Organization’s (WHO) “Classification of Tumours of Haematopoietic and Lymphoid Tissues,” MDS is recognized as a clonal neoplasm, meaning cancer. This is considered to be the definitive classification used on a worldwide basis. For more information, we have attached a portion of this book for you. The complete citation for this book is as follows:

Swerdlow SH, Campo E, Harris NL, et al. (2008). WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues. Lyon, France, International Agency for Research on Cancer.

More information about this topic is available in the following review article:

Vardiman JW, Thiele J, Arber DA, et al. (2009). The 2008 revision of the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia: Rationale and important changes. Blood 114(5):937-951.

Thank you for writing.


Deborah Pearson, R.N., M.P.H.
Chief, Public Inquiries Office
Cancer Information Service
National Cancer Institute

With great pleasure I copied the doctor on this:

Kudos to the NCI and WHO!

Dr. Kelly, Duke University, opined to the VA that my MDS is not malignant. Nobel Prize in Medicine to the good doctor for his discovery of a benign form of cancer. Benign not in remission because I am treated weekly. Kelly, extract your head from where the sun don't shine.

Before you try to crab away on this Kelly, my myelodysplastic syndrome we diagnosed by the Miami Veterans' Affairs Hospital. Feel free to contact Dr. Lucy Chua, my treating hematologist / oncologist, at the Miami VA Hospital and tell she doesn't know what she is doing.

Then again it might not be her that doesn't know what she is doing.

Then again I do have a copy of a letter sent to my United States Senator that states clearly "Veterans' Affairs does not consider diseases the same as the medical community." Duhhhhh?

Last edited by Bob Macfarlane : Sat Jul 23, 2011 at 11:56 AM. Reason: Formatting
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  #67  
Old Sun Jul 24, 2011, 04:14 PM
Bob Macfarlane Bob Macfarlane is offline
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My nexus letter

The number one question I am asked concerns what a nexus letter should look like, so I decided since my orginal was a bad scan I would re-entire it and share with you. The attachment contains all (21) of the footnotes that he used. I was successful before the BVA because of this letter. The BVA issued their decision without my ever appearing before them.

NORTHWEST ONCOLOGY AND HEMATOLOGY ASSOCIATES

DIPLOMATES AMERICAN BOARD OF INTERNAL MEDICINE
MEDICAL ONCOLOGY AND HEMATOLOGY

NEAL J. WEINRAB, M.D., F.A.C.P.
STEVEN WEISS, M.D.
TIMOTHY ALIFF, M.D.

April 24, 2006

To whom it may concern:

This letter is written on behalf of Mr. Robert Macfarlane a patient, whom I have evaluated for a diagnosis of myelodysplastic syndrome. I am a medical board certified oncologist currently in practice in Florida. My training in the field of oncology includes significant research and clinical experience in the diagnosis of hematologic malignancies.

Mr. Macfarlane is a 61-year old gentleman who was referred for hematologic evaluation following a several year history of macrocytic anemia. Ultimate work-up for this condition included a bone marrow examination which was performed on July 6, 2005, and led to a diagnosis of myelodysplastic syndrome (MDS) as the etiology of his macrocytic anemia. The key aspect of his bone marrow findings include a hyprocellular marrow, dyserythropiesis , dysmegakaryopiesis, and increased ringed sideroblasts. Because of the prolonged nature of his macrocytic anemia, it is presumed that Mr. Macfarlane’s case of MDS evolved well before he reached 60 years of age.

Myelodysplastic syndrome is generally an idiopathic disease of the elderly and rarely occurs in patients under 60 years of age. In patients like Mr. Macfarlane who develop early onset MDS , their disease is usually due to prior exposure to mutagenic agents, either through treatment with chemotherapy or through environmental/occupational exposure to genotoxins, particularly the aromatic hydrocarbons. Mr. Macfarlane has never received chemotherapy but from an occupational standpoint is it clear that Mr. Macfarlane was exposed to 2,3,7,8-tetrachlorodibenzo-p-dixon (TCDD), a known contaminant of herbicides while employed by the United States in Vietnam War. It is my medical opinion that Mr. Macfarlane’s myelodysplastic syndrome is casually related to exposure to TCDD during his military service in Vietnam on the basis of both epidemiologic and mechanistic data.

From a epidemiologic standpoint, it is established that TCDD exposure is causally related to a variety of clonal bone marrow diseases. In fact, many of these malignancies are already presumed by the Veterans’ Administration to be related to Agent Orange exposure and include all forms of non-Hodgkin’s lymphomas, chronic lymphocytic leukemia, and multiple myeloma. An increased risk has been documented in agricultural workers , an occupation in which exposure to dioxin-contaminated herbicides and pesticides is assumed. Other studies have linked exposure to benzene to elevated risk for MDS. As will be described below, benzene and TCDD are known to exert their toxic effects via common molecular pathways. Further epidemiologic evidence derives from a 1976 industrial accident in Seveso, Italy, in which several thousand residents were exposed to TCDD. Studies of this population have revealed a probable relationship between TCDD exposure and an increased risk of acute myeloid leukemia. Because acute myeloid leukemia (AML) may arise from previously unrecognized antecedent MDS, this finding suggests the possibility that a portion of the increased risk of AML in the residents of Seveso may be due to TCDD-mediated MDS. In conclusion, available epidemiologic data support the possibility of a connection between TCDD exposure and the pathogenesis of MDS.

Beyond the epidemiologic findings, the identification of characterization of the aryl hydrocarbon receptor have provided substantial mechanistic evidence linking TCDD to the pathogenesis if malignant disease. In fact, this evidence was the basis for the 1997 decision of the International Agency for Research on Cancer (a division of the World Health Organization) to upgrade its categorization of TCDD from “possibly carcinogenic to humans” (category 2B) to “known to be carcinogenic to humans” (category 1). The aryl hydrocarbon receptor (AhR) is a highly conserved nuclear receptor and transcription factor stimulated by TCDD, which leads to the induction and suppression of numerous genes. Mutagenic/carcinogenic events occurring downstream of AhR stimulation include changes in cell signaling proteins, calcium mobilization, growth factors, oncogenes, and cell proteins. Members of aromatic hydrocarbon family known to activate AhR include benzene, benzene metabolites, and TCDD (an aromatic hydrocarbon containing two benzene rings). Recent in vivo research molecular epidemiology research involving the victims of the Seveso accident has confirmed that TCDD exposure leads to predictable and consistent changes in the AhR pathway.

This growing body of mechanistic data regarding the aryl hydrocarbon receptor supports the presumption that aryl hydrocarbons, which include benzene and TCDD, act via a final common pathway in exerting their mutagenic effects. Because epidemiological studies correlate benzene exposure and the development of MDS (see foot notes 7-8), it is therefore plausible that TCDD exposure should carry identical risks. In the assessment of Mr. Macfarlane’s case of MDS, it is important to note that it was very early onset, which previously described suggests its relationship to toxic exposures. It is also important to note that with the exception of to TCDD during his military service in the Vietnam War, Mr. Macfarlane has not been known to exposed to any other mutagenic toxins which may lead to MDS, including no know exposure to benzene, chemotherapy or radiation, or even cigarette smoking. Accordingly, it is my firm medical opinion that when Mr. Macfarlane’s medical condition and history are viewed in totality, it is unlikely that anything other than TCDD exposure during his service in Vietnam caused his case of myelodysplastic syndrome.

Sincerely,



Timothy Aliff, M.D.


==============================

Click here to download this letter as a PDF

==============================

Last edited by Neil Cuadra : Mon Jul 25, 2011 at 09:22 PM. Reason: added link to PDF, at Bob's request
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  #68  
Old Mon Aug 15, 2011, 09:36 PM
captpgs captpgs is offline
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Blessing

Bob, thanks so much for talking with me. I got the same message when I tried to send an e-mail to your wife.

I am a new member and it has been such a blessing to find this website. My husband died in March from Myelofibrosis which had progressed into AML. He was in Vietnam from 1969 to 1970. He was also stationed at New River and received training at Camp Lejeune. All information is so helpful.


Quote:
Originally Posted by Bob Macfarlane View Post
The number one question I am asked concerns what a nexus letter should look like, so I decided since my orginal was a bad scan I would re-entire it and share with you. The attachment contains all (21) of the footnotes that he used. I was successful before the BVA because of this letter. The BVA issued their decision without my ever appearing before them.

NORTHWEST ONCOLOGY AND HEMATOLOGY ASSOCIATES

DIPLOMATES AMERICAN BOARD OF INTERNAL MEDICINE
MEDICAL ONCOLOGY AND HEMATOLOGY

NEAL J. WEINRAB, M.D., F.A.C.P.
STEVEN WEISS, M.D.
TIMOTHY ALIFF, M.D.

April 24, 2006

To whom it may concern:

This letter is written on behalf of Mr. Robert Macfarlane a patient, whom I have evaluated for a diagnosis of myelodysplastic syndrome. I am a medical board certified oncologist currently in practice in Florida. My training in the field of oncology includes significant research and clinical experience in the diagnosis of hematologic malignancies.

Mr. Macfarlane is a 61-year old gentleman who was referred for hematologic evaluation following a several year history of macrocytic anemia. Ultimate work-up for this condition included a bone marrow examination which was performed on July 6, 2005, and led to a diagnosis of myelodysplastic syndrome (MDS) as the etiology of his macrocytic anemia. The key aspect of his bone marrow findings include a hyprocellular marrow, dyserythropiesis , dysmegakaryopiesis, and increased ringed sideroblasts. Because of the prolonged nature of his macrocytic anemia, it is presumed that Mr. Macfarlane’s case of MDS evolved well before he reached 60 years of age.

Myelodysplastic syndrome is generally an idiopathic disease of the elderly and rarely occurs in patients under 60 years of age. In patients like Mr. Macfarlane who develop early onset MDS , their disease is usually due to prior exposure to mutagenic agents, either through treatment with chemotherapy or through environmental/occupational exposure to genotoxins, particularly the aromatic hydrocarbons. Mr. Macfarlane has never received chemotherapy but from an occupational standpoint is it clear that Mr. Macfarlane was exposed to 2,3,7,8-tetrachlorodibenzo-p-dixon (TCDD), a known contaminant of herbicides while employed by the United States in Vietnam War. It is my medical opinion that Mr. Macfarlane’s myelodysplastic syndrome is casually related to exposure to TCDD during his military service in Vietnam on the basis of both epidemiologic and mechanistic data.

From a epidemiologic standpoint, it is established that TCDD exposure is causally related to a variety of clonal bone marrow diseases. In fact, many of these malignancies are already presumed by the Veterans’ Administration to be related to Agent Orange exposure and include all forms of non-Hodgkin’s lymphomas, chronic lymphocytic leukemia, and multiple myeloma. An increased risk has been documented in agricultural workers , an occupation in which exposure to dioxin-contaminated herbicides and pesticides is assumed. Other studies have linked exposure to benzene to elevated risk for MDS. As will be described below, benzene and TCDD are known to exert their toxic effects via common molecular pathways. Further epidemiologic evidence derives from a 1976 industrial accident in Seveso, Italy, in which several thousand residents were exposed to TCDD. Studies of this population have revealed a probable relationship between TCDD exposure and an increased risk of acute myeloid leukemia. Because acute myeloid leukemia (AML) may arise from previously unrecognized antecedent MDS, this finding suggests the possibility that a portion of the increased risk of AML in the residents of Seveso may be due to TCDD-mediated MDS. In conclusion, available epidemiologic data support the possibility of a connection between TCDD exposure and the pathogenesis of MDS.

Beyond the epidemiologic findings, the identification of characterization of the aryl hydrocarbon receptor have provided substantial mechanistic evidence linking TCDD to the pathogenesis if malignant disease. In fact, this evidence was the basis for the 1997 decision of the International Agency for Research on Cancer (a division of the World Health Organization) to upgrade its categorization of TCDD from “possibly carcinogenic to humans” (category 2B) to “known to be carcinogenic to humans” (category 1). The aryl hydrocarbon receptor (AhR) is a highly conserved nuclear receptor and transcription factor stimulated by TCDD, which leads to the induction and suppression of numerous genes. Mutagenic/carcinogenic events occurring downstream of AhR stimulation include changes in cell signaling proteins, calcium mobilization, growth factors, oncogenes, and cell proteins. Members of aromatic hydrocarbon family known to activate AhR include benzene, benzene metabolites, and TCDD (an aromatic hydrocarbon containing two benzene rings). Recent in vivo research molecular epidemiology research involving the victims of the Seveso accident has confirmed that TCDD exposure leads to predictable and consistent changes in the AhR pathway.

This growing body of mechanistic data regarding the aryl hydrocarbon receptor supports the presumption that aryl hydrocarbons, which include benzene and TCDD, act via a final common pathway in exerting their mutagenic effects. Because epidemiological studies correlate benzene exposure and the development of MDS (see foot notes 7-8), it is therefore plausible that TCDD exposure should carry identical risks. In the assessment of Mr. Macfarlane’s case of MDS, it is important to note that it was very early onset, which previously described suggests its relationship to toxic exposures. It is also important to note that with the exception of to TCDD during his military service in the Vietnam War, Mr. Macfarlane has not been known to exposed to any other mutagenic toxins which may lead to MDS, including no know exposure to benzene, chemotherapy or radiation, or even cigarette smoking. Accordingly, it is my firm medical opinion that when Mr. Macfarlane’s medical condition and history are viewed in totality, it is unlikely that anything other than TCDD exposure during his service in Vietnam caused his case of myelodysplastic syndrome.

Sincerely,



Timothy Aliff, M.D.


==============================

Click here to download this letter as a PDF

==============================
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  #69  
Old Mon Aug 15, 2011, 10:48 PM
Bob Macfarlane Bob Macfarlane is offline
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I am what I am

I actually am no one special. Somehow I seem to have become a spokeperson for the 'Nam vets and widows in our battle to get Veterans' Affairs to do the right thing.

Anyone that has ever spoken with me has heard the same thing: "You offer to compensate me and I won't help you." Do believe someone heard that just today.

As God gives me strength to continue this fight, I shall do so. Many ask why they haven't heard from the VA and my honest answer must be, "I don't know." I do know that should you give up THEY WILL WIN.

You vets will understand this and widows heard it more than once "I am sick and tired of being tired."

Worn out and weary but will continue this battle until my last breath and praise God that I have a son that intends to continue the war against the VA.

The VA kicked all of us in the ass without having a very well thoughtout plan about what to do with our teeth. They are the bureaucrats but the sleeping dragon has awoken.
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  #70  
Old Thu Sep 1, 2011, 01:35 PM
Bob Macfarlane Bob Macfarlane is offline
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Institute of Medicine Decision End of September

Hi Jim,

I see no medical or ethical way they can deny the relationship between Agent Orange and bone marrow failure disease.

This is your government though and anything might come down in the report. They could actually ignore the issue completely. We may never know one way or the other what caused them to come to the conclusion that they will release.

Pray that the decision is based upon the facts and is not a decision that is based upon financial considerations. Or, a decision based upon their dislike of me. If they do decide for us, pray that the IOM tells the VA to stop treating our diseases as "pesky" forms of anemia.

It has been a long and wearing battle and I pray that the final decision gives you veterans the compensation that you so rightly deserve. I pray that the final decision gives widows and the families of those that did not make it to the end not only the compensation you have been denied but relief and peace knowing that your loved ones sacrifice will finally been recognized.

So many times I have read from the widows "My husband did not die in Vietnam, he died because of Vietnam" - - - that is so sad and truthful.

If we win, I personally am going to stick the report in the face of my doctor and tell her she and the other VA doctors should be ashamed for not having supported us overtly with the VA.

Win or lose, there is no way I could ever possibly adequately thank Judy Karp, David Steensma, Ruben Mesa or Mikkael Sekeres.

In my very first correspondence with Judy in 2009, she wrote back and said "If you are "tilting at windmills," then so am I -- and it is a windmill that is very much worth the effort."

David wrote in 2010 "Thank you for your history of service to our country" he was the first to wake me up to the fact that what we are dealing with is leukemia.

Ruben wrote " I respect and honor your service. I think its a travesty you are being given such a run-around."

Mikkael has written directly to Secretary Shinseki for me, as have the others.

There is Sherry Klumpp, DVM, from MD Anderson that has no dog in the fight. Sherry has been there to give me swift pickup anytime I need it. Sherry is in her own war with MDS.

Special thanks to the several hundred veterans and widows that have somehow managed to put up with the ranting and raving of this maniac through the years. Some of you going back as far as 2004.

We have run the race, we have fought the good fight and we have kept the faith - - - it is now time for the IOM and this nation to be faithful to our honorable service.

Love and great respect to all of you,

Bob



--------------------------------------------------------------------------------

From: Paxton, Mary [mailto:MPaxton@nas.edu]
Sent: Monday, August 29, 2011 1:49 PM
To: 'jet1xx@windstream.net'
Subject: RE: agent orange



Yes, its release is planned for the end of September.





Mary Burr Paxton, PhD, DABT
Senior Program Officer
Board on the Health of Select Populations
Institute of Medicine
Keck 871, 500 Fifth St., NW
Washington, DC 20001
(202) 334-1731
fax: (202) 334-2939



From: James Terpay [mailto:jet1xx@windstream.net]
Sent: Monday, August 29, 2011 9:37 AM
To: IOMWWW
Subject: agent orange



Is there going to be a bi-annual Agent Orange report this year?



Thanks



Jim Terpay
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  #71  
Old Thu Sep 1, 2011, 03:05 PM
Sally C Sally C is offline
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Hi Bob,
As the daughter of a WWII Army Medic (D-Day +6), the wife of a non-Veteran MDS patient, and as one who has the blessing of serving our brave Veterans as a volunteer at a local Veteran's Medical Center, I want to thank you for what you are doing for the Veterans who have contracted these horrible blood diseases through their service to our Country. Also I want to thank you for your service to our Country as well - and your continued service through your tireless work for these sick Veterans and their families.
I always appreciate reading your posts. Keep up the good work.
Thank you and God Bless,
Sally

Last edited by Sally C : Thu Sep 1, 2011 at 05:53 PM.
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  #72  
Old Sun Sep 18, 2011, 11:23 AM
Bob Macfarlane Bob Macfarlane is offline
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Exclamation Coming soon

The days are counting down to the bi-annual report on Agent Orange that will be released by the Institute of Medicine.

If you are so inclined to do so, please pray that they finally right the injustice that has been visited upon Vietnam veterans and our widows by the VA.


It has been 318 days since John Huber, Larry Sauger and I testified before the IOM. 318 days and 124,020 fewer 'Nam vets for the VA to be worried about.

If the IOM caves on this (since when has right or wrong had anything to do with a decision, e.g., it is an oxymoron to say ethics in government), my next step will be to get through my next BVA hearing by asking them to deny me so that a claim can be filed before the Court of Appeals for Veterans' Claims. My understanding is that the CAVC is a Federal Court unrelated to the VA and if one wins there we all win.
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  #73  
Old Fri Sep 30, 2011, 02:59 AM
Bob Macfarlane Bob Macfarlane is offline
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Thumbs down We lost

We Lost. The IOM Report Said Almost Nothing About MDS Or Any Other Bone Marrow Failure Disease.

As feared they totally ignored the evidence.

Said previously:

"I see no medical or ethical way they can deny the relationship between Agent Orange and bone marrow failure disease."

More later. At the moment I am just sick over the decision. 0300 hrs and I cannot sleep.
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  #74  
Old Fri Sep 30, 2011, 09:17 AM
Marlene Marlene is offline
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Location: Springfield, VA
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It saddens me to read this post. You've been fighting this battle for so long and were making progress.

Get some sleep .
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #75  
Old Sat Oct 1, 2011, 10:14 AM
2mm 2mm is offline
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IOM

Bob, I am so saddened to read your post. You have put so much effort into this fight, and those of us you represent have the deepest admiration for your courage and staying power. God bless you.

Lillian Mooradian, widow of COL. Moorad Mooradian. Vietnam 1969-1970 MDS diagnosed in 2005; progressed in 2009 to CML then AML.
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