Home         Forums  

Go Back   Marrowforums > Practical Issues > Insurance, Finances, Disability, Veterans Benefits
Register FAQ Search Today's Posts Mark Forums Read

Insurance, Finances, Disability, Veterans Benefits Your finances, insurance, job issues, and veterans benefits

Reply
 
Thread Tools Search this Thread
  #276  
Old Thu Jan 19, 2017, 07:06 PM
rar rar is offline
Member
 
Join Date: Mar 2014
Location: colorado
Posts: 181
I was exposed to benzene while in the Army in 1961. I applied for disability and was denied. Dr. Steensma wrote a very strong letter in my behalf, my doctor wrote a less strong letter. Both letters did address the two points given in the denial. The VSO sent the letters off as a notice of disagreement. She says I should hear back in 3 to 5 years. I said I would be dead by then. She says not to worry my wife can continue the claim.

When I was in the Army (1958 - 1962) the Army encouraged smoking. Coffin nails were five cents a pack at the PX. Smoking was allowed in the barracks and the smoke was so thick it was hard to see across the barracks. Second hand smoke should be classes as a presumptive cause of MDS.

Ray
Reply With Quote
  #277  
Old Mon Jan 23, 2017, 02:30 PM
barbara a barbara a is offline
Member
 
Join Date: Jul 2013
Location: hendersonville,nc
Posts: 50
Ray, you.made me smile!! I am going on 17 years from initial claim for husband, appeal, he died, survivor benefits claim, 6th appeal!! My appeal is 'formally' on DC docket for this year!!
Vets with MDS claims have died before any decision had been made!
Sad. Dr. Steensma is reviewing my husband's records as I type
GOOD KUCK! DON'T GIVE UP!!
barbara
Reply With Quote
  #278  
Old Mon Jan 23, 2017, 08:01 PM
rar rar is offline
Member
 
Join Date: Mar 2014
Location: colorado
Posts: 181
My decision letter said:
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.

If you don't mind, on what grounds was your claim denied?
Reply With Quote
  #279  
Old Wed Feb 1, 2017, 01:29 AM
barbara a barbara a is offline
Member
 
Join Date: Jul 2013
Location: hendersonville,nc
Posts: 50
Rar...Ignore all that..file an appeal what they wrote to you was my 3rd denial statement...I went from a 1 sentence denial to 16 pages. I have an atty who is writing an appeal and representing me on a contingency basis. If you wish I will share their info
Dr steensma just wrote a review as an independent review of husband's med records. .he addresses most of the points the VA questioned
I also sent to my atty research articles that supported a possible connection between TCDD a contaminate in AO and the abnormality it may have on bone marrow and Hematopoietic cells.
Each case is different and so are board members most of which know nothing about MDS..it literally is a crap shoot for the Vet. AND on an individual case by case appeal process NO PRESODENSE is set by any single decision. PLUS, the regional VA may deny you and if you keep appealing it hopefully gets to Fed level. I wrote extremely emotional letters to Obama ,Biden, governors and 18 months later received notice my appeal went to DC where it sat somewhere for a year!!!
The VA has stopped researching blood/ bone marrow disorders related to AO (2015) SO it's a 1 claim at a time.
How many times have you been denied? Do you have a healthy person to advocate for you??
Reply With Quote
  #280  
Old Mon Feb 20, 2017, 10:21 AM
Bob Macfarlane Bob Macfarlane is offline
Member
 
Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 121
One claim at a time

BVA decisions have always been one claim at a time. They ignore any decisions sited concerning another veteran.

The study being done at Dana-Farber is being led by Dr. Steensma. Within a year we should have the results of whether MDS is linked to Agent Orange or not. I have seen a number of positive decision linking AML to AO. In almost every case the BVA opined that since AO contained "dibenzo" the AML was caused by benzine exposure.

I brought that up before the Institute of Medicine in Chicago in 2010 and was ignored. As I am sure you are all aware, benzine exposure is also a cause of MDS.
Reply With Quote
  #281  
Old Sun Mar 26, 2017, 08:01 AM
Bob Macfarlane Bob Macfarlane is offline
Member
 
Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 121
Volunteers needed

Dr. Steensma's study on the linkage between Agent Orange and MDS has started but they would really like to get about ten more participants.
Reply With Quote
  #282  
Old Sun Mar 26, 2017, 11:01 AM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
They have my blood sample. It will be interesting to see if they can separate all of those who smoked in Vietnam (and much of their lives) from those who might have been exposed to AO? We were given cigarettes with every meal when I was there. Or, those who did not serve in Vietnam and still got MDS and AML?
__________________
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.
Reply With Quote
  #283  
Old Sun Mar 26, 2017, 02:16 PM
Bob Macfarlane Bob Macfarlane is offline
Member
 
Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 121
When the results are in

I can just picture you standing before the House Veterans' Affairs Committee testifying that David's conclusion is wrong because smoking caused your MDS. You are so sure of yourself, why did you participate? You should have stayed out so you don't skew the results.
Reply With Quote
  #284  
Old Sun Mar 26, 2017, 05:40 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I have never smoked. Smoking is considered a primary cause of MDS and AML. Did you ever smoke? Why the attitude?
__________________
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.
Reply With Quote
  #285  
Old Sun Mar 26, 2017, 09:52 PM
Bob Macfarlane Bob Macfarlane is offline
Member
 
Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 121
Why the attitude?

Because most of the posts you put in the forum, about Agent Orange and MDS, always cry about smoking being a possible cause.

I have worked tirelessly for years attempting to encourage people in their fight with the VA. I have spent thousands of dollars to travel and testify for veterans and widows, only to have you attempt to discourage other veterans and widows. Never have I accepted a single cent accepted for my help.

I have a one track mind and that is to help the veterans and widows. Marrowforums is not a social media site for me. If it were, perhaps I would also have 800+ posts on the site like you.

I have a life outside of here! And as long as MDS allows me, I am going to live that life- - -reduced quality of not.

I am not upset with you personally but start trying to help and not discourage.
Reply With Quote
  #286  
Old Mon Mar 27, 2017, 01:54 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Smoking is "a possible cause". There are many, many studies that confirm this. Any association with benzene can be a link to MDS. These findings should not be ignored. That is why this is so difficult for the VA. Most people are exposed to benzene their whole lives and not just their little time in Vietnam.

From the MDS Beacon, "A newly published research review concludes that smoking is associated with an increased risk of developing myelodysplastic syndromes (MDS)." "All ten earlier studies examined the risk of smoking, and included a total of 1,839 people with MDS as well as 2,831 people without MDS (as controls). In order to assess the link between smoking and developing MDS, the studies grouped ex-smokers and current smokers together in one group, and all others in a “non-smoking” group.
Based on their review, the authors of the new study estimate that smokers have a 45 percent higher likelihood of developing MDS than non-smokers."

"The major sources of benzene exposure are tobacco smoke, automobile service stations, exhaust from motor vehicles, and industrial emissions." " About 50% of the entire nationwide (United States) exposure to benzene results from smoking tobacco or from exposure to tobacco smoke." (From Agency for Toxic Substances and Disease Registry).
__________________
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 : Fri Mar 31, 2017 at 10:13 PM.
Reply With Quote
  #287  
Old Tue Apr 4, 2017, 07:42 PM
Data Data is offline
Member
 
Join Date: Sep 2014
Location: Florida
Posts: 236
Exclamation Concur with Bob

I have to concur with Bob. If someone is on my side, I would expect that they do exactly what Bob is doing - fighting with all his strength for the Veterans who have fought and lost, those who are currently fighting their battle, and those who have yet to begin their fight. It is clear whose side Bob is on. Not so sure of others! If it isn't obvious whose side someone is on, I personally don't want them on my side. I think they wind up being a liability rather than an asset.

Best of luck to the Vets and to David Steensma!!!

Data
__________________
Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
Reply With Quote
  #288  
Old Wed Apr 5, 2017, 10:12 AM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Let's be very clear if these comments are directed toward me (Bob's are for sure):

1) I have been supportive of military veterans my entire life. I spent my entire Vietnam experience in the infantry in constant direct combat. I have too much respect for those who fought beside me to let pass these "cheap shots" by Bob regarding my devotion to fellow veterans.

2) I was one of the very first to send in my three large vials of blood for Dr. Steensma's study. I appreciate and support his effort. There is nothing derogatory on my part by suggesting that the task will be very difficult to prove the primary involvement of AO in the different blood diseases.

3) Because I respect and appreciate the efforts of the VA does not make me a "schill" for the VA as Bob likes to portray. The VA is not the enemy.

4) My only contact with the VA was to present my situation to add to the VA database about MDS. I couldn't have asked for better support from them. It was not about compensation or anything for my personal benefit.

5) For Bob to belittle my participation on this forum is regrettable. I don't understand his offensive attitude. If my experiences with these diseases can help anyone, I will continue in that effort. I will be having my 21st BMB today. I have had a stem cell transplant. I have experienced GVHD. I have had 26 cycles of Vidaza along with cycles of Revlimid and other drugs. These experiences along with those of others are valuable for anyone visiting this forum.
__________________
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.
Reply With Quote
  #289  
Old Wed Apr 5, 2017, 12:30 PM
rar rar is offline
Member
 
Join Date: Mar 2014
Location: colorado
Posts: 181
Bailie,

I am behind you 100%. Bob means well and works hard at it. He would be more effective if he quieted down his abrasive tone, learned to answer peoples direct questions, and didn't make up statistics.

I have had mixed results with the VA. They supply me with hearing aids and free drugs. On the other hand when I went to the VA oncologist for a second opinion she verified the MDS and told me the VA had such a long waiting list for a stem cell transplant that I would be dead before my number came up. I was exposed to unprotected benzene in the Army and was denied disability.

I served pre-Vietnam.

Ray
Reply With Quote
  #290  
Old Sun Apr 9, 2017, 01:33 PM
Bob Macfarlane Bob Macfarlane is offline
Member
 
Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 121
You dare to impugn my honesty?

Put up or shut up you two, ballie (with his hospital chart and 800+ comments) & rar (never set foot in the 'Nam), because I "didn't make up statistics". My statistics are 100% verifiable and many came directly from Freedom of Information Act requests I filed and were directly answered by Veterans Affairs and the rest from scientific publications.

There are a few comments that came from emails from Ms. Mary Ellen McCarthy who was the then executive assistant to the United States Senate Veterans Affairs Committee. They are duly noted.

On the CD I have supplied to so many veterans and widows of veterans, each and every comment concerning statistics is footnoted and "hyperlinked" to assist in locating the original source.

The are NO I think or I feel comments.

As far as tobacco smoke being the cause of MDS I withhold any judgement on that. Any one ignorant enough to smoke should rather thank God for MDS and not lung cancer.

Someday perhaps David Steensma might share how this AO / MDS study came about and what the impetus might have been?

When the Executive Director of the Aplastic Anemia/MDS International Foundation is willing to say this about you, get back to me!

Now about Bob:
Aside from the fact that he has done more for Vietnam vets with MDS , their spouses and widows than anyone else on the planet , he is still a rascal and can often be a pain in the posterior.


Let there be no mistake, you do something to stand in the way of a veteran or widow of a veteran, and I will be the biggest pain in the ass you have ever known.

Last edited by Bob Macfarlane : Sun Apr 9, 2017 at 09:07 PM.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 03:30 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2016 Marrowforums.org