Nasopharyngeal Cancer and Agent Orange

HAWVET
HAWVET Member Posts: 318
Are there any one besides myself who have naspharyngeal cancer and had served in Vietnam. The person can be a relative, spouse or family member. Am trying to establish numbers and whether a claim was processed with the Veterans Administration.
«13

Comments

  • vetswife
    vetswife Member Posts: 9
    My husband served in Vietnam & had nasopharyngeal carcinoma
    I have been looking for anyone with this situation for 3 years. My husband was in the Navy on the USS Oriskany. I am very eager to hear if you've had anymore replies. Even if we could make the connection to Agent Orange, until we hear further, the sailors aren't allowed benefits from Agent Orange. What years were you in Vietnam? Did you have any medical problems while there? I hope your treatments are going well.
  • HAWVET
    HAWVET Member Posts: 318
    vetswife said:

    My husband served in Vietnam & had nasopharyngeal carcinoma
    I have been looking for anyone with this situation for 3 years. My husband was in the Navy on the USS Oriskany. I am very eager to hear if you've had anymore replies. Even if we could make the connection to Agent Orange, until we hear further, the sailors aren't allowed benefits from Agent Orange. What years were you in Vietnam? Did you have any medical problems while there? I hope your treatments are going well.

    Unfortunately, you are the only one who has replied to this thread and it has been more than a month since I posted it. First, I thought the sailors won that presumption of exposure on a case concerning a navy man named “Haas”. I have not been keeping up with it since I was in the Army and was in country and presumed to have been exposed.

    The biggest hurdle is that the VA does not recognize nasopharyngeal as one of the diseases caused by exposure to Agent Orange.

    I believe the incidence rate for Vietnam veterans are higher than that of the rest of the nation. The cancer society reports a .7 of 100,000 for the nation. If these were the actual rates, then there should have been only 27 cases total for those who served in Vietnam. The number is at least 100.

    After a lengthy period, I lost my case. I am now pursuing other action and had hoped to get responses so we could together work on a plan. There are hardly any veterans or family members who visit this forum. I believe you are aware of the biennual Agent Orange Update prepared by the Institute of Medicine (IOM) Briefly, their review is the basis of the VA determining what illness is caused by exposure to Agent Orange. I have discovered that the adhoc committee is meeting again in December and the studies would result in Update 2008. Update 2006 was released last year. I have submitted written testimony for the committee.

    Possibly next year, I am considering submitting my same testimony to our Senator who is the Chairman of the Senate Veterans Affairs Committee. I want to see if the adhoc committee will provide a response to my testimony.

    The below web sites list the committee members and provide some basic information.

    http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=48892

    http://www8.nationalacademies.org/cp/projectview.aspx?key=48892
  • vetswife
    vetswife Member Posts: 9
    HAWVET said:

    Unfortunately, you are the only one who has replied to this thread and it has been more than a month since I posted it. First, I thought the sailors won that presumption of exposure on a case concerning a navy man named “Haas”. I have not been keeping up with it since I was in the Army and was in country and presumed to have been exposed.

    The biggest hurdle is that the VA does not recognize nasopharyngeal as one of the diseases caused by exposure to Agent Orange.

    I believe the incidence rate for Vietnam veterans are higher than that of the rest of the nation. The cancer society reports a .7 of 100,000 for the nation. If these were the actual rates, then there should have been only 27 cases total for those who served in Vietnam. The number is at least 100.

    After a lengthy period, I lost my case. I am now pursuing other action and had hoped to get responses so we could together work on a plan. There are hardly any veterans or family members who visit this forum. I believe you are aware of the biennual Agent Orange Update prepared by the Institute of Medicine (IOM) Briefly, their review is the basis of the VA determining what illness is caused by exposure to Agent Orange. I have discovered that the adhoc committee is meeting again in December and the studies would result in Update 2008. Update 2006 was released last year. I have submitted written testimony for the committee.

    Possibly next year, I am considering submitting my same testimony to our Senator who is the Chairman of the Senate Veterans Affairs Committee. I want to see if the adhoc committee will provide a response to my testimony.

    The below web sites list the committee members and provide some basic information.

    http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=48892

    http://www8.nationalacademies.org/cp/projectview.aspx?key=48892

    NPC not on list of AO
    I just read a part of the Veterans Health Initiative: Health Effects from Chemical, Biological and Radiological Weapons pdf - Independent Study Course Released: October 2003 Sponsored by Dept. of Veterans Affairs & Employee Education System. It says it's a training document for "Colleagues in Quality health Care" "clinicians treating our nation's Veterans must be aware of the specific conditions ..."

    What I noticed was the only time they mentioned nasopharyngeal cancer was to state: "Long-Term Effects. Despite having only limited medical literature on long-term health effects from exposure to mustard agent and Lewisite, in their 1993 review, the NAS committee concluded that there was some information linking exposure to these agents and certain long-term health effects. The broke down their findings based on the strength of the supporting evidence as: 1. Causal relationships a. The evidence found indicated a causal relationship between exposure to mustard and Lewisite chemical warfare agents and the following health conditions: . Respiratory cancers" [listed respiratory cancers were] .nasopharyngeal .laryngeal .lung.

    I believe that by endorsing this training document to health care clinicians treating our nation's Veterans they have admitted that nasopharyngeal cancer is a respiratory cancer.

    I have read a lot of appeals to the VA on the VA website. I have noticed that there are some appeals that have been granted. But the biggest thing is Your Doctor has to STATE that "more likely than not" this cancer was caused by Agent Orange because...
    They want
    1. the statement without doubt from the doctor
    2. the reason and facts why the doctor says it
    3. why the doctor feels nasopharygeal cancer is considered a respiratory cancer instead of head & neck. [I personally think all of them should be included]

    The latest granted appeal I saw was Citation Nr: 0811586 Decision Date: 04/08/08 Archive Date: 04/23/08 In this case the VA examiner agreed with the doctor and evidence.
    "THE ISSUES
    1. Entitlement to service connection for nasopharyngeal
    cancer, to include as due to exposure to Agent Orange.

    2. Entitlement to service connection for left ear disorder,
    including hearing loss, to include as secondary to
    nasopharyngeal cancer.

    3. Entitlement to service connection for dry mouth and
    throat, and dysphagia, to include as secondary to
    nasopharyngeal cancer"...

    "CONCLUSIONS OF LAW
    Resolving doubt in the veteran's favor,
    1. Resolving doubt in the veteran's favor, nasopharyngeal
    cancer was incurred during active military service,
    including exposure to Agent Orange. 38 U.S.C.A. §§
    1101, 1110, 1112, 1113, 1116, 5103-5103A, 5107 (West
    2002 & Supp. 2007); 38 C.F.R. §§ 3.102, 3.159, 3.303,
    3.307, 3.309 (2007)"...

    "ORDER
    Service connection for nasopharyngeal cancer, to include as
    due to exposure to Agent Orange, is granted."

    http://www.va.gov/vetapp08/files2/0811586.txt

    If you have a VA oncologist who agrees, you have all your medical documentation, and your doctors show reason as well as proof, it seems to help a lot. Of those that I see denied, they seem to have missed one or many of these points. Sometimes because the vet knows about other granted appeals they try to use that as proof and don't have the above 3 needed steps. As I said, those are denied, because they don't weigh the opinion of anyone without a medical degree (VA oncologist being the best, from what I've seen. Besides the 3 items above, I've also seen vets that let others prepare their paperwork for them, assuming that the VFW rep. or even a VA rep knows best (but in those cases they didn't). So please make sure your appeal is handled by someone that understands and hopefully has experience.

    I'm so glad you're trying to get the Senate Committee to hear you. I tried to get our local congresswoman to write up a bill and she said she'd look at a bill if some one else wrote it up. I guess without a lot of constituents with NPC, it's not worth her time to educate herself for the one that's trying to get her help.

    Maybe soon we'll hear that the courts have returned the decision back to the original way of allowing navy and air force to be allowed the benefits - at about the time you get the committee to see that NPC is a respiratory cancer. Maybe the granted appeals for NPC could help you also in presenting it to the committee.

    I've been trying to find out for about 3 years now. If I could find one more on the ship of 3,500 maximum then that would be 2 out of 3,500, instead of 2 out of 200,000. But if you have the data to prove the numbers of all the Vietnam Vets that would help. I'm thinking, like with the appeals, a private doctor and VA doctor on your side should help too.

    ???? I have one question for you. How do you know there's a hundred Vietnam Vets with NPC?
    Thank you for your time and help.
  • HAWVET
    HAWVET Member Posts: 318
    vetswife said:

    NPC not on list of AO
    I just read a part of the Veterans Health Initiative: Health Effects from Chemical, Biological and Radiological Weapons pdf - Independent Study Course Released: October 2003 Sponsored by Dept. of Veterans Affairs & Employee Education System. It says it's a training document for "Colleagues in Quality health Care" "clinicians treating our nation's Veterans must be aware of the specific conditions ..."

    What I noticed was the only time they mentioned nasopharyngeal cancer was to state: "Long-Term Effects. Despite having only limited medical literature on long-term health effects from exposure to mustard agent and Lewisite, in their 1993 review, the NAS committee concluded that there was some information linking exposure to these agents and certain long-term health effects. The broke down their findings based on the strength of the supporting evidence as: 1. Causal relationships a. The evidence found indicated a causal relationship between exposure to mustard and Lewisite chemical warfare agents and the following health conditions: . Respiratory cancers" [listed respiratory cancers were] .nasopharyngeal .laryngeal .lung.

    I believe that by endorsing this training document to health care clinicians treating our nation's Veterans they have admitted that nasopharyngeal cancer is a respiratory cancer.

    I have read a lot of appeals to the VA on the VA website. I have noticed that there are some appeals that have been granted. But the biggest thing is Your Doctor has to STATE that "more likely than not" this cancer was caused by Agent Orange because...
    They want
    1. the statement without doubt from the doctor
    2. the reason and facts why the doctor says it
    3. why the doctor feels nasopharygeal cancer is considered a respiratory cancer instead of head & neck. [I personally think all of them should be included]

    The latest granted appeal I saw was Citation Nr: 0811586 Decision Date: 04/08/08 Archive Date: 04/23/08 In this case the VA examiner agreed with the doctor and evidence.
    "THE ISSUES
    1. Entitlement to service connection for nasopharyngeal
    cancer, to include as due to exposure to Agent Orange.

    2. Entitlement to service connection for left ear disorder,
    including hearing loss, to include as secondary to
    nasopharyngeal cancer.

    3. Entitlement to service connection for dry mouth and
    throat, and dysphagia, to include as secondary to
    nasopharyngeal cancer"...

    "CONCLUSIONS OF LAW
    Resolving doubt in the veteran's favor,
    1. Resolving doubt in the veteran's favor, nasopharyngeal
    cancer was incurred during active military service,
    including exposure to Agent Orange. 38 U.S.C.A. §§
    1101, 1110, 1112, 1113, 1116, 5103-5103A, 5107 (West
    2002 & Supp. 2007); 38 C.F.R. §§ 3.102, 3.159, 3.303,
    3.307, 3.309 (2007)"...

    "ORDER
    Service connection for nasopharyngeal cancer, to include as
    due to exposure to Agent Orange, is granted."

    http://www.va.gov/vetapp08/files2/0811586.txt

    If you have a VA oncologist who agrees, you have all your medical documentation, and your doctors show reason as well as proof, it seems to help a lot. Of those that I see denied, they seem to have missed one or many of these points. Sometimes because the vet knows about other granted appeals they try to use that as proof and don't have the above 3 needed steps. As I said, those are denied, because they don't weigh the opinion of anyone without a medical degree (VA oncologist being the best, from what I've seen. Besides the 3 items above, I've also seen vets that let others prepare their paperwork for them, assuming that the VFW rep. or even a VA rep knows best (but in those cases they didn't). So please make sure your appeal is handled by someone that understands and hopefully has experience.

    I'm so glad you're trying to get the Senate Committee to hear you. I tried to get our local congresswoman to write up a bill and she said she'd look at a bill if some one else wrote it up. I guess without a lot of constituents with NPC, it's not worth her time to educate herself for the one that's trying to get her help.

    Maybe soon we'll hear that the courts have returned the decision back to the original way of allowing navy and air force to be allowed the benefits - at about the time you get the committee to see that NPC is a respiratory cancer. Maybe the granted appeals for NPC could help you also in presenting it to the committee.

    I've been trying to find out for about 3 years now. If I could find one more on the ship of 3,500 maximum then that would be 2 out of 3,500, instead of 2 out of 200,000. But if you have the data to prove the numbers of all the Vietnam Vets that would help. I'm thinking, like with the appeals, a private doctor and VA doctor on your side should help too.

    ???? I have one question for you. How do you know there's a hundred Vietnam Vets with NPC?
    Thank you for your time and help.

    First to answer your
    First to answer your question on the numbers with NPC who served in Vietnam. I based this on a cancer study in the below website.

    http://www.nap.edu/openbook.php?isbn=0309048877&page=392

    The study only included those born between 1929 and 1953. It was focused in a certain area in the United States. The study revealed that in this survey, there were 80 cases with NPC. It is not clear whether they are all Vietnam veterans.

    I quickly scanned all the cases on the VA website that were appealed. There are about 80 cases of veterans who appealed their NPC cases, although not all were Vietnam veterans. That plus some other documents were the basis of my conclusion. I recommended to the ad hoc committee that they should require the VA to provide them with statistics and I believe this information would be significant.

    On the case you cited, I submitted that as one of 4 cases I submitted to the committee. The most important part to me is not that the case was approved, but the physician stated that the pharynx should be considered part of the respiratory system. If you had inserted my name in that case, my symptoms were similar and I had filed for the exact same disabilities. That same case also has statements that the numbers of veterans with NPC are increasing.

    A doctor’s statement is very important. The best document I found on how a doctor’s statement should be written is within the guidelines provided by the Disabled American Veterans.

    My recommendations to the ad hoc committee included a three page summary with an additional 25 plus pages of supporting documents. Through that website I provided you earlier, I had gotten in contact by email with the Chairman and also the person responsible to supervise the assembly of documents. She wrote that she would make copies of my testimony for the committee. They were happy to receive input from veterans.

    That was the intent when I opened this thread and was very disappointed with the response. I thought that if they heard from a half dozen of us (to include spouses), then the committee may look at our cancer more closely.

    I believe in your case, the importance is not locating someone with cancer from the ship. I would be more concern that those aboard ship are presumed to have been exposed to Agent Orange. Then, it does not matter where you served. Have you researched the "Haas" case? I think he won his case. Are Navy personnel now in the same category of ground based troops?

    I believe the adhoc committee is the key in whether VA recognizes NPC as being caused by Agent Orange. If we fail at this route, then our congressional delegates are our other alternative. Of course, you can independently submit a claim but my thoughts are that it should not be approved only for a few.

    If you want to submit testimony, please let me know. You can check out the websites. I do not know if it is too late, but I can provide you with the administrators email address.
  • vetswife
    vetswife Member Posts: 9
    HAWVET said:

    First to answer your
    First to answer your question on the numbers with NPC who served in Vietnam. I based this on a cancer study in the below website.

    http://www.nap.edu/openbook.php?isbn=0309048877&page=392

    The study only included those born between 1929 and 1953. It was focused in a certain area in the United States. The study revealed that in this survey, there were 80 cases with NPC. It is not clear whether they are all Vietnam veterans.

    I quickly scanned all the cases on the VA website that were appealed. There are about 80 cases of veterans who appealed their NPC cases, although not all were Vietnam veterans. That plus some other documents were the basis of my conclusion. I recommended to the ad hoc committee that they should require the VA to provide them with statistics and I believe this information would be significant.

    On the case you cited, I submitted that as one of 4 cases I submitted to the committee. The most important part to me is not that the case was approved, but the physician stated that the pharynx should be considered part of the respiratory system. If you had inserted my name in that case, my symptoms were similar and I had filed for the exact same disabilities. That same case also has statements that the numbers of veterans with NPC are increasing.

    A doctor’s statement is very important. The best document I found on how a doctor’s statement should be written is within the guidelines provided by the Disabled American Veterans.

    My recommendations to the ad hoc committee included a three page summary with an additional 25 plus pages of supporting documents. Through that website I provided you earlier, I had gotten in contact by email with the Chairman and also the person responsible to supervise the assembly of documents. She wrote that she would make copies of my testimony for the committee. They were happy to receive input from veterans.

    That was the intent when I opened this thread and was very disappointed with the response. I thought that if they heard from a half dozen of us (to include spouses), then the committee may look at our cancer more closely.

    I believe in your case, the importance is not locating someone with cancer from the ship. I would be more concern that those aboard ship are presumed to have been exposed to Agent Orange. Then, it does not matter where you served. Have you researched the "Haas" case? I think he won his case. Are Navy personnel now in the same category of ground based troops?

    I believe the adhoc committee is the key in whether VA recognizes NPC as being caused by Agent Orange. If we fail at this route, then our congressional delegates are our other alternative. Of course, you can independently submit a claim but my thoughts are that it should not be approved only for a few.

    If you want to submit testimony, please let me know. You can check out the websites. I do not know if it is too late, but I can provide you with the administrators email address.

    the biennual Agent Orange Update prepared by the Institute of Me
    I wasn't aware the IOM was still updating the AO info. I hope they take your information and look at it from a fresh perspective.

    I think the study you were talking about with 3 vietnam vets with NPC out of 80 with NPC is a very high rate. I'm not good at figuring out ratios. But I do know the incidence rate should be 3 out of 300,000 NOT 3 out of 80. 3 million Americans served in the armed forces in Vietnam during the 1960s and early 1970s, the time of the Vietnam War. So that looks like the expected number of Vietnam Vets would be only 30. Since you have found 80 appeals, and with those that haven't filed (like my husband) and those that never appealed, it looks like there's well over 300% more than would be expected.

    Even the study you mentioned shows it's too high for the 80. (That was why I was looking even one other sailor from the USS Oriskany. It would be more than coincidence for 2 cases out of the few thousand on the ship)

    I'm glad you have information to submit to the Chairman of the Senate Veterans Affairs Committee. I'm sorry I don't know who that is or your even his state :(

    I research for hours and copy all I find because then I have to leave it, it's months until I can find the time to devote to researching again. I'm certain that soon the dots will start connecting. I'm so glad you're on top of it.
  • toniY
    toniY Member Posts: 3
    vetswife said:

    My husband served in Vietnam & had nasopharyngeal carcinoma
    I have been looking for anyone with this situation for 3 years. My husband was in the Navy on the USS Oriskany. I am very eager to hear if you've had anymore replies. Even if we could make the connection to Agent Orange, until we hear further, the sailors aren't allowed benefits from Agent Orange. What years were you in Vietnam? Did you have any medical problems while there? I hope your treatments are going well.

    My dad was diagnosed in 1992
    My dad was diagnosed in 1992 with nasopharyngeal carcinoma. he had radiation and lived 7 years in remission. He was in Vietnam and was in the Navy. I am going to have to research his years of services but I believe he was there in the late 60's.
  • HAWVET
    HAWVET Member Posts: 318
    toniY said:

    My dad was diagnosed in 1992
    My dad was diagnosed in 1992 with nasopharyngeal carcinoma. he had radiation and lived 7 years in remission. He was in Vietnam and was in the Navy. I am going to have to research his years of services but I believe he was there in the late 60's.

    Nasopharyngeal/Lung cancers and Agent Orange
    ToniY, thank you for your response. Did your Dad file a claim with the VA before he passed away? I do not know the details, but he may have been eligible for a claim if he was actually in Vietnam. All military personnel are presumed to have been exposed if they were in country. There is difficulty for those Navy personnel who were off shore on the ships in the surrounding waters.

    Concerning Agent Orange, cancers were listed in one of four categories. Lung cancer would have been in Category 2 “Limited/Suggestive” Evidence. Nasopharyngeal cancer (NPC) is in Category 3 “Limited/Inadequate” evidence. Since his doctor would suggest that his NPC was most likely as a result to exposure to Agent Orange, he would have a better chance of approval Combined with his lung cancer, he had an excellent chance of having it approved.

    I had hoped to receive many responses on this thread, but my hopes have diminished. I have not admitted defeat and am still trying.
  • toniY
    toniY Member Posts: 3
    I recently became interested
    I recently became interested in my late father's NPC diagnosis after I had sinus issues myself. When I researched his diagnosis it became clear that I do not have these symptoms, but more importantly I became troubled by the link between his war exposure and this disease. My Dad did recieve military benefits for diabetes, which he contracted while on tour. I never knew that both his lung CA and NPC could be contributed to his Vietnam tour as well. I feel angry and hope that you are able to secure more information for yourself.
  • HAWVET
    HAWVET Member Posts: 318
    toniY said:

    I recently became interested
    I recently became interested in my late father's NPC diagnosis after I had sinus issues myself. When I researched his diagnosis it became clear that I do not have these symptoms, but more importantly I became troubled by the link between his war exposure and this disease. My Dad did recieve military benefits for diabetes, which he contracted while on tour. I never knew that both his lung CA and NPC could be contributed to his Vietnam tour as well. I feel angry and hope that you are able to secure more information for yourself.

    Survivors Benefits
    ToniY,
    Glad to hear that your dad had a claim with the VA. Type 2 diabetes was linked to Agent Orange. I can understand your feeling angry if your dad did not associate his cancer with Agent Orange. We have recognized that information is not reaching out to all veterans so we have a monthly column in our local paper.

    I also was thinking of survivors benefits for your mom. I do not need the information, but if his passing was a result of his VA recognized disability, then your mom would be entitled to survivors benefits. If he passed away because of lung cancer or NPC, then there is a different course of action. Thanks for your concern on my case. Hawvet
  • ST4RK3Y
    ST4RK3Y Member Posts: 3
    I am Nasopharyngeal Cancer Survivor My father is a Vietnam Vet!
    Hello,I joined this community about 4 months ago. I never did anything with it.. I actually came here to vent a bit. I am a soon too be 28 year old Nasopharyngeal Cancer Survivor. My father Robert Charles Nicklow is a Vietnam Vet that is 100% Disabled/Compensated for Agent Orange, Diabetes Type 2, Loss of Hearing, PSD and Sterile. He Currently has Colon Cancer that has spread to his liver. His Tumor was removed and from his colon and he now has a colostomy bag. His Colon Cancer is not recognized by the VA even though Liver Cancer is. He has been fighting his cancer for 5 years now.

    I was diagnosed when I was 24 years old in 2005 I do believe If my terrible memory serves me correct. For the longest time I have searched for reasons why this Rare form of cancer had destroyed my life. The Doctors at the University Of Pittsburgh Medical Center told me it was a cancer caused by Chemicals. Before my treatment they asked my work enviroments and such. I grew up in front of a steel mill in Sharon Pennsylvania. Many People in Western Pennsylvania and Eastern Ohio have got some form of cancer. However what was weird to me is that I was 24 years old and as healthy as ox. I worked as a waiter for Quaker Steak and Lube Resteraunt in Downtown Sharon since I was able to work as a teenager. I have never worked in any mill or been exposed to chemicals. So for years now Ive always asked my self why.. and I came up with two logical answers. The Theory that I believe is my father is a proven agent orange exposed Vietnam Vet. This means that my dads DnA or something along that line has been altered and passed on to me. My whole life as a child I had Sinus problems and Dr's thought I had Asthma. I never treated for Asthma and played sports and learned to just deal with it. When My father was about 5 months in two his diagnosis and surgery for his cancer I had a lump form on the right side of my neck the size of one half of a NFl Football and my nose started bleeding all the time out of the blue. After makeing my way to pittsburgh and being correctly diagnosed by real doctors and not small town quacks.. (by the way they almost killed me) my first question was how did I get this type of rare cancer? My oncologist said,"Shawn somehow you came into contact with chemicals that caused this. See I thought I had got it from smokeing even though I had quit a year and a half before I had gotten sick.

    Then It dawned on me that all of this has to be stemming from the Agent Orange Exposure that has plagued my poor father his whole life after the military and now its takeing my life. After reciveing Intense Chemotherapy and Radiation everyday I was lucky to make it out alive. Before my Sickness I was attending Penn State University at the local Shenango Campus in Sharon and I had needed a history class for that semester so I took Vietnam 101. I got involved with the course so I could learn and understand my father and the vietnamese People. I learned about Agent Orange and how it was used by the military to kill vegetation so the Viet Kong had no jungle to hide in or eat from. I seen video of how american soldiers doused eached other with it and sprayed each other. It was as if nobody knew it was like the most potent weed killer ever invented and it would harm you. I seen videos of the vegetaion before and after agent orange spraying..

    I believe in my heart that Agent Orange is the answer to my question of why me and how did I get this at such a early age. The oncologist also said to me that Nasopharyngeal Cancer isnt common in young guys.. more of older men in that vietnam age bracket.. 55-68 years old..

    My other idea of why is that I lived in front of a steel mill that had pvc chemicals leaked into the local river in the 80's.

    Even though I am a cancer survivor my life is very hard to deal with. It seems that everday things are getting worse then the last. I try to get my spirit back that I had when I first started the fight for my life back..

    The radiation and chemo affects are to much for me to deal with.. Loss of memory, feeling at the tip of my fingers, Teeth are literally rotting out of mouth as we speak because I have no saliva glands that work. My mucus gland in my throat make a waxy substance now instead of mucus and it slowely makes its way to my gag reflex every couple of days causeing me to make snorting sounds in attempts to hocker it up. If that dont work then I puke and Puke and puke.. once it falls on that gag reflex im screwed. **** part is im 28 years old and I havent made it to a check up for the cancer in two years. I have no F*@#ing Insurance (God BLess America) and I cant even pull the damn welfare card because my dad is compensated by the VA and im on his bank accounts in case he dies so he says... My credit is ruined from when I was sick I had to live off of credit cards and do all of my driveing and appts alone 74 miles away in pittsburgh! Ps thanks Cancer Society for the $200 dollars per fiscal year.. that was about a joke. I would be dead right now if I didnt have great insurance right when I got sick. I was finishing my last semester to recieve my degree at psu and just got hired by Mid wetern intermediate Unit Four (Non Profit Government Agency that Caters to School Districts Supposedly). I just got hired in and had a bout 2 sick days when I got the shock of my life! My dad was laying on his death bed still in ICU.. ok,, Im starting to tell ramble and tell portions of my terrible life stories.. sorry people!



    Back to the point!

    So what im trying to say to the Poster is I would Love to assist you and any other Nasopharyngeal Cancer Patients or Survivors that think they got **** by AGent Orange! You can call me or email me or message me on here! Shawn.starkey@gmail.com 724 931 1353. My father is in hopes to cure cancers and help with any research or anything.. Thanks


    -Shawn Starkey
  • ST4RK3Y
    ST4RK3Y Member Posts: 3
    ST4RK3Y said:

    I am Nasopharyngeal Cancer Survivor My father is a Vietnam Vet!
    Hello,I joined this community about 4 months ago. I never did anything with it.. I actually came here to vent a bit. I am a soon too be 28 year old Nasopharyngeal Cancer Survivor. My father Robert Charles Nicklow is a Vietnam Vet that is 100% Disabled/Compensated for Agent Orange, Diabetes Type 2, Loss of Hearing, PSD and Sterile. He Currently has Colon Cancer that has spread to his liver. His Tumor was removed and from his colon and he now has a colostomy bag. His Colon Cancer is not recognized by the VA even though Liver Cancer is. He has been fighting his cancer for 5 years now.

    I was diagnosed when I was 24 years old in 2005 I do believe If my terrible memory serves me correct. For the longest time I have searched for reasons why this Rare form of cancer had destroyed my life. The Doctors at the University Of Pittsburgh Medical Center told me it was a cancer caused by Chemicals. Before my treatment they asked my work enviroments and such. I grew up in front of a steel mill in Sharon Pennsylvania. Many People in Western Pennsylvania and Eastern Ohio have got some form of cancer. However what was weird to me is that I was 24 years old and as healthy as ox. I worked as a waiter for Quaker Steak and Lube Resteraunt in Downtown Sharon since I was able to work as a teenager. I have never worked in any mill or been exposed to chemicals. So for years now Ive always asked my self why.. and I came up with two logical answers. The Theory that I believe is my father is a proven agent orange exposed Vietnam Vet. This means that my dads DnA or something along that line has been altered and passed on to me. My whole life as a child I had Sinus problems and Dr's thought I had Asthma. I never treated for Asthma and played sports and learned to just deal with it. When My father was about 5 months in two his diagnosis and surgery for his cancer I had a lump form on the right side of my neck the size of one half of a NFl Football and my nose started bleeding all the time out of the blue. After makeing my way to pittsburgh and being correctly diagnosed by real doctors and not small town quacks.. (by the way they almost killed me) my first question was how did I get this type of rare cancer? My oncologist said,"Shawn somehow you came into contact with chemicals that caused this. See I thought I had got it from smokeing even though I had quit a year and a half before I had gotten sick.

    Then It dawned on me that all of this has to be stemming from the Agent Orange Exposure that has plagued my poor father his whole life after the military and now its takeing my life. After reciveing Intense Chemotherapy and Radiation everyday I was lucky to make it out alive. Before my Sickness I was attending Penn State University at the local Shenango Campus in Sharon and I had needed a history class for that semester so I took Vietnam 101. I got involved with the course so I could learn and understand my father and the vietnamese People. I learned about Agent Orange and how it was used by the military to kill vegetation so the Viet Kong had no jungle to hide in or eat from. I seen video of how american soldiers doused eached other with it and sprayed each other. It was as if nobody knew it was like the most potent weed killer ever invented and it would harm you. I seen videos of the vegetaion before and after agent orange spraying..

    I believe in my heart that Agent Orange is the answer to my question of why me and how did I get this at such a early age. The oncologist also said to me that Nasopharyngeal Cancer isnt common in young guys.. more of older men in that vietnam age bracket.. 55-68 years old..

    My other idea of why is that I lived in front of a steel mill that had pvc chemicals leaked into the local river in the 80's.

    Even though I am a cancer survivor my life is very hard to deal with. It seems that everday things are getting worse then the last. I try to get my spirit back that I had when I first started the fight for my life back..

    The radiation and chemo affects are to much for me to deal with.. Loss of memory, feeling at the tip of my fingers, Teeth are literally rotting out of mouth as we speak because I have no saliva glands that work. My mucus gland in my throat make a waxy substance now instead of mucus and it slowely makes its way to my gag reflex every couple of days causeing me to make snorting sounds in attempts to hocker it up. If that dont work then I puke and Puke and puke.. once it falls on that gag reflex im screwed. **** part is im 28 years old and I havent made it to a check up for the cancer in two years. I have no F*@#ing Insurance (God BLess America) and I cant even pull the damn welfare card because my dad is compensated by the VA and im on his bank accounts in case he dies so he says... My credit is ruined from when I was sick I had to live off of credit cards and do all of my driveing and appts alone 74 miles away in pittsburgh! Ps thanks Cancer Society for the $200 dollars per fiscal year.. that was about a joke. I would be dead right now if I didnt have great insurance right when I got sick. I was finishing my last semester to recieve my degree at psu and just got hired by Mid wetern intermediate Unit Four (Non Profit Government Agency that Caters to School Districts Supposedly). I just got hired in and had a bout 2 sick days when I got the shock of my life! My dad was laying on his death bed still in ICU.. ok,, Im starting to tell ramble and tell portions of my terrible life stories.. sorry people!



    Back to the point!

    So what im trying to say to the Poster is I would Love to assist you and any other Nasopharyngeal Cancer Patients or Survivors that think they got **** by AGent Orange! You can call me or email me or message me on here! Shawn.starkey@gmail.com 724 931 1353. My father is in hopes to cure cancers and help with any research or anything.. Thanks


    -Shawn Starkey

    One more thing while my memory is working!
    Is their anymore Vietnam Veteran Children out their affected like me? I think the VA Should recognize us after all we are the seeds of these vets that have been doomed because of their mistakes in warfare!
  • gysgtjd
    gysgtjd Member Posts: 1
    Squamous cell carcinoma on tonsil
    My husband was told today that he has squamous cell cancer on his tonsil. He was Vietnam in 1966-1967 and then 1969-1970. He had heavy exposure to agent orange and receives the Agent Orange Report. Could Agent Orange have caused his cancer? He has not been to the VA yet but is receiving some VA compensation already. Thank you for any information you can provide.
  • kobri331
    kobri331 Member Posts: 1
    Nasopharengeal cancer
    My brother-in-law served in VietNam. Recently treated for Nasopharengeal cancer. looking for info on the incidence of thid type of cancer in Vietnam veterans as this is a rare cancer for Americans. Grateful for any help. Thanks
  • chinaberry25
    chinaberry25 Member Posts: 8
    ST4RK3Y said:

    One more thing while my memory is working!
    Is their anymore Vietnam Veteran Children out their affected like me? I think the VA Should recognize us after all we are the seeds of these vets that have been doomed because of their mistakes in warfare!

    Tonsil Cancer
    I am sorry to hear of your cancer at such a young age. My husband was In Country in 1970 and has cancer of the left tonsil. We have applied for Agent Orange but takes close to a year for approval. My husband has never smoked and has drank very little. We have just finished treatment and now if beginning to eat. He has gotten excellent care here in Albany, GA. The treatment is very rigid as you know. If you have to get cancer, the mouth is one of the worst places to have it. Was your cancer possibly related to HPV? This is a possible cause of it too. I know that you are bitter, so am I. I have tried to live my life as a good person and you see people every day that are bad people and nothing ever happens to them. But hopefully you will be able to maintain a healthy life in the future.
  • vietnamvetwife68
    vietnamvetwife68 Member Posts: 9
    ST4RK3Y said:

    I am Nasopharyngeal Cancer Survivor My father is a Vietnam Vet!
    Hello,I joined this community about 4 months ago. I never did anything with it.. I actually came here to vent a bit. I am a soon too be 28 year old Nasopharyngeal Cancer Survivor. My father Robert Charles Nicklow is a Vietnam Vet that is 100% Disabled/Compensated for Agent Orange, Diabetes Type 2, Loss of Hearing, PSD and Sterile. He Currently has Colon Cancer that has spread to his liver. His Tumor was removed and from his colon and he now has a colostomy bag. His Colon Cancer is not recognized by the VA even though Liver Cancer is. He has been fighting his cancer for 5 years now.

    I was diagnosed when I was 24 years old in 2005 I do believe If my terrible memory serves me correct. For the longest time I have searched for reasons why this Rare form of cancer had destroyed my life. The Doctors at the University Of Pittsburgh Medical Center told me it was a cancer caused by Chemicals. Before my treatment they asked my work enviroments and such. I grew up in front of a steel mill in Sharon Pennsylvania. Many People in Western Pennsylvania and Eastern Ohio have got some form of cancer. However what was weird to me is that I was 24 years old and as healthy as ox. I worked as a waiter for Quaker Steak and Lube Resteraunt in Downtown Sharon since I was able to work as a teenager. I have never worked in any mill or been exposed to chemicals. So for years now Ive always asked my self why.. and I came up with two logical answers. The Theory that I believe is my father is a proven agent orange exposed Vietnam Vet. This means that my dads DnA or something along that line has been altered and passed on to me. My whole life as a child I had Sinus problems and Dr's thought I had Asthma. I never treated for Asthma and played sports and learned to just deal with it. When My father was about 5 months in two his diagnosis and surgery for his cancer I had a lump form on the right side of my neck the size of one half of a NFl Football and my nose started bleeding all the time out of the blue. After makeing my way to pittsburgh and being correctly diagnosed by real doctors and not small town quacks.. (by the way they almost killed me) my first question was how did I get this type of rare cancer? My oncologist said,"Shawn somehow you came into contact with chemicals that caused this. See I thought I had got it from smokeing even though I had quit a year and a half before I had gotten sick.

    Then It dawned on me that all of this has to be stemming from the Agent Orange Exposure that has plagued my poor father his whole life after the military and now its takeing my life. After reciveing Intense Chemotherapy and Radiation everyday I was lucky to make it out alive. Before my Sickness I was attending Penn State University at the local Shenango Campus in Sharon and I had needed a history class for that semester so I took Vietnam 101. I got involved with the course so I could learn and understand my father and the vietnamese People. I learned about Agent Orange and how it was used by the military to kill vegetation so the Viet Kong had no jungle to hide in or eat from. I seen video of how american soldiers doused eached other with it and sprayed each other. It was as if nobody knew it was like the most potent weed killer ever invented and it would harm you. I seen videos of the vegetaion before and after agent orange spraying..

    I believe in my heart that Agent Orange is the answer to my question of why me and how did I get this at such a early age. The oncologist also said to me that Nasopharyngeal Cancer isnt common in young guys.. more of older men in that vietnam age bracket.. 55-68 years old..

    My other idea of why is that I lived in front of a steel mill that had pvc chemicals leaked into the local river in the 80's.

    Even though I am a cancer survivor my life is very hard to deal with. It seems that everday things are getting worse then the last. I try to get my spirit back that I had when I first started the fight for my life back..

    The radiation and chemo affects are to much for me to deal with.. Loss of memory, feeling at the tip of my fingers, Teeth are literally rotting out of mouth as we speak because I have no saliva glands that work. My mucus gland in my throat make a waxy substance now instead of mucus and it slowely makes its way to my gag reflex every couple of days causeing me to make snorting sounds in attempts to hocker it up. If that dont work then I puke and Puke and puke.. once it falls on that gag reflex im screwed. **** part is im 28 years old and I havent made it to a check up for the cancer in two years. I have no F*@#ing Insurance (God BLess America) and I cant even pull the damn welfare card because my dad is compensated by the VA and im on his bank accounts in case he dies so he says... My credit is ruined from when I was sick I had to live off of credit cards and do all of my driveing and appts alone 74 miles away in pittsburgh! Ps thanks Cancer Society for the $200 dollars per fiscal year.. that was about a joke. I would be dead right now if I didnt have great insurance right when I got sick. I was finishing my last semester to recieve my degree at psu and just got hired by Mid wetern intermediate Unit Four (Non Profit Government Agency that Caters to School Districts Supposedly). I just got hired in and had a bout 2 sick days when I got the shock of my life! My dad was laying on his death bed still in ICU.. ok,, Im starting to tell ramble and tell portions of my terrible life stories.. sorry people!



    Back to the point!

    So what im trying to say to the Poster is I would Love to assist you and any other Nasopharyngeal Cancer Patients or Survivors that think they got **** by AGent Orange! You can call me or email me or message me on here! Shawn.starkey@gmail.com 724 931 1353. My father is in hopes to cure cancers and help with any research or anything.. Thanks


    -Shawn Starkey

    my husband also served
    in Nam in 1968...He has been diagnosed for the third time with this. But this 3rd time it has spread to his lungs....He took chemo 3x, but has refused further treatment. He has just about given up..just started him on antideppressants and a food enhancer. they just started to kick in abfter 4 days.....Very little eating and drinking ...I just prayer that he continues to eat...he is awake about 4 -5 a day...not much time to eat...Just tell me what to do and I will do it!!!!!!!!!!!!!!! Any help is appreciated...........Thanks
  • dejohnso
    dejohnso Member Posts: 7
    gysgtjd said:

    Squamous cell carcinoma on tonsil
    My husband was told today that he has squamous cell cancer on his tonsil. He was Vietnam in 1966-1967 and then 1969-1970. He had heavy exposure to agent orange and receives the Agent Orange Report. Could Agent Orange have caused his cancer? He has not been to the VA yet but is receiving some VA compensation already. Thank you for any information you can provide.

    Squamous cell carcinoma on tonsil
    My husband was diagnosed with squamous cell cancer of the tonsil with spread to base of tongue and lymph nodes several months ago as well. He was also a Vietnam vet from 1967-1968 and had heavy exposure to agent orange as well. He is in his fourth week of chemo and radiation and had the tonsils and one lymph node removed. If your husband has any pain soreness of the mouth and throat when in treatment ask the doctor about a prescription for Miracle Mouthwash - it is a true miracle and is about the only thing that helps allow him to eat. As to the disability - get the Agent Orange Exam through the Veterans Administration and file a claim as soon as possible because even though tonsil cancer is not on the presumptive list if it does become so in the future the claim will be retroactive. Also, contact Mary Burr Paxton at:

    MPaxton@nas.edu
    Mary Burr Paxton, PhD, DABT
    Senior Program Officer
    Population Health and Public Health Practice
    Institute of Medicine
    Keck 871, 500 Fifth St., NW
    Washington, DC 20001
    (202) 334-1731
    fax: (202) 334-2939

    She is involved with the Veterans and Agent Orange review done every two years by the Institute of Medicine - they are looking at tonsil cancer and need more information on veterans with this disease - so please pass this info on to anyone else. The most recent review stated that Tonsil cancer needs to be studied more - so hopefully if enough of us get information in to them the next one will come out with stats to support tonsil cancer being caused by Agent Orange.
  • Jack D
    Jack D Member Posts: 2
    kobri331 said:

    Nasopharengeal cancer
    My brother-in-law served in VietNam. Recently treated for Nasopharengeal cancer. looking for info on the incidence of thid type of cancer in Vietnam veterans as this is a rare cancer for Americans. Grateful for any help. Thanks

    NPC/Tonsil Bed Squamos cell
    I'm a Viet Nam Vet(Army-68)and a 12 year survivor of this rare cancer plus prostate cancer, no history of either one in my rather large family. I have submitted a claim with the VA just recently. I do know of another former vet recently diagnosed with the same throat cancer and have advised him to file as well.
  • Jack D
    Jack D Member Posts: 2

    my husband also served
    in Nam in 1968...He has been diagnosed for the third time with this. But this 3rd time it has spread to his lungs....He took chemo 3x, but has refused further treatment. He has just about given up..just started him on antideppressants and a food enhancer. they just started to kick in abfter 4 days.....Very little eating and drinking ...I just prayer that he continues to eat...he is awake about 4 -5 a day...not much time to eat...Just tell me what to do and I will do it!!!!!!!!!!!!!!! Any help is appreciated...........Thanks

    How is he now?

    How is he now?
  • Barton14
    Barton14 Member Posts: 1
    Jack D said:

    NPC/Tonsil Bed Squamos cell
    I'm a Viet Nam Vet(Army-68)and a 12 year survivor of this rare cancer plus prostate cancer, no history of either one in my rather large family. I have submitted a claim with the VA just recently. I do know of another former vet recently diagnosed with the same throat cancer and have advised him to file as well.

    Father had tonsil cancer, now nasopharyngeal cancer
    My father served in Vietnam and has since been diagnosed with quite a few things as a result: Hepatitis C, Diabetes, 4 years ago beat Tonsil Cancer (thank god), and now has just been diagnosed with Nasopharyngeal Cancer...
    My family and I have absolutely no doubt in our mind that Agent Orange is a direct factor(except hep C from an air inoculation gun) in my dads health now. My father was always a very healthy guy, and especially not a heavy smoker or drinker. How could he possibly get two of the rarest forms of cancer and it NOT be related to agent orange??- this is the most frustrating, glaring, obvious correlation. The VA has got to own up to this...and I plan on contacting Mary Burr Paxton (from the above post).
    At this point I am of course more worried about him getting through the nasopharyngeal cancer. Can anyone give some insight into what they went through and what to expect and any suggestions? I also believe nutrition is vital and am strating him on a macrobiotic diet.
    Any help is greatly appreciated!
  • This comment has been removed by the Moderator