CancerCompass message board discussion started by Kandy on 1/30/2005 http://www.cancercompass.com/message-board/message/all,1519,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ We are trying to find out if those of you who have/had, or know anyone who has/had tonsil cancer has served in Viet Nam during the time Agent Orange was sprayed. My husband was diagnosed in March 2004 (age 54)with Squamous Cell Carcinoma of the Tonsil. He served from 1969-1970 in the general area of Chu Li. He started smoking when he was in Viet Nam and rarely drank. We would like to know if there is a link between Agent Orange and this type of cancer. We would appreciate any help you could give us give us. Thanks, Kandy Please do not put us on your mailing address. Kandy Sun, 30 Jan 2005 00:00:00 GMT I have the same cancer never smoked and drink very little. I have a veteran adviser working with me to fight the fact that it is not a listed respitory problem. I have a video conference with a Washington Judge to review my case. I hope to get a positive results. Casey Wed, 23 Mar 2005 00:00:00 GMT Dear Kandy, I have just been informed that one of my closest friends in the world has contracted Squamos Cell Carsinoma of the Piriform Sinus Gland in his throat. He did two tours in Vietnam and was exposed to Agent Orange. His wife has told me they have a VA news letter that states this kind of cancer has been linked to agent orange which was used in the jungle of Vietnam for defoliation. He hasn't smoked for over 25 years and only drinks socially not heavily. This form of cancer has been linked to heavy smokers and drinkers. Neither of these apply. We are praying for him and we will also include your husband and all the vets that may have been exposed. Blessings, Luke Agape1 Fri, 25 Mar 2005 00:00:00 GMT My husband and I both served in Chu Lai in 1970-1971. He was diagnosed with squamous cell carcinoma of the tonsil last year and completed surgery and radiation treatments. VA has denied his claim for agent orange benefits for the location of his cancer. My contention is that since the other structures that VA has approved are in the same location, then VA should approve this type of cancer. In addition, a lot of people of that generation had their tonsils out when they were children so this makes this type of cancer a rare condition. Have you had any success with VA in this regard? Bernadette Mon, 28 Mar 2005 00:00:00 GMT I was never in Vietnam, am 55 years old. Smoking is my feeling as to the cause of my Squamous Cell Carcinoma, Primary in the Left Tonsil. Islandfever Thu, 02 Jun 2005 00:00:00 GMT I also was in Viet Nam and am registered in the Agent Orange Registry. I have just been diagnosed with the above cancer and wondered if you have had any success with the VA so far? I just (6/14) had surgery that had confirmed that this was located in/ around my left tonsil. Thank you My name is Paul A. 4thebrdz Thu, 16 Jun 2005 00:00:00 GMT My father is a Vietnam Vet and has squamous cell carcinoma of the tonsil. He had surgery, which was very successful and soon will be undergoing radiation and possibly chemo. I agree completly that it has to be correlated with Agent Orange since this type of cancer is very rare unless you are a heavy drinker/smoker- which he is neither. We are waiting to see what the VA has to say. I also believe my father contracted Hep C from the war, but the VA won't recognize it, but has recognized his diabetes II. So cancer on top of it all I really hope we can get the smallest of compensation for what he sacrificed for his country. I am also looking to see if anyone has success with the VA regarding this?? Carene14 Fri, 08 Jul 2005 00:00:00 GMT I have still not heard for the VA about my claim for the above cancer. If this is a respiratory cancer (Which 2 DR allready concur) then it is considered a disability for the VA. WE will have to ALL fight for our claims. The VA will not give it to you for nothing. Hope all of the Vets are getting treatment and fighting for the claims. Paul A. 4thebrdz Sat, 16 Jul 2005 00:00:00 GMT Are you going through chemo and radiation right now? My friend was just diagnosed with the same thing... Steffani Sat, 06 Aug 2005 00:00:00 GMT I was not enlisted during the Viet nam war but am a Navy veteran 79-85. Was diagnosed with Tonsil Squamous Cell Carcinoma 4 years ago at age 41. I belive my cancer was smoking related. Mary Mtcrbear Tue, 09 Aug 2005 00:00:00 GMT I was diagnosed June 2005 (age 59)with Squamous Cell Carcinoma of the Tonsil. I served from 1967-1968 in Chu Li. I only smoked for four years in and after service and one or two years fifteen years later and do not drink. I am trying to find connection as well. I have started radiation this week and will take it for two month. Any information to make it service connected would be helpful. Thanks. Jimmie Thu, 08 Sep 2005 00:00:00 GMT Hi Jimmie and whoever else might be reading this. My name is Michael and I was diagnosed as well with SCC. I did three tours of Viet-Nam. Two on a carrier [I was in the Navy] and one on the ground. An Thoi, Phu Quock Island. Mobile Riverine Forces. We worked with the 9th Infantry Div. [Army] I'm at a VA hospital presently, have had a killer biopsy. Is healing. Dr. wants to pull out all my teeth. Radiation and chemo for seven weeks. I'm 59, was healthy 'till I found this out. Started getting sore throat in mid July of 05. Dr. says stage 4A. Any ideas, anyone? michael Maughn Sun, 16 Oct 2005 00:00:00 GMT Kandy, I know it has been a long time since you posted this, but my husband was just diagnosed three weeks ago with tonsillar cancer and I just found this board. He was in Viet Nam in 1967 and was at Chu Li. Was Agent Orange found there? Have you found very many other vets from Chu Lai that have tonsil cancer? Buckeye Fri, 13 Jan 2006 00:00:00 GMT I was stationed at An Thoi, Phu Quock Island in 67-68, Viet Nam. Most bases and posts were built on de-foliated areas of Viet Nam. Agent Orange is most likely the cause of my cancer of the throat and tonsilar area. I've done alternative treatments since October 05. Now it's March 06. The Dr. wants to do a neck dissection, followed by radiation, and maybe chemo. I assume quality of life will go downhill. Any good ideas? Maughn Thu, 23 Mar 2006 00:00:00 GMT I served in Vietnam in 1968 and 1969 with the 9th infantry division. Last year I was diagnosed with squamous cell carcinoma of the right tonsil with metastasis to the lymph node and neck. Went through radiation, chemotherapy, and surgery and am now 1 year cancer free. I filed a claim with the VA and recently received notification that my claim was denied. Reason for denial is that the condition is not a condition that is considered to be presumptive to Agent Orange per VA regulation. Also, my service medical records do not show any evidence of cancer in service. Should I just accept the VA response? Is there any pending legislation to add this type of cancer to the presumptive list? Modiam Mon, 03 Jul 2006 00:00:00 GMT Oh my gosh, appeal , appeal, appeal. Look how many there are in here. Phil was in the 25th the same years as you in nam. He has the EXACT same thing. It has been one year since surgery. Take Care good luck and write back. Carla. Carla Rae Wed, 09 Aug 2006 00:00:00 GMT I also had tonsil cancer. Diagnosed last February and had radiation, chemotherapy, and surgery to remove lymph nodes. Was with the 9th infantry division 1968 to 1969. Filed a claim with the VA, but was denied. Good luck. Modiam Wed, 09 Aug 2006 00:00:00 GMT I was diagnosed with SCC Tonsil Cancer spreading to nodes in Oct. 05, 4b t2 n2 mx. Filed my claim last Nov 05 and haven`t heard. My doc gave me a letter saying this cancer should be added to agent orange list. He is a major expert and has pages of awards in his field. Ron Korea, Vietnam, Cambodis 11th Cav 69/70 Cavman Sat, 12 Aug 2006 00:00:00 GMT I haven't appealed because I have yet to find anyone who has been successful in getting the VA to compensate for tonsillar cancer - Did your husband have any success? You can e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Modiam Sun, 13 Aug 2006 00:00:00 GMT I was a helicopter pilot station at Chu Li in 1970 and was diagnosed with squamous cell carcinoma of the right neck, with possible right tonsillar primary. In September of 2003 I had radical right neck dissection followed by 37 radiation treatments. During the operation they did biopsies of the tonsils, tongue, vocal cords, nasopharynx, and numerous other tissues. All came back negative, except for 6 of the 36 lymph nodes. The final diagnosis was squamous cell carcinoma of the right neck with occult primary. The occult primary means that they do not know the origin of the cancer other then it some where in the area of the neck. I applied for medical benefits from the VA and was denied, because the origin of the cancer could not be identified. I have been cancer free for three years and hope that your husband is doing well. I believe this cancer is related to agent orange and any help that you or any one else may have would be appreciated. Diamoundhead53 Thu, 02 Nov 2006 00:00:00 GMT I got word in September that my VA claim for Agent Orange was denied. My doctor at the University of Michigan thinks it is rediculous. He says how do they think it gets to the lungs etc. without passing thru the throat/tonsils. Ron Cavman Fri, 10 Nov 2006 00:00:00 GMT On 1/13/2006 Buckeye wrote:Kandy, I know it has been a long time since you posted this, but my husband was just diagnosed three weeks ago with tonsillar cancer and I just found this board. He was in Viet Nam in 1967 and was at Chu Li. Was Agent Orange found there? Have you found very many other vets from Chu Lai that have tonsil cancer? Hi, My brother and I were in Vietnam. I was at Da Nang Air Base and he was at Chu Lai Air Base. He received word that two of the guys he was stationed with have esophageal cancer from exposure to agent orange. Please call my brother Leonard DiNardo at 973 992-5998. Thank you. John DiNardo JohnArthur Thu, 19 Jul 2007 00:00:00 GMT My message is to all who served in Vietnam and have tonsiler Squamous Cell Carcinoma.  I was diagnosed in June of 2005 and underwent surgery to remove a large mass in my left neck area.  They removed 39 lymph nodes with four being cancerous. I underwent 39 treatments of radiation and two treatments of chemotherapy.  My primary cancer was in my left tonsil. I quit smoking in 1996, but was never a heavy drinker and I haven't had a drink of anything in two years.  I was in Vietnam from July 1965 to July of 1966 and applied for VA Benefits and was initially turned down. I have reapplied and am currently waiting for a decision.  I have found information from the University of Kansas that links SCC to Agent Orange.  If the VA denies my claim a second time, I will of course hire a lawyer to submit my case.  Now the good news, I have been cancer free for over two years now; however the dry mouth caused by the radiation caused my teeth to start cracking and I had to have them extracted.  A small price to pay for still being alive and starting to finally gain some weight.  I initially lost from 188lbs to 143lbs.  Wishing all of you good luck with your claims and if I receive good news will definitely post the results.Hang in there!!!!! Roustabout Wed, 22 Aug 2007 00:00:00 GMT  On 1/30/2005 Kandy wrote:We are trying to find out if those of you who have/had, or know anyone who has/had tonsil cancer has served in Viet Nam during the time Agent Orange was sprayed. My husband was diagnosed in March 2004 (age 54)with Squamous Cell Carcinoma of the Tonsil. He served from 1969-1970 in the general area of Chu Li. He started smoking when he was in Viet Nam and rarely drank. We would like to know if there is a link between Agent Orange and this type of cancer. We would appreciate any help you could give us give us. Thanks, Kandy Please do not put us on your mailing address.  Jerryr Sat, 12 Jan 2008 00:00:00 GMT I was in Vietnam in 1970-1971. I was diagnosed with Squamous Cell Carcinoma on 4/27/05. The cancer started in my right Tonsil. It had metastasized to my other tonsil, my tongue, the soft palate on the roof of my mouth, and both lymph nodes on my neck. I was advanced stage 4. I filed a claim with the VA and was denied. I filed an appeal and had a hearing at the VA. They told me that Tonsillar cancer wasn't on the approved list of cancers for Agent Orange. I told them that everything else in the mouth is covered except the tonsils. They said that no studies had ever been done to show agent orange caused tonsil cancer. I told them that such a study would never happen because most people of my generation had their tonsils removed as children. Jerry Jerryr Sat, 12 Jan 2008 00:00:00 GMT  On 8/22/2007 Roustabout wrote:My message is to all who served in Vietnam and have tonsiler Squamous Cell Carcinoma.  I was diagnosed in June of 2005 and underwent surgery to remove a large mass in my left neck area.  They removed 39 lymph nodes with four being cancerous. I underwent 39 treatments of radiation and two treatments of chemotherapy.  My primary cancer was in my left tonsil. I quit smoking in 1996, but was never a heavy drinker and I haven't had a drink of anything in two years.  I was in Vietnam from July 1965 to July of 1966 and applied for VA Benefits and was initially turned down. I have reapplied and am currently waiting for a decision.  I have found information from the University of Kansas that links SCC to Agent Orange.  If the VA denies my claim a second time, I will of course hire a lawyer to submit my case.  Now the good news, I have been cancer free for over two years now; however the dry mouth caused by the radiation caused my teeth to start cracking and I had to have them extracted.  A small price to pay for still being alive and starting to finally gain some weight.  I initially lost from 188lbs to 143lbs.  Wishing all of you good luck with your claims and if I receive good news will definitely post the results.Hang in there!!!!!My story is very similar to yours. I was diagnoised with tonsile cancer in my left tonsile about 13 years ago. I servered in viet nam in 1970 - 71. I filed a claim with the va but was turned down. I refiled a year later submitting the info from KUMC, but they were not interested. I guess if we all had had our tonsiles removed, like most our age, we would have some other type of throat cancer and be covered. We are being penalized because the tonsiles were doing what the tonsiles were supposed to do...I had a modified neck disection at KUMC and 7 weeks of radiation and have been cancer free since then. KansasGuy Tue, 18 Mar 2008 00:00:00 GMT I served in Vietnam.  The base and years are immaterial because the VA considers from the time Agent Orange was first sprayed in about 1965 to the end of the war as an appropriate time frame.  Also all of Vietnam was considered a sprayed area.  Like most of you I had tonsil cancer.  I wish it were covered because it like to killed me.  The VA denied it.  We made the same arguments.  If it can cause lung cancer, etc. it must go past the tonsils first.  Three medical doctors made statements to that effect.  Not a smoker or drinker for more than 3 decades.  Never heavy on either smoking or drinking though.  Tonsil cancer is a rare cancer.  Like many have stated many in our age group had them removed as kids. The American Legion has advised me to keep my appeals current.  The service officer thinks that one day tonsil cancer will be linked to Agent Orange.  In the last Agent Orange review, available at VA.gov, there is a current study on tonsil cancer.  This is the first time this has appeared in the Agent Orange review. According to the service officer, if you keep your appeals current and tonsil cancer is linked to Agent Orange and becomes covered, you will receive back pay to the date of the first claim.  The VA is becoming so frustrated with me that their last tome to me was 30+ pages long.  I was again denied, but plan to keep appealing.  dec49 Wed, 09 Apr 2008 00:00:00 GMT I also have had Tonsil Cancer, I was in VietNam 1969-70 and came down with this cancer in 2001. I did 7 weeks of radiation twice a day and had an expermintal chemo once a week for 7 weeks. I did as most on here have I filed with the VA and was tuned down. I do know that it is being studied and data is being collected. I would like all who have posted here to send a short email to the lady below explaining your cancer. She is the one putting all the data togather. 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 email: Paxton, Mary  MPaxton@nas.eduWishing you all sucess.Sgt D    SgtD6970 Sat, 13 Sep 2008 00:00:00 GMT  On 1/30/2005 Kandy wrote:We are trying to find out if those of you who have/had, or know anyone who has/had tonsil cancer has served in Viet Nam during the time Agent Orange was sprayed. My husband was diagnosed in March 2004 (age 54)with Squamous Cell Carcinoma of the Tonsil. He served from 1969-1970 in the general area of Chu Li. He started smoking when he was in Viet Nam and rarely drank. We would like to know if there is a link between Agent Orange and this type of cancer. We would appreciate any help you could give us give us. Thanks, Kandy Please do not put us on your mailing address.I’m an ex  National Service man 1972 intake Austrian army there have been studys done see the site address at http://www.cancer.org/docroot/PED/content/PED_1_3x_Agent_Ora I know a few people with this that get good results from drinking one half tea spoon of BI-Cab soda in a half glass of water three times a day I tryed to debunk this seveal time but people keep tell ing me it helps dont know why take care God bless Ray jcr65566 Sat, 13 Sep 2008 00:00:00 GMT  On 9/13/2008 SgtD6970 wrote:I also have had Tonsil Cancer, I was in VietNam 1969-70 and camedown with this cancer in 2001. I did 7 weeks of radiation twice a dayand had an expermintal chemo once a week for 7 weeks. I did as most onhere have I filed with the VA and was tuned down. I do know that it isbeing studied and data is being collected. I would like all who haveposted here to send a short email to the lady below explaining yourcancer. She is the one putting all the data togather. 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 email: Paxton, Mary  MPaxton@nas.eduWishing you all sucess.Sgt D   Sgt. D, and others. Afriend of mine is a pharmacist.  She was born in Vietnam.  Ona recent trip to Calif. I told her about my tonsil cancer.  I hadthe standard treatment.  Six weeks of radiation, 3 chemotreatments during the same time frame as my radiation, followed byradical neck surgery.  I have dry mouth and my teeth have beenbreaking off due to lack of good blood flow to the roots of myteeth.  No dentist or doctor has done anything more than write mea presciption for either salagen or evoxac.  These pills at leastmake life livable.  However, she is convinced that doctors arejust treating the symptoms and not the problem.  She gave me abottle of Parotid PMG. I had no hopes that it wouldhelp at all.  My family and I returned from Calif. on Aug.11.  On my last email to her, I told her I was cautiouslyoptomistic.  I honestly believe it is helping.  I think mysaliva is actually better than since before my cancer.  My cancertreatment was in 2004.  I have had dry mouth ever since.  Idon't remember what a normal amount of saliva feels like.  Also Iam not saying that it has returned to normal.  All I am saying isthat I an pretty well convinced that it is helping me.  Ihave no financial interest in the manufacturer of this product. My only motive here is to offer some possible hope to those who havebeen suffering the same post treatment ills that I have had. Ifanyone reads this post and tries it, please report whether there havebeen any good or ills effects from it.  Remember I have beentaking it for about 5 weeks now.  The bottle I received was a giftso I don't know the price.  I don't believe you will find it in ahealth food store.  The box says 'sold by heathcareprofessionals'  My friend indicated that I could probably find itin a drugstore, but probably would have to ask as it would be behindthe counter.  Wishing the best for all. We go to hell in southeast Asia then return to fight the private hellof cancer brought on by our service there.  Meanwhile all thedraft dodgers are now in congress.  Not too bitter.dec    dec49 Sun, 14 Sep 2008 00:00:00 GMT  On 9/14/2008 dec49 wrote: On 9/13/2008 SgtD6970 wrote:I also have had Tonsil Cancer, I was in VietNam 1969-70 and camedown with this cancer in 2001. I did 7 weeks of radiation twice a dayand had an expermintal chemo once a week for 7 weeks. I did as most onhere have I filed with the VA and was tuned down. I do know that it isbeing studied and data is being collected. I would like all who haveposted here to send a short email to the lady below explaining yourcancer. She is the one putting all the data togather. 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 email: Paxton, Mary  MPaxton@nas.eduWishing you all sucess.Sgt D   Sgt. D, and others. Afriend of mine is a pharmacist.  She was born in Vietnam.  Ona recent trip to Calif. I told her about my tonsil cancer.  I hadthe standard treatment.  Six weeks of radiation, 3 chemotreatments during the same time frame as my radiation, followed byradical neck surgery.  I have dry mouth and my teeth have beenbreaking off due to lack of good blood flow to the roots of myteeth.  No dentist or doctor has done anything more than write mea presciption for either salagen or evoxac.  These pills at leastmake life livable.  However, she is convinced that doctors arejust treating the symptoms and not the problem.  She gave me abottle of Parotid PMG. I had no hopes that it wouldhelp at all.  My family and I returned from Calif. on Aug.11.  On my last email to her, I told her I was cautiouslyoptomistic.  I honestly believe it is helping.  I think mysaliva is actually better than since before my cancer.  My cancertreatment was in 2004.  I have had dry mouth ever since.  Idon't remember what a normal amount of saliva feels like.  Also Iam not saying that it has returned to normal.  All I am saying isthat I an pretty well convinced that it is helping me.  Ihave no financial interest in the manufacturer of this product. My only motive here is to offer some possible hope to those who havebeen suffering the same post treatment ills that I have had. Ifanyone reads this post and tries it, please report whether there havebeen any good or ills effects from it.  Remember I have beentaking it for about 5 weeks now.  The bottle I received was a giftso I don't know the price.  I don't believe you will find it in ahealth food store.  The box says 'sold by heathcareprofessionals'  My friend indicated that I could probably find itin a drugstore, but probably would have to ask as it would be behindthe counter.  Wishing the best for all. We go to hell in southeast Asia then return to fight the private hellof cancer brought on by our service there.  Meanwhile all thedraft dodgers are now in congress.  Not too bitter.dec   My father is a Vietnam Veteran or as they say he is NOT a Vietnam Veteran because he served 1956-1962 during a Police Action and not the actual declared war.  He was just diagnosed with tonsillar cancer and is due for surgery on September 18, 2008.  His cousin also in Vietnam;however much later in years, suffered from Leukemia.  He fought to get this covered under VA benefits for years to no avail as an agent orange related cancer.   After years and years of fighting the VA he finally did get this covered only to succumb to this illness months later.  My father was just recently diagnosed so I am not sure if this is "covered";however they are doing the surgery at the VA in Indianapolis so I would assume it is going to be a covered illness.  They have been very good to my father in this regard and have covered all of his illnesses thusfar and is considered a disabled veteran and receives partial disability pay, and usually during any type of surgery and during recovery they have bumped him up to 100% disability pay until fully recovered.  I will know more when we talk to the surgeon tomorrow on how this will work.  All veterans regardless of where the illness came from should be covered in my opinion and we all need to stand up for these benefits.  Our veterans sacrificed everything to serve our country the least we can do is provide medical care regardless of how the illness arises.  Our government officials are taken care of no matter what and very few have actually served our country.  This is an outrage to treat our veterans in this manner.  It is hard enough going through something as severe as Cancer let alone trying to figure out how to pay for such expensive treatment.  This is an added stress that no family should ever have to go through.  I guess we have just been really lucky and fortunate in this regard with the Indianapolis VA.  I just pray they will continue to take care of my father with the best means possible.  I will update you with any information I do obtain and his prognosis.    foofurr2 Wed, 17 Sep 2008 00:00:00 GMT