Essential Thrombocytosis(Too many blood platelets)

[werickso49]

Hi:

I am new member to this site and I hope to connect with as many people about my condition.

I am a 63 year old Viet-Nam Vet and was exposed to Agent Orange,when I was stationed in Danang back in 1970/1971.Everything was fine(I thought) for several years,after discharge from the Air Force in 1972, and never even thought about AO,until a fellow vet told me a story(back in 2006)about his exposure to this dreaded dioxin.Sad story,as he said he didn't have much longer to live!Anyway,during a pre-op blood test in 2007,I was diagnosed with a rare disease/condition called Essential Thrombocytosis.I was told by an hematologist/oncologist that it was because my bone marrow was not functioning as it was supposed to. There is no cure BUT it is manageable.I'm on a regimen of 500 mg of a med called Hydroxyurea...........1 cap a day for the rest of my life.This was to stabilize my platelet count which was around 1,000,000 when discovered to its current level of approx. 471 thousand,which is considered in the "safe zone".My problem is ,is that my condition could "morph" into a more serious condition.Quite unnerving,to say the least.As of recent reports,no-one has any idea where this comes from(same for its counterpart........Lower platelets),it's not hereditary,is not contagious,is manageable but is also quite serious.I have to go for a blood draw every month and have my platelets monitored.See,too many platelets could lead to clotting issues.(IE: Clots could form,travel to the brain/heart/other areas of the body.and could result in some kind of catastrophic situation).There is a reason I am saying all this and I hope I'm not boring too many with this information.

To shorten this thread,somewhat,........under advisement from a VA rep,here in New Hampshire(where I live),I filed a "disability claim",for my condition alleging that AO was the reason,in part,for my condition.Oh,by the way,for those that didn't know it?..............ANYONE that spent ANYTIME in Viet-Nam WAS exposed to Agent Orange.Whether it was for 1 day or any length of time.This garbage was sprayed over alot of jungle area during the war,as a defoliant(It also obviously went air borne all over the countryside,by the wind!).It was also used in limited amts. in Laos,Cambodia and Thailand.That being said,I was required to get a AO screening physical.Nothing was noted as being AO related.There is a presumptive list of maybe about 12 or so conditions,linked to AO.My condition wasn't one of them................My claim was denied,and I appealed.It's been over 2 years and counting!Researching on line,I discovered that MANY Viet-Nam Vets had come down with this condition,but the VA simply refuses to recognize the possibility that AO could be the cause!
Get this: Type 2 diabetes is one of those conditions on "the list".This diabetes is one of the most common,most treatable,most reversable and ANYONE can get it.regardless of age and/or gender.I have a friend (V.Vet) who was diagnosed with t2d and he's getting 100% disability(About $2,600.00 a month).Oh,he also eats anything he wants,smokes like a chiminey(sp?) and laughs all the way to the bank!With this disability benefit,soc. sec. and a pension he gets from somewhere,he's living on almost $6,000.00 a month.We,who have this incurable,rare condition(My Dr. said possibly 1 out of every 250,000 people may get it.....The National Institute of Health...NIH...has higher estimates) are getting squat because it's not on "the list".I've been trying to get some kind of response/count as to how many Viet Vets are affected by this and if they have had trouble getting VA assistance for it.
If anyone(Vets and/or family members of those vets) reading this can add to this thread,or maybe we can start our own "session",please respond with your experiences.I was told that for ANYTHING to stick to my claim,I would have to get "clinical rationale" to back up my claim.Simply put,a medical professional opinion saying that the chemical(s) used in AO could be the reason for this heartbreak.The chemical is abreviated tcdd and is an acronym for a long chemical name.I have not found one medical professional, anywhere,to commit themselves to any kind of a statement.I get answers like......"We don't know much about AO".............. Can't find any med profs old enough to have served in 'Nam,or even explain this dioxin and what it might do to bone marrow.
Hope to hear from somebody.Pse contact me here on this site OR e-mail me at werickso49@hotmail.com OR "friend" me on FB My profile picture was taken when I was in 'Nam and I'm holding an orphan.(Frequented the Danang Orphanage to visit the kids,as often as I could)

Thanks for the time to read this lengthy thread,but hopefully we can come up with something.I am NOT going to give up on this,but I sure could use some help.

Wayne Erickson(Viet-Nam Vet from NH)

[cathybee1]

If you do a search through the forums on "Agent Orange" you will find several posts.


Meantime, here's a thread to get you started. Some of the folks posting would be good contacts for you.

http://forums.marrowforums.org/showt...t=agent+orange

[Lbrown]

I don't know if you've seen this website, they mention Agent Orange in relation to multiple myeloma: http://www.lls.org/diseaseinformatio...esriskfactors/

Why not contact them and ask about their research? Maybe they would know of other connections to your disease? You could also try pubmed, maybe you'll find something there: http://www.ncbi.nlm.nih.gov/pubmed/

Good luck,
Deb

[werickso49]

Thank you so much,Deb for your input.I appreciate the help,and advice.Thanks again and GOD bless.............

Wayne

[Lbrown]

You're welcome Wayne, I hope you find something that helps. I bet lots of other people do too.

Deb

[a_elm77]

Wayne, my Dad served in Vietnam in 1968-69 in Dong Tam. We lost him in 2003 from Agent Orange exposure. He developed lung cancer which quickly spread, and he died only 6 weeks after his diagnosis. I am the one who was diagnosed with ET in March of 1999, just before I turned 22. I'm 35 now, and currently only treat with aspirin. I have had plateletpheresis twice, and took Hydrea as well as Lovenox injections on one occasion. (after surgery to remove my gallbladder) I was diagnosed with a bone marrow biopsy, but my oncologist ran a Jak2 test on me a year ago, and it was positive.

Navigating the VA is frustrating. We had help filing my Dad's claim (we had a volunteer liaison who helped us with paperwork etc), and they won't even listen to me as far as a 2nd generation victim goes. i have a laundry list of other illnesses, and myself as well as my doctors have no doubt it is from my Dad's exposure. It breaks my heart that men such as yourself served our country, then had a door slammed in your face when you try to get help for a medical issue caused directly from that service.

All I can do is thank you for your brave service, and tell you that I am here and can relate to your situation in an eerily similar fashion.

-Allison

[Neil Cuadra]

Allison,

I'm sorry you lost your Dad to lung cancer, and so quickly.

Is your doctor saying that you inherited genetic mutations caused by your father's Agent Orange exposure? What kinds of evidence do you and your doctors have to present to the VA?

[jerryss]

Wayne
your situation appears similar, but no situation is ever exactly the same, VN vet, using Hydrea for essential Essential Thrombocythemia (ET) for a few yrs...3 or 4 500 mg caps p/d...now having quite a few problems with cancer cells...one doc states that cancer cells are from using Hydrea another no comment...
did you ever receive a disposition on your VA claim? rec'd same comments as you did from docs,,,such as; don't know much about AO or causes, submit a claim and see what happens, etc.
so far it looks as if no one wants to research ET as caused by AO
would like to hear any comments you have
thank you
Jerry

[Holden1956]

I was diagnosed with Essential Thrombocythemia (ET) 10+ years ago. I have been on steadily decreasing amounts of hydroxyurea (HU) for that period. About 6 months ago my hematologist had me go completely off of HU and take a 325 mg aspirin every other day. Platelets have been steady in the 250 to 350 range.

I asked if there was such a thing as a "remission" from ET when I had a CBC this past Monday. He said that one explanation might be that the HU affected my marrow enough in those 10 years that it now produces fewer platelets than it used to.

Anyone have any experience with (or like) this?

Thanks

[seanandkatem]

I stumbled across this while researching AO effects for my dad who served until 69 in Vietnam. We are currently battling for his death benefits for a lung fungus called aspergillus. We lost him at the age of 63 in March of 2012. My mom just started wondering if all of my health issues could correlate to his exposure. I find it interesting that other kids of Vets have the same disorder. I tested positive for the JAK2 mutation and had a bone marrow biopsy that ruled out Leukemia. I take aspirin daily right now but was told I can't have any more children. (I almost lost my son to a blood clot in my placenta) I go into my hematologist once a year for monitoring and will have to redo the bone marrow biopsy every 3-5 years depending on my platelet count. I know this is an older thread but thought I would put my info out there and let others know you aren't alone and I think there is some correlation.

[fjurroz]

Hi Wayne -

I too was in VN in the I-Corps area (DaNang/Hoa An), and was just recently (2 weeks ago) diagnosed with Essential Thrombocytosis (ET). I too am very interested in learning more about the relationship between Agent Orange (AO) and ET. Have you found anything else out as of your last posting? Were you able to get your claim approved?

Fernando
USMC '69-'70
California

[bailie]

Hello Fernando, I was in Vietnam 70'-71' and have MDS/AML. The problem is that there are so many possible causes of our blood diseases that it is very difficult to pin point one cause such as AO. I know I was exposed to probably hundreds of chemicals after Vietnam that could have easily influenced my diagnosis. As far as the VA, it was when I could put Vietnam, agent orange, stem cell transplant and leukemia in the same sentence that they decided to rate me as disabled. I wish you the best in finding as much information as possible.

[Henry C]

Hi Wayne, I served in Nam 1970-1971 in the Army Artillery Unit. I was diagnosed with essential thrombocythemia in 2013 and have been taking hydroxurea ever since. My platelets were at 700,000 but are now around 450,000 which is fine with my oncologist. I visited a VA clinic several years ago and the doctor suggested I file an AO claim and said if your boots hit the ground in Nam it an AO exposure. I filed a claim with the VA with the help of the Veterans Assistance Commission in my county. I was turned down, filed a letter of disagreement and that was declined. My oncologist was a former VA doctor and he warned it was an uphill battle. I hope there will be strength in numbers so we can get the VA to realized this condition is related to AO. I have two brothers and relatives who never had this condition so I can rule out heredity.