Agent Orange

[Totffe]

Hi all....someone said here that there are no dumb questions, so mine is this: I was a ground pounder in Vietnam, Agent Orange defoliation everywhere, and was diagnosed with diabetes at a young age as a result. Recently, as a result of abnormal blood work I was tested via flow cytometry for further analysis. I can see my results on line, but am waiting for further evaluation from my hematologist. I see a lot of ominous CD markers in my test (CD5,10,19,20,23, Cd5+19, HLAHr.....CD19 positive on all of the light wave things) and am wondering if I can draw any conclusions from this, or at least enough to have an idea of what I might be dealing with. Go ahead and give me your worst, I am a big boy and want to narrow down my research before my doc calls so that I can have some intelligent questions. Thanks, Bob

[AussieNeil Administrator]

Are you able to scan/photograph your results and attach a copy? (Naturally with any identifying information hidden.)

[nkferg]

You need the other test results, like the FISH test. If you are lower risk, the newer treatments work very well for longer periods of time. I assume you are late 60s early 70s. You may find diabetes to be a bigger issue. You may have a slower progressing case and never need treatment. I believe CLL is on the presumptive VA list. I would work on getting it added as the medications can be very expensive.

[sundancing]

My doctor at the NIH, Gerald Marti, is on the committee looking into Agent Orange as a possible instigator of CLL. I was living in Malaysia, just downwind of the war at the time Agent Orange was used, and so thought I might be a candidate for this. Also, my daughter who was born there developed a severe case of ITP. So I asked him about it. But I was a civilian, not in the AF, and the committee is working with vets only, as I understand it. You should get in touch with the VA, which is handling the inquest for veterans.

[ThreeWs]

Hi Totffe,

CLL and other associated blood cancers can be diagnosed from blood testing. Beware of unneeded CT scans by asking the medical rationale for such imaging. Make sure you have proper military documentation to establish the time and location of your service in Nam. The dioxin poison component of Agent Orange is the presumed cause of many cancers and illnesses to include CLL and diabetes. Because most blood cancers can share biomarkers it is not possible to conclude from what you report an accurate diagnosis or prognosis.

Use a veteran's group to help guide your processing to getting a disability claim for best and timely result. Do not be confined to thinking you must rely only on the VA medical facilities for your care. VA medical staff are only necessary to establish the validity for your claim.

VA initially tried to claim my papers might not be available because of the length of time since my early tour in Nam (1962-63). I had saved my military passport with entry and exit stamps and copy of DD214 which ended that discussion.

The VA near me was staffed with ignorant and incompetent oncologists so I elected to be treated outside of the VA. VA centers may vary in quality of doctors - just be forewarned.

Good Luck,

WWW DX 2006 failed FR and HDRTX now on Ibrutinib over 7 years doing very well.

[Jonquiljo]

To add in ... Neil (above) said it very well. If you can scan/photo , etc. A copy of your results with the identifying information removed, there is enough expertise here for people to go over your results for you.

Just focus on the flow cytometry now .. as you can likely diagnose CLL from there. I think until you have a good idea IF you have CLL, you don’t need to get into more details. Copy of your latest blood counts are probably VERY helpful for people to comment on too. There must of been something in your blood work that prompted further investigation - like flow cytometry.

ThreeWs said it VERY well - everything. He said it better than anyone I've heard with agent orange related CLL or other problems - the VA - and how to deal with it, though it sounds like you are pretty savvy about medical issues, etc.

I will just say that IF you have CLL, it isn’t anything that good medical care can’t help you with these days. Any type of leukemia is not a picnic, but CLL is often very manageable. So stick around and talk to people. I’m sure we can help you with some of the points you want to approach your doctors with. And you are totally on track: the best thing you can do is prepare yourself with the best questions to go over with your Dr’s.

So please, stick around and tell us some more.

[Robws]

Hi, I was also in Nam in the Delta at Surgical hosp. Unit and diagnosed w CLL in 2016 & am receiving a 100% pension ...right now my wbc is rising but nothing to b concerned about at this point.Hemotologist says his concerns are not the wbc but higher hemoglobin counts but so far so good..As some one else said the diabetes is more of a concern than CLL as you prob already know