My CLL adventure

[JimboW]

In Vietnam 1965...now diagnosed with CLL. My local VA Dr is a terrific help... can’t say enough good about Dr Yutz. Now dealing with the VA for disability compensation for my stage 4. Undergoing immunotherapy that is helping. Good luck all you good people! Keep punching!!

[tsvieps]

Thanks for your service Jimbo. Not much thanks came to many of my friends who went to Nam. I sat at home with a critical skills deferment that I was not in a hurry to give up and join you there.

Do you think you might have been exposed to stuff there that led to your CLL?

The good news is that we now have several well-targeted drugs to control our CLL and some combinations seem to allow treatments that do not have to go on forever for many people.

[Hidden]

Agent Orange exposure can cause lymphoma

[MsLockYourPosts Passed Volunteer]

Are you filing for compensation for agent orange exposure? If not, there is a woman in another group who is familiar with how that works. Her family was at Camp Lejeune (sp?). Let me know if connecting with her might help.

[Awksom]

Like me my brother in law has CLL. His has been determined by the VA to be the result of Agent Orange in Vietnam. He was a CH53 pilot that had a habit of dropping in to uplift Marines el al in tough situations. He’s on ibrutinib and doing well.

[michaelmac]

Sorry to hear about your CLL. You sure were in early ,,,,, me 67,68.

CLL is now considered a Presumed Disease related to exposure to agent orange. The way that the VA is supposed to work is that because it is a proven, presumed cause of CLL you should not need to jump through too many hoops in order to get your compensation. Although when I filed a couple of years ago there was about an eight month processing period. There is help out there from the VFW. The person who worked with me had been a master sergeant ,,,, so he kinda just took charge and four,or five months later I had my rating. I would have to say though I had my paperwork pretty well in order for him.

If I can be of any more help to you please don't hesitate to ask. It might be a good idea to to go to a private messaging area ,,,,if there is one on this site.

Best of luck with your journey

I hope everybody else is having a great day or at least as good as possible

Michael

[JimboW in reply to michaelmac]

Thx Mike... happily all my info is with the VA ... no outside data needed. All was going well until the VA couldn’t find a record of my VN service. That is now corrected and we seem to be heading forward again. Started in June so I shouldn’t complain. Last contact seems to suggest approval in a month or so... we will see...

[michaelmac in reply to JimboW]

good new is it's reto to date filed

good luck with both ,VA and the journey

m

[MsLockYourPosts Passed Volunteer in reply to michaelmac]

Just an FYI. If you click on the avatar of the person you want to connect with or type their user name in the member search box you can private message. Responses will show up as a white number in the orange (or red) oval at the top of the page next to Chat.

[JimboW in reply to michaelmac]

Hi Mike, the AF lost most of my records and 5 months after applying fo benefits got a cryptic message telling me I had to prove my service in VN. In 1965 I was assigned for many months to a group that was setting up communications for Gen. Westmoreland when MACV was first being set up in Saigon. My home station was in the PI but my physical assignment was in VN...on the outer boundary of Tan San Knut air base. My DD214 wasn’t properly notated and I didn’t pay any attention to it when I was mustered out. Now years later I needed evidence! My local VFW rep was very helpful and after many months I received a letter from the AF directing that my records be corrected to reflect boots on the ground in VN in 1965! That was in 2014... fast forward to this last July.... the Department of Veterans

Affairs could not find the records from 2014 SNAFU.... now after many letters, fax’s, and much profanity I am back in the running for compensation and being treated for stage 4 CLL... sigh...

[michaelmac in reply to JimboW]

Hi JimboW

yep, it can definitely be a hassle. When I first looked at my DD 214 I was amazed at how brief it was. And, on a separate piece of paper that looked like something from kindergarten,,, was my record of having been in Vietnam. I'm not sure whether that would've been good enough, but I got lucky. I used to get loaned out a lot, so I always had lots of TDY orders hanging around. I actually hadn't meant to keep any of those but, I had written one of my buddies stateside addresses on the back of a TDY order. So I submitted the rest of my stuff, I sent that along. According to my advocate at the VFW .one miscellaneous piece of paper was the reason that I got processed so quickly. Even though in my DD 214 my dates of employment were noted. As I'm sure you know the military services work in strange and mysterious ways.

I'm glad that you are finally headed the right direction. The good news is that you should get Reto pay back to the day you filed.

Tan San Knut must have been on the edge of nowhere when you were there and 65. Like I said, I got loaned out a lot so I flew through an in and out of Tan San Knut a bunch of times. Usually trying to find a chopper going my way.

Good luck on your journey forward

Michael

[JimboW in reply to michaelmac]

Hi Mike .. your reply caused me to reflect about those times! It was really weird at the AB. It was actually an RVN base when I got there and we had no supplies or food! We were in the base perimeter and the VC were regular uninvited guests! Not a fun time but one I treasure... weird I suppose!

[michaelmac in reply to JimboW]

I am not sure how weird your nostalgic look back is. I suspect that we/some of us,,,, forget about the bad times, and the really bad times or not.

My experience,,,, base camp wise is rather similar to yours. We actually were inside an ARVN base as well, it was mostly a basic training base camp for the ARVN's but they also had some of their LLDB troops stationed there.

We actually had a perimeter or inside their perimeter which was manned by their trainees. Very interesting... I always got a weird feeling coming through the main gate or when we flew in. I was felt like I might have wound up in the wrong place.

Anyhow ,,,,,, hope everything works out for you with the VA and with your CLL journey

[DoriZett]

Bruce Wright via the CLL Society specializes in helping veterans navigate CLL and care especially through the VA. If you reach out to the CLL Society - they will put you in touch with him. All the best to you - and thank you for your service.

[bkoffman CLL CURE Hero]

Thrilled to hear you have a good VA doctor for your CLL. That is not always guaranteed. Where are you located? Stay strong Brian

[JimboW in reply to bkoffman]

Actually both my VA MD and my Oncologists are remarkable and capable! I consider myself fortunate and I am thankful that the VA takes good care of me!

[bkoffman CLL CURE Hero]

Glad you are so well cared for. Which VA facility do you use?

[JimboW in reply to bkoffman]

Central MO

[bkoffman CLL CURE Hero in reply to JimboW]

Thanks