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Update from Sonny-It's been a while

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

I have not been here in a while, and for that I apologize to all of you my brothers and sisters. Been traveling a bit with my wife and trying to live a little normalcy for a while.

But today has prompted me to up date you on the latest of the good news and blessings that have come our way.

First (probably the most important) my wife absolutely loved the the first real trip she has had in the RV. She and her friend were treated like queens by me on their trip to the beach and had a blast. Lynn now fully understands the allure of RV traveling and life and is ready to embrace it full on. I really need to find a way to posts the pictures for you guys. They followed through on their promise of the custom apron. In the spirit of my offer to serve them well, they dubbed me "Beach B*tch for the trip and I proudly wore the embroidered apron when cooking. The also presented me with a bottle of champagne labeled "B*tch Bubbly", that they had found during a cooking class they attended.

Next, my son walked the graduation ceremony Saturday and earned his college degree. No small feat for a full time baseball player and he graduated on time in four years with no classes left to be made up. Might I also add he did it with a 3.5 GPA. His team is still playing great ball and it looks like we will be heading to Arkansas for the Regionals next week, May 13-17.

Today I received a letter from the VA, thought it was the good news, but it turned out to be an offer to buy life insurance. But it prompted me to call VA and check on my disability claim. The rep came back and told me I had been approved for 100% disability because of Agent Orange related PCa and the check had been released last Friday. I should receive it in the next 3-5 days. It was backdated to my original filing date of October 30, 2009 and should be quite a nice check. Should really pay for the traveling expenses and diesel full for a long time to come.

All in all I would say my life continues to be very blessed and it has been a great couple of weeks.

On the PCa front not much new. My PSA tests following radiation were not that good. 6 weeks after it was 1.0, then 30 days later it was 1.5. However the next 30 day test dropped to 1.20. A move in the right direction. I am still scheduled for a Sodium Fluoride PET Scan and organ MRI this Friday. My next PSA is scheduled for the following week. Let's all hope that the downward trend continues and the scans all come back clean.

Thank you all for your continued prayers and blessings, they have certainly enriched my life and those of my family members.

You all continue to be in my daily thoughts and prayers,

Sonny

60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Sonny,

Glad to hear of the great events in your life. Being a "beach bit*h" has always sort of a secret fantasy of mine. My youngest gets his PhD from MIT later this month and we're excited about that, as long as moving home isn't in his plans.

I've read a lot about a phenomena known as PSA bounce after radiation treatment. There's an initial big drop then a slight rise as the overall PSA readings move toward a nadir. Since radiation probably doesn't kill the entire prostate it's possible that some normal PSA is still being produced. My radioligsts have told me that long term they look for a PSA near 1.0 or below as a means of measuring success but it can take up to three years to get there.

What type of radiation to you have?

I am Vietnam Vet as well but didn't do time on the ground. Did a couple of carrier deployments in the early 70s and was part of the Eagle Pull evacuation at the end. After 33 years in the Navy I retired in 2002 with 0% disability. Maybe I ought to revisit that assessment.

Best to you in the future. You should post a picture while modeling the apron!

txbarton's picture
txbarton
Posts: 85
Joined: Aug 2009

Sonny - Great to hear you are doing well, especially attitude wise. You and Lynn remain in our prayers.

Kongo - VA disability for Agent Orange exposure has been extended to include aircrew that flew over Viet Nam, I didn't look specifically for off shore Naval ops but here are some websites to help your search:

http://www.vba.va.gov/bln/21/benefits/Herbicide/AOno1.htm
http://www.vba.va.gov/bln/21/benefits/Herbicide/

The approval of my claim was quicker than Sonny's; I applied on 21 Aug and was approved 1 Oct (6 days before my surgery). The compensation date is based on when you apply, not when diagnosed so the quicker you get it rolling the better. As with Sonny, even if it takes them a while to approve it they pay retroactively to the application date. I did all mine on line, didn't go to a VA office at all.

Good luck,
VB

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Kongo,

My radiation was IG/IMRT and they radiated the prostate bed. Didn't have a prostate any more, they took it out in September. I started the rad 74 days post surgery as my PSA continued to rise after surgery. You need to look into the VA benefits again, they have been expanding the coverages lately. They have also been streamlining the process to make things a little quicker. I agree with the assessment of "not moving back home" as well. I told my son we were trying to spend his inheritance and he needed to have a good job lined up or sign the MLB contract he has been turning down during his college career. I think he has decided whatever the offer is with this June's draft he is going to sign and give it a shot.

TX,

Glad to hear from you again. Hope things are going well for you. The VA approval didn't really take that long for me. I filed an initial "Intent to File Claim" on October 30,just to lock in the date and then filed the formal claim on December 28th. By my calendar they only took 4 months to the day to approve my claim. I think that is pretty fast for the government. There has been a lot of news lately about them trying to improve the process and I guess it's working. One of our fellow PCa brothers filed 2 months before me (online) and still hasn't heard anything yet. Go figure.

Blessing to both you and Kongo, will continue to keep all of my PCa brothers and sisters in our prayers,

Sonny

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Lots of good "life" stuff happening for you! Interesting...when my dad had Alzhiemer's I reopened his compensation case with the VA as he was only on 10-20% disability from his head injury in the Korean war. AFter my research of Alzhiemers I was able to get some hard study data proving a truamatic head injury could be the cause of Alzheimer's. The Brain Injury Institute in Virgina and John Hopkins provided the proof needed to get him classified 100% disabled and I also got one of those backdated very large checks that was timely to cover his very expensive care $4,900 per month in a nice unit in vista CA. He sadly passed away just as all his money was running out and I started investigating Medicare facilities - very glad I did not have to put him into one. He also had prostate cancer and worked at Rocky Flats I think a division of Dow Chemical and dealt with Barrium...that's probably why he got PCa.

HOPE The next PSA is yet LOWER!!!

Randy in Indy

steckley
Posts: 100
Joined: Aug 2009

Randy,

Seeing how your father worked at Rocky Flats, I am guessing that he was exposed to the milling of Beryllium metal (it is light weight, but stong) used in the manufacture of the Bomb.

To make a long story short, many Rocky Flat workers have been become sick (cancers)and died from this exposure. Many groups, and some congressmen (for example, Senator Udal of Colorado), continue to fight for compensation for survivors and families of those who died.

One web site that you may want to visit is that of the Beryllium support group: http://shell.dim.com/~mhj/

or google beryllium support group.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Now I need to ask mom if I was born after he worked there or before....if it was after...I guess I just signed up for huge fight!

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

It's good to him from you. I stop by from time to time just to take a look and see that you are doing pretty good. Sure glad to hear things are working out for you and your lovely wife.

Sorry to hear about your dad. But it looked like being prepared will work when dealing with the VA. My wife's father has Parkinson's and now that it has been added to the Agent Orange list I am helping him prepare his claim. He is really slipping fast with the symptoms and the disability benefits will certainly help he and his wife. He spent two tours in country in Nam for a total of 3 years with the Air Force, so he is absolutely a slam dunk for approval.

I promise to stop by a little more often. It's always good to catch up with everyone. We all come here looking for answers in the beginning and then realize as we travel our journey that there is a lot we have to give back to those that have followed us.

Continued good health and happiness to you and your family,

Sonny

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Glad to hear that life is treating you good...sorry we never made it to Florida in Jan....was back in hawaii for a few weeks....Rv'ing was never for me.....roughing it for the wife and I means..."No room service"...lmao
Jim ( Big Ugly Biker)

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Jim, let me see if I get this straight. You traded a trip to Orlando for a trip to Hawaii.
Well that certainly seemed like a no-brainer to me.

I hope that things are continuing to go well for you. I understand what you mean about room service, but I kinda like the ability to keep moving my "home" from one spot to another. Never have to worry about the view or the weather, it we don't like it we just move the home a few hundred miles and settle in again. My wife is a room service fan also. I think that is why she has kept me around for the last 27 years.

Hope things continue to go great for you,

Sonny

JR1949
Posts: 230
Joined: Jun 2009

Sonny, glad to hear that things are working out good for you. I know what you mean about we come here looking for help and advice and then tend to drop out occasionally. I try to get back online with CSN at least once a week but don't always do that. It makes me feel good when I can offer advice to someone who is facing what I faced already with the prostate cancer "curse". I also post on skin cancer bulletin board as my wife had stage 4 melanoma June 09, now cancer free March 10. I first went there for advice and info and now offer advice from what we learned with my wife's "journey" with cancer.

I also have good news from my last PSA , my PSA of less than 0.008 has been the same since July 09. My RP was March 09 and PSA preop was 22.

Hope things continue to go good for you and that PSA keeps going down

JR

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

Glad life is good for you. Hoping it continues.

Best,

Frank

mrspjd
Posts: 693
Joined: Apr 2010

sonny, or should I say "mr. B"
just the other day, prior to your latest post, I was reading some of your old posts and wondering how things were going for you. So it was good to see you update us. Glad you're taking the time to laugh and have fun on a roller coaster journey.

question to you and others re VA agent orange disability/comp claims. pjd served in the navy on a carrier off the coast of viet nam (tonkin gulf, i think) and we will check into a potential claim with the links posted in this thread. wondering, do you have to use or be using VA docs/services in order to make a claim or have to use any of their med services if the claim is approved? or is the comp a one time ck, to be used how you like?
thanks,
mrs pjd

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Mrs. PJD,

There are few hurdles to get over with respect to applying for VA benefits under the Agent Orange umbrella. Your husband must have served "In Country - Boots on the Ground" in order to qualify. Or he must prove that he was exposed to AO or transported it or had temporary duty on the ground in Viet Nam.

If he can provide that documentation then receiving benefits from the VA is almost automatic. No I was not using the VA for medical purposes at all. I have very good medical insurance and see the docs of my choosing.

The compensation is an ongoing monthly benefit amount based on the percentage of disability the VA approves the claim for. In the case of PCa, they grant 100% disability for as long as you have active PCa. Things may change down the road if the PCa seems to be absent or there are other considerations, like incontinence and ED. This is usually observed during follow-up VA doctors "re-evaluation" reviews.

I hope this answers your questions. I am by no means an expert on the VA and benefits. These are just the things I experienced and learned along the way.

Good luck to you and your husband,

Sonny

txbarton's picture
txbarton
Posts: 85
Joined: Aug 2009

I can't find the reference but VA disability elgibility has been extended to include aircrew who overflew Viet Nam. Seems the same might apply to shipboard operations near the coast.

I would check with a VA Regional Office and not rely on a VWF Service Officer (as VA sometimes recommends). They are knowledgeable and well meaning but may not have the latest info.

From one of VA's websites (http://www.vba.va.gov/bln/21/benefits/Herbicide/AOno3.htm) - "Under the law, veterans who served in Vietnam between 1962 and 1975 (including those who visited Vietnam even briefly), and who have a disease that VA recognizes as being associated with Agent Orange, are presumed to have been exposed to Agent Orange."

Good luck.

VB

mrspjd
Posts: 693
Joined: Apr 2010

Sonny & VB,
thx for the VA info and links. pjd will be cking into this and we will post what we find out sometime in the future.
mrs pjd

NM
Posts: 214
Joined: Jul 2009

Good to hear from you again Sonny.Prayers for your recovery as always. With your attitude I know you wont let numbers affect you. Good luck in your RV ing and I kind of envy you as I am back to work 50 to 60 hours a week and feel great.....Nick

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Nick,

It's good to hear from you my man. Been wondering how you're doing. Haven't seen to many posts from you when I checked in from time to time. Glad to hear it's going well, all except for the 50-60 hours work week. Sure am glad I am through with that phase of my life at the ripe ol age of 61. Then again, haven't done much of that for the last 10 years anyway. Just a little college umpiring and only that because I love it so much.

So keep doing great on the PCa front and I hope you pull a life time of zeroes.

Sonny

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