Topic: Looking for other Veterans with CC

Hello everyone - This is my first time on this website, read many of your entries and  can't believe how many of you (young with small children, to the older crowd) and their families are dealing with this terrible disease!  I am just thankful that we have found this website and all of you!  Our purpose for joining is knowledge and information is POWERFUL!  We are searching for other Vietnam Vets that were exposed to Agent Orange or radiation that have this dreadful disease and are now fighting for  compensation from the VA.  This disease is service connected by the VA  for "ionizing radiation" exposure.  It is a battle for Agent Orange exposure.

My husband, Phil, 62 years young (but worked liked he was 30), spent 20 years in the Air Force and did 2 stints in Vietnam, a wonderful, loving, happy and grumpy in a good way, little grey hair guy, was diagnosed with Cholangiocarcinoma on March 30, 2006.

He began feeling sick back in 2/06, flu like symptoms, loss of appetite, fatigued, a slight pain in his side and a little weight loss.  March 6-22 he went back and forth to the doctor for blood work and tests.  March 23 the jaundice started. Admitted to the hospital, CT scan.   3/24 ERCP was done. Gastro dr tried twice to place stent but was unable to pass through the stricture.  She was clearly disappointed.  3/27 Radiologist put a drainage tube through Phil's liver to drain the bile and bag to collect the bile on the outside of his body.  MRI done.   He was in so much pain and sick: it was the worst thing I have ever witnessed.   3/30 Dr's tell us it is Cholangiocarcinoma.  The only chance for cure is surgery, but we need an experienced surgeon.  Gastro dr talks with a dr in Topeka, Kansas, Dr. James Hamilton (we HIGHLY recommend Dr. Hamilton; he has performed nearly 100 surgeries of this type (only had 2 death) and his assistant surgeon, Dr. Alley).   11 days in the hospital, still in excruciating pain.  4/3 released to go home so we could go to Topeka the next morning for consult with a surgeon.  4/4  WONDERFUL, GREAT NEWS!  Dr. Hamilton says that the tumor is resectable!!!  Thank the Lord!!  4/12 Whipple operation is performed:  Phil cancer is in the distal common bile duct, into the head of the pancreas. Dr. Hamilton removes the common bile duct, gall bladder, duodenum and the head of the pancreas.  Surgery was SUCCESSFUL!!  Now the long road for a full recovery.  24 nodes were taken - 3 tested positive, so chemo is recommended as a precautionary measure.
5/17 to 6/14/06  Four rounds of Gemcitabine (Gemzar) was all that Phil could handle.  He became terribly ill after each treatment, extreme fatigue, could not eat or drink (I was able to give him tube feedings (it was left in for this reason) when he was so sick, but that made him bloated, very uncomfortable and nauseated, broke out in rash on chest, arms, legs and neck, pain in his right eye to mention a few.  Now that he has been off the chemo and taking Prednisone (eating us out of house & home now) for a month, he has gained 10 pounds and is feeling better each day.  I thank God for each day and every minute we have together, even the rough times; he's still here and still FIGHTING FOR HIS LIFE!!  Never give up the fight.  There is always hope and miracles everyday.  All the doctors have told us that they didn't think Phil would even make it through the surgery, he was that close to death, but he did!  We will go to Radiation Oncologist, Dr. Stephen Smalley (world renowned for stomach cancer to name a few) on 8/7 to see if he thinks we need to do radiation.

Our thoughts and prayers are with you with God's blessings to all!
Mrs. Philly Willy (Barb)

smile Philly Willy - "Happy" of the Seven Dwarfs

Re: Looking for other Veterans with CC

Hello Barb!

Thank you for posting your husband's dramatic battle with this disease.  My uncle Al (see Al's Story in the Rememberance section) was also a Vietnam Vet.  My aunt briefly talked to the VA and they thought she might be able to get some benefits if Al's doc wrote a letter saying it COULD be from Agent Orange.  He wrote a letter, but it is probably to vague to be helpful.  Right now she is in the process of getting all his medical records and will proceed from there.

My aunt's email, if you would like to get in touch with her, is jennan@tds.net.

Best you you and your family as you continue this fight!  Keep us updated!

Tiffany Wilhelm
wilhe_tj@yahoo.com

Re: Looking for other Veterans with CC

Hello Tiffany,

First of all, thank you so much for sharing with us you

smile Philly Willy - "Happy" of the Seven Dwarfs

Re: Looking for other Veterans with CC

My dad was a medic in the Veitnam War and was just diagnosed with intrahepatic cholangiocarcinoma  Apr 06 .  His liver was unresectable.  So far only some pain and weight loss.  He still is golfing  3X a week and a great appetite.  He is on the Gemzar/Xeloda combo. So far it has maintained itself.  I keep hearing more and more about this dioxin being a part of this.

Re: Looking for other Veterans with CC

Dear Docherd,

I am so sorry to hear your dad has this insidious disease, but thank you for sharing with us about him.  It's great to hear that he is still very active and tolerating the chemo.  Hang in there!  My husband who had been so, so active, loved working and helping people, is now forced into disability due to his health.  Not easy for a man to lose his identity, but he is a fighter and will get back to normal again. 

Thank you for responding about your dad being a medic in Vietnam.  As you, we are finding out there appears to be many vets that have gotten this disease that were exposed to Agent Orange.  Has your dad filed for disability compensation yet?  If you are interested in sharing any info that you come across to support our claims, we'd be happy to share with you what we have gathered up thus far and other contacts.  Please let us know.

We saw the radiation oncologist yesterday and he said that he agrees that Phil

smile Philly Willy - "Happy" of the Seven Dwarfs

Re: Looking for other Veterans with CC

Thank you so much for this great website and all the wonderful people who post on it!

Well, I am thrilled to say, Phil had another CT scan on Wednesday and there is no apparent cancer since the last scan done in May!  Thank the Lord!  His radiation oncologist, Dr. Smalley wants to start radiation treatments in one week.  Next Wednesday they will measure his body and figure out how much radiation he will receive at each treatment.  He is scheduled for treatments Monday-Friday for 6 weeks.  The dr also mentioned that he had talked with his oncologist and that Phil may be taking a piil form of chemo in conjunction with the radiation.  We hadn't hear that from the oncologist, so they are going to discuss that further.  Dr. Smalley told us to buy some vitamin B-6 and Phil should take 50-100mg a day while in treatments.

We are praying that the radiation goes better than his chemo treatments went.  Everyone on here seems to tolerate chemo well, but that wasn't the case for Phil.  He is still suffering from a very bad rash.

We are wondering if anyone else that reads this has had radiation treatments and how they did with them?  How often did you have treatments?  Did you experience any side effects and what were they?  The dr has told us he is going to watch Phil like a hawk and if he starts getting too ill, he will quit.  Does this seem to be the case with others?  I'm assuming the dr is thinking more of quality of life than quantity.  Any input is appreciated.

Blessings to all.
Barb

smile Philly Willy - "Happy" of the Seven Dwarfs

Re: Looking for other Veterans with CC

Hello,

I'm glad to hear that Phil's latest CT scan has shown no more growth since May! That is wonderful.  My mother also did radiation with a pill form of Chemo also last year around July/Aug.  She had several CT scans throughout the year and they all looked pretty good. 

About Jan/Feb of this year is when the cancer started growing again and the different types of Chemo they tried didn't seem to help any longer.  Mom's latest CT scan has shown that the cancer has now spread.   She has a tumor on the wall of her abdomen and her intrahepatical CC now appears to be outside of the bile duct as well. 

I don't believe there are any side effects to radiation and mom tolerated the pill form of chemo very well.  I think the Drs said it was one that had the least amount of side effects! 

I believe Phil will tolerate this form of chemo better!  My thoughts and prayers will be with you and Phil through this next step to fight CC!!

Glad to hear you will not give up the fight!!!

Re: Looking for other Veterans with CC

My husband had 5 1/2 weeks of daily radiation and a continuous infusion drip of 5-FU.  He tolerated radiation well.  It wasn't until radiation was completed that the fatigue set in.  It took him a few weeks to rebound and at times he is still fatigued.  Radiation was this past January and February.  Best of luck to Phil!
Joyce

Re: Looking for other Veterans with CC

Hi all,

It has been awhile since I updated on Phil's progress, but I am very pleased to say that he is tolerating the radiation and Xeloda quite well; much better than he did the Gemzar.  He has a little nausea and some fatigue, but nothing like the side effects from the Gemar.   He had a couple of mouth sores, but they cleared up and went away by themselves.  He does get winded easily, so he has to take it easy and not exert himself too much.  He is more engaged and active these days, which is wonderful.  The doctors are very pleased with his ability to maintain his weight (back up to 157 pounds), so they all agreed he could have the feeding tube removed, so I took him back to the surgeon and had it removed!  He is so happy to be rid of it.  It really didn't hurt him; it was just bothersome to be flushed twice daily and the bandaged changed every day.  I think it was a constant reminder of the surgery.

Now we are working on redefining his life since he is unable to work (now on SSDI). This is so hard for him.  He used to work like a 30 year old in a 60+ year old's body.  It's time to slow down and enjoy life!  He and I love to fish, so hopefully we can spend a lot of time outdoors now that autumn is almost here and it isn't so hot.  Phil main hobby is collecting Hot Wheels (little diecast cars), so I am trying to teach him to use Ebay so he doesn't have to drive around and look for them.  He is unable to drive because of a visual cut he received from a stroke he had last year and all the medicines he is taking now.

All in all, things are going pretty good these days.  Phil still has a bad day every now and then, but who doesn't?!  Today is his 19th radiation treatment, out of 33, so he is well over half done!  The drs have decided not to do another CT scan until January or February, so I guess when he completes the radiation, we just enjoy life!

God's blessing to all,

Barb

smile Philly Willy - "Happy" of the Seven Dwarfs

Re: Looking for other Veterans with CC

It's always good to hear that things are moving along nicely.  Thanks for keeping us updated.