March 22, 2017 at 4:51 am #89363
Lourdes….it seems that the VA is taking each cholangiocarcinoma case individually. If only they would admit the connection of VA Vets and this cancer.
MarionMarch 21, 2017 at 10:57 pm #89362lourdesaliciaParticipant
Just providing a link to an article that was published on veteran’s day of last year in order to bring further awareness on where this link to Vietnam veterans is today: http://bigstory.ap.org/article/2475c351831b47a397830dcc85c10c6f/still-fighting-vietnam-vets-seek-help-rare-cancer
You can absolutely find more information through the above facebook link connecting to Anne Petitti.January 5, 2017 at 5:03 am #89361
Finally, the Department of Veterans Affairs (VA) recently acknowledged that certain diseases showing up in Vietnam veterans is directly linked to Liver Flukes.December 20, 2015 at 7:06 am #89360
ebacon…..a warm welcome from me as well. As it so happened with your Dad, this cancer likes to metastasize to the spine region. Happy to see that he was treated aggressively with a good outcome. I assume that his current chemo regimen consists of gem/cis, correct?
You mention your Dad’s testing ruled out one specific drug. Did he have a biopsy, which in turn has been analyzed for underlying alterations in his DNA, called comprehensive genomic testing?
So happy you have found us because; we are in this together, all the way.
MarionDecember 20, 2015 at 5:40 am #89359lainyParticipant
Ericka, sounds like you are doing all the right things, good work. Please keep us updated on how Dad is doing.December 20, 2015 at 5:19 am #89358ebaconMember
Thank you for welcoming us. He has had 3 different doctors agree on the same treatment, the spine surgery did indeed help him with his pain. The only pain he has now is in the one from where the radiation hit the tumor in the sacram. The doctor has told us that now the bone has to grow in that area again. It will take time but eventually the pain will subside. He is diabetic so we give him glucerna, when he doesn’t want to eat. We are in San Antonio, Texas. We are hoping that we can find a new medicine that will stop this cancer in its tracks.December 20, 2015 at 4:25 am #89357lainyParticipant
Dear Ericka, welcome to our remarkable family but so sorry you had to find us. My first question is, has your Dad had a 2nd opinion? We are big believers in 2nd, 3rd even 4th opinions. Also curious as to where he is being treated.
Yes, it is always a huge shock at first. like getting hit with a baseball bat in the stomach. When first diagnosed you will start out walking slowly and before you know it you will be running with the pack!
Did the surgery help the pain in his back?
Have you tried any nutrition drinks for him? My husband’s favorite was Carnation Instant Breakfast, the vanilla and I would blend in a banana. This can be had with a meal or as a meal and has all the nutrients he would need. He can even have it 3 X a day.
I am posting a link below that you may find helpful. Please keep us posted on Dad’s progress as we truly care and Please thank him for his service!December 20, 2015 at 3:59 am #89356ebaconMember
Hi I am the daughter of Albert Preciado Jr a Vietnam Veteran who was just diagnosed on October 19th with Cholangiocarcinoma. Today is exactly two months and he has been through spine surgery to remove a tumor that was pressing the nerve and causing unbelievable pain for him. He has had two rounds of radiation to the tumors in the neck, hip, sacram, tailbone, and the area in the spine where they removed the tumor. He just started Chemo for the tumor in the liver. He is in shock as well as the family. I am one of two daughters and there are 7 grandchildren between us ranging from 20 to 7. It has been very hard watching a strong man who was always on the go to a man who has been stopped in his tracks. He has lost so much weight and now uses a walker to get around. He did not qualify for the experimental drug that they tested him for so we are hoping the chemo wil help prolong his life.October 1, 2015 at 3:54 am #89355
Congratulations, you did it. You are a member of the blogging world.
Oh, before I forget, you may want to repeat your message in the “Introduction” thread of our site. Here is the link:
MarionOctober 1, 2015 at 3:27 am #89354rumybabyMember
Well it looks like I am into the forum so I will sign off for today as it is late. I will check in tomorrow! Thank you Marion!October 1, 2015 at 3:25 am #89353rumybabyMember
Hi, I am new to this and have never really blogged before.
My fiance is 49 years old and has stage 4 CC. He is a veteran USArmy, Combat Medic.August 12, 2015 at 5:25 am #11594
Welcome to our site. We are glad that you have found us and are happy and pleased to engage in continuous interactions with patients, caregivers and friends of those that have served our country. Here you will find a large group of people addressing issues inherent to the disease of Cholangiocarcinoma; all eager to share thoughts and advice you based on their own experience and knowledge obtained.
The Vietnam Vets and Cholangiocarcinoma or Bile Duct Cancer Facebook site offers additional resources.
There are two pages to this group.
1. Participation and dialog
2. Closed group pertaining to research and approved claims.
Anne Rossi Petitti verifies your information and links you to the closed group page.
Non-facebook users wishing to receive research information, may e-mail Anne: firstname.lastname@example.org Please use Vietnam Vets and/or Cholangiocarcinoma in the subject line.
You may also call: 330-348-0506. Please leave a message and Ann will return your call.
Welcome and hugs
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