Topic: Husband newly diganosed

In late May my husband started feeling fluish and it wouldn't go away.  Then he got jaundiced and ended up in ER on Memorial Day.  They did an ultrasound and a CT scan and found a mass on his liver.  After that he went to his VA doctor and they did a biopsy.  What they found was moderate differentiated cholangiocarcinoma of right lobe of the liver and right bile duct and right common bile duct, Bismuth classification type 3, T3 Nx Mo stage 3, unresectable.  The doctor said he has about a year to live.  With chemo (which he is trying even though they tell him he only has a slim chance it will work) he could add weeks or months but not much longer.

He served in the Marines in Vietnam in 1967/68. After being in Vietnam for about 10½ months, he was at Yankee Station in Con Tien on the DMZ and a mortar round landed and went off near him in his foxhole. He was unconscious for five days on the USS Repose hospital ship. Then he was sent to Hong Kong and then he spent a few weeks at Great Lakes Naval Hospital in Illinois before being sent home. He got service-connected Hep C and went through treatment for that for 48 weeks from 9/2002 to8/2003.  Now this has shown up and we believe it is from liver flukes that have lived in his bile duct since Vietnam.  I have been reading about a lot of Vietnam vets coming down with this type of cancer now.

I am grateful to find and be a part of this group and know that I will be on this site a lot in the future trying to cope and find out how best to help my husband.

Re: Husband newly diganosed

Hello LadyDI and welcome to our remarkable family but sorry you had to find us. And the first thing is a big thank you to your husband for serving this country! I would get a 2nd opinion at a large facility that has treated quite a bit of CC. Mayo in Rochester is a good place to start as it in not that far from you. We do not accept that kind of DX as it sounds like the ONC gives up before he even starts. That is a no-no! We also do not believe in time frames as we were not born with expiration dates! We believe in hope and miracles and we have the members to prove it! You husband fought in 1 war now he is in another and it's time for a different strategy. Please look in to another opinion and know that you have come here, to the best place to be for help and advise with the most caring people from around the world. Please keep us posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by thebompie4 Wed, 31 Jul 2013 13:30:50)

Re: Husband newly diganosed

I agree with a 2nd opinion always.

My husband is Stage 4 (with mets to lungs and lymph nodes--he is 44 yr old)

He has tolerated VERY WELL (so far) 5 months of gem/cis (chemo) and is feeling pretty darn good!

He is not (ever) a candidate for surgery, both drs had the same opinion, same treatment and same "you should have XXX time left"

BUT, both drs looked at him in the eye and said "YOU Kyle (my husband are
the only Kyle that has ever had this disease...so regardless of statistics,
YOU (kyle) will MAKE YOUR OWN NUMBERS" (in regards to "time left").

hang in there, its a hard thing to hear, and some very up and down days.
being a caregiver is also very hard and we (caregivers) often get
overlooked at what WE are dealing with as well!.

Best wishes to you and your husband!
Dorien

Re: Husband newly diganosed

Hi LadyDi,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husbands diagnosis as well. But am glad that you have joined us here as you are in the best place for support and help and you can expect a load of each from all of us. And my thanks to you as well for sharing everything with us too.

As Lainy has said, a second or third opinion re surgery could be a good idea and there are many recommendations as to seeing a doctor or surgeon that has vast experience of CC patients here on the site should you want one. We have had members here who have been told that surgery after diagnosis was not an option only to seek further opinions and then be told that surgery could be done. So please do not give up hope or stop fighting either.

There is much information out there regarding liver flukes and especially so with regards to Korea and Vietnam Vets. I don't know if you are on Facebook or not, but if so they have an excellent group on FB for Bietnam Vets and CC. Here is the link -

https://www.facebook.com/pages/Vietnam- … 0339017522

You will find a lot of specific info there from Vets and their families, and I am sure that you will be hearing from a few on here as well soon.

I hope that you will indeed keep coming back here and I look forward to hearing from you more as well. Please know also that we are here for you and will help as best as we can.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.