Topic: our journey

I came emotionally on to this site following a bereavment.However:the useful facts are-My husband Joel was diagnosed with cholangiocarcinoma during a routine mens health check-his LFTs were raised otherwise he was a fit 59yr old a runner and swimmer -never been sick.Ultrasound +ctscan showed cholangiocarcinoma stage4 metastatic disease.He had a metal stent inserted worked well as he never became jaundiced(his bilirubin was never raised)Chemo gemcitabine+carboplatin was offered as a p alliative measure.I supported Joel in his decision to give this a go.This was 7 weeks worth-2 cycles.It was useless and meanwhile a further scan showed the cancer had advanced .He died a month  later.Hi s deterioration was so rapid it was quite unbeleivable and very frightening for myself and my sons.The only contributing factor I could think of was that he had travelled overland in India in the 70s as many young Aussies did(?liver fluke).
                         Janet

Re: our journey

Janet,
I am sorry for your loss. Your case is like so many here where the disease was discovered too advanced for most treatments. I am so happy for you and your husband that he never experienced the horrible side effect of jaundice. There really is no relief from the itching and it is so miserable.

I cant imagine the emotional strain such a diagnosis and rapid decline caused. You didnt have time to digest it and come to terms with it before the worst was upon you.

Janet, I am very sorry for your grief and you are among people who understand.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: our journey

Janet,

   Butch served in Vietnam in the early 60's, and liver flukes are a problem there, too.  In addition, he had ulcerativer colitis and primary schlerosing cholingitis which also lead to CC. It has been proven , and accepted by our government, that those parasites do lay dormant in a person, causing cancer in the late 50's and 60's. I have heard only 3 specific causes given for CC - 1) hepatitus B,  2) parasites), and 3) ulcerative colitis, HOWEVER, there are many people writing on here who do not have  (or -their loved ones never have had) any of those 3 conditions, yet - they have CC. There is just so much we do not know yet about CC.
  About those liver flukes, though - I would love to see our Government post public service announcements, to the effect that Vietnam Veterans should have their bile ducts checked. An early diagnosis might save lives. I would dearly love to see that happen. In the meantime, I pray every day for a cure - or, at the very least - an early detection method, and an effrective chemo regime which would force it into remission.

   

Joyce C.

Re: our journey

Janet,

Thanks for sharing your story.

Jim's situation was similar to Joel's, except that even tho' they did every test imaginable, they could not find a cause for his problems until they did a PET Scan and liver biopsy. The tumors did not show up on any of the other tests. We found out 1 week before he passed on that what was causing all his problems was CC.

Because of the rapid deterioration any treatments they thought to try were ultimately not an option because of how quickly things had progressed. I have often thought that if he'd had the chance to try some of the treatments, things would have been different, but it appears that even tho' Joel was given that option, it still could not be controlled. This cancer seems to be an uncontrolable monster for which there are no answers.

Jim also was in Vietnam and did not have any of the other things that are said to contribute to the cause of CC, so I am thinking that in his case it was the liver fluke theory. I am told it is very prevelant in Asian countries. I'm not sure about India.

As you said, it is a horrible thing for everyone to have to go through, especially when it goes so quickly. I also have 2 sons & it has been very hard on all of us. Jim has been gone for 6 months & there are still times that I can hardly believe that this has happened to us.

Janet I know how hard this is on you as we are all going through the same thing,  Atleast here, we can share our grief and sorrow with others that truely know & understand what we are going through and hopefully begin to heal.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: our journey

Hi Janet, however you were when you came to us, it is still bittersweet to have you. Glad you found us. Teddy was in the Korean War and there have been Korean Vets on here too. I am sure his walks in the rice paddies didn't help! Unfortunately no one is hearing our pleas as of yet. I collected 35 letters from patients and caregivers and sent them to Oprah last fall. No response. So in February (last month) also sent them to Barbara Walters. The only celebrity who has had this is Walter Peyton (that we know) and they have their own foundation and hospital. When I came on this site in January of 2006 there were about 120 people on it and now we are at 850! We all wish someone would hear us!!!

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.

Re: our journey

To all I had the liver fluke theory right from the start for my husband.Joel actually travelled overland from Sydney to London-hitchiking,on boats,sitting on top of trainsetc all through southeast asia,India and so on back in the70s.I hadnt picked up on the risk to vietnam vets.Should I be writing letters to the papers here?
                                         Janet

Re: our journey

Janet,
   Yes - I try to warn anyone who is a veteran that they should have their bile ducts checked, because of the connection between parasites and CC. It is important that we make as many of them as possible aware of the danger - maybe we can save someone's life - wouldn't that be wonderful?

Joyce C.

Re: our journey

Ok I should write to the papers here because veterans and also veteran backpackers could be affected and perhaps western countries are not as aware.I know my friends and family had absolutely never heard of it except one old friend who had a Thai friend die very quickly of cc.He came to see us as soon as he could -he is in another state.
                                Janet

Re: our journey

Janet....I have learned that there is a high incidence of CC in Thailand.  I think that most of us had never heard of this disease let alone know of someone who had been diagnosed with it.  It is only through the Cholangiocarcinoma.org site that I have learned of others with this cancer.  I had been told it was a rare cancer and yes, breast cancer or prostate cancer for example, affects many more people but, I don't find it so rare when reading all these stories. 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: our journey

Janet,

I too am telling any one who will listen. Anything we can do to educate the public & get the word out about this horrible type of cancer can only help to promote more awarness & possible save some lives in the future.

I too have been told it is a very rare type of cancer but is very prevelent in the Asian countries. Almost everything I have learned about CC came from the wonderful people on this site. Here in our own little world it is not so rare, it is the common bond we have with each other.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.