Topic: Cholangiocarcinoma without symptoms or pain.

I just wanted to put in a post for those CC with untreatable tumours.

When my husband Ray was diagnosed almost 20 months ago he was given 6 months to live and I scanned this site for information about the disease and what treatment we could have to make things better. Although this site is extremly informative and helpful, as a newcomer it is also very frightening.

Unfortunately his tumour was 8cm intrahepatic with satellites in both lobes when he was diagnosed. We discussed treatment with the oncologist and we decided as Ray didnt have any symptoms we would not go down the chemo route until he did. For the next 18 months we spent the time going places and seeing people and just doing whatever we wanted.

Two months ago the Oncologist said the had "lost his nerve" as the tumour had grown to 17cms and Ray started with Gemcitabine. The only side effects he had with this was tiredness on the second day, and at the next scan showed it was working and the tumour had stopped growing. However three weeks ago he developed Jaundice, and they tried a stent, but this didnt work as the liver was already not working properly. Consequently he was taken into hospital two weeks ago and passed away quietly last Sunday.

The thing is that Ray did not have any pain at all from this CC, only discomfort over the last few days due to fluid retention and acites.
When you are first diagnosed, it is quite scary reading about everything people are going through, and all the pain and suffering.
I just wanted to say it is not always like that. I know we have been extremely lucky, Ray was not afraid of dying but was afraid of being in pain for a long time and it never happened.
No doubt many people do battle this disease with great bravery over many months or years, but there are instances when the end is swift and painless.
So please dont worry too much about what will happen during the course of the disease as we did, or just wait for the illness to take hold, forget about the future as much as possible and just enjoy the time you have at the moment.
All my love and prayers to you all.
Sue

Re: Cholangiocarcinoma without symptoms or pain.

Sue, I am so very sorry for your loss of Ray.  Thank you for taking the time to share your story with us.  I am glad that you had quality time with Ray before he passed on to Heaven.

I also have painless cc, so your words are encouraging.

My love and prayers are with you as well.

God bless,
Lisa

Re: Cholangiocarcinoma without symptoms or pain.

Dear Lisa,
I hope and pray you will stay well. I have just been on your website, what a lovely smiling face you have. I am just looking for a suitable picture to put here once I find out where Ray filed all the pictures!
Love Sue

Re: Cholangiocarcinoma without symptoms or pain.

Add another to the list of cc with virtually no pain or symptoms. My dad took an Alaska cruise and returned home just 5 weeks before he passed away. And really - up until then and even 2 weeks after his return there were minimal symptoms. And, most symptoms were chemo/treatment related.  As far as pain goes, he had little - even as he was finishing his cc journey.

Sue,
My sympathies for your loss. May you find comfort in knowing your husband is at peace.

Bz

Re: Cholangiocarcinoma without symptoms or pain.

Thank you Baz.

Re: Cholangiocarcinoma without symptoms or pain.

Hi Sue,
Very sorry to hear that your husband died. I must be a very difficult period for you. I am happy to hear that at least he didnot suffer.
My husband has this disease and got a life prediction of 2-3 months. This was in May last year. He is still with me now, but I can see we have taken the turn downwards now.
I am silently praying that he too will not suffer. He is not afraid to die, he says and also not to be in pain. But he so much wants to stay with us and the acceptance that his days are limited is heartbreaking.
I wish you all the strength you need and hope very much you have lots of nice memories to keep in your heart.
Iris (the Netherlands)

Re: Cholangiocarcinoma without symptoms or pain.

my husband cp is 18mos out from whipple doing great post surgery  great recovery until 6mos ago when ca19-9 statred going up  tumor in surgical bed showed in may  now having rad and chemo  still no physical symptoms from disease  ca 19-9 this week is 3000 keep in mind post surgery it was 40    any advice on when to expect physical changes   jan

Re: Cholangiocarcinoma without symptoms or pain.

Hi Jan, I had responded to you prior about Teddy who is 76 now and had a Whipple 3 years ago. The CC returned where his duodenum used to be last April. He went through 5 weeks of radiation and will now have cyber knife in December to get rid of the rest of the cancer. The radiologist  has told us he WILL be cancer free in January when he has his next PET Scan. He has never had chemo as 5 doctors have said it will not help and will only bring him down.
Everyone's case is different and that's about the only thing we can count on with CC. I guess I am not understanding what spot your husband's CC returned to. For Teddy the only physical signs were tiredness and a CA9-19 count that started to climb. He is watched by his Oncologist and every 3 months has a visit to him with LAB work which includes CA9-19 and Bilirubin. Then every 6 months he has a CT Scan. This vigilance is what caught the second bout so quickly. Before the Whipple he totally jaundiced and that was the only symptom. This is why we call this a monster disease.

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: Cholangiocarcinoma without symptoms or pain.

HI Sue,  My sincere condolences.  May Ray rest in peace.  Unfortunately this CC is giving me several different complications with pain included.  But hopefully the Pain Manaement tean can keep up.  It is so wierd as I have manage to keep it away from major organs and it decided to got soft tissues and bone route instead. Will just keep on motivating and hope this Tarceva does some good.
God Bless,
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Cholangiocarcinoma without symptoms or pain.

thank u lainey  CPs recurrence is being treated as pancreatic although it presented in his bile duct   the area was described as th e surgical bed post whipple     he reacted to 5fu with facial rash that involved his throat     making him unable to eat for 12 days  so his dr discontinued that for now    we see the dr tomorrow        we will have PET SOON AFTER THANKSGIVING  JAN

Re: Cholangiocarcinoma without symptoms or pain.

So, sorry to hear that, Jan. You just might want to ask the doctor about cyber knife IF it cancer is contained. They probably will be able to tell you more and give options after the PET Scan. Please keep us posted.

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.