Dear Jules and dad

Thank you for your advice, I havent posted for a while because dad has been in hospital. And sadly he died last thursday morning with all of us standing around his bed at home. He wanted to die at home so wednesday afternoon we managed to get him home to fullfill his wishes.

As this was not enough I have got a bloodtest back that says my ca 19-9 number is 87 and the normal is below 27 so i am not afraid I have cancer too. Unfortuneately I got the message yesterday so I can first contact my doctor on monday. I am very afraid. We just burried my dad today and I am completely numb just waiting for monday so I can get answers on what procedures I have to go through.

Thank you for your thougths

Randi

Dear Patricia.

I am so sorry to hear that your husband is not here anymore. You are so right it is an awful disease. My dad is beginning to get jaundiced again but he is not keen on being admitted to hospital so one day goes by after another. So I dont know what to expect. Last time he was in hospital they said that they didnt think his body could tolerate more ercp procedures so we dont even know if they would consider changing a drain if he gets more jaundiced

I wish you all the best and please keep writing telling how you are doing.


summer greetings from Ranner

3

(7 replies, posted in In Remembrance)

Dear Patricia.

I am in chok I have first this minute seen your post. I am so sad for you that your husband is no longer here. By the date I can see it is already a month ago. I hope you are doing ok and taking care of your self. I will send you good thoughts and wish you all the best.

Love Ranner

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(42 replies, posted in New Developments)

Hello Patricia.

Good to hear that you are doing better, but I know it is wearing out to be a caretaker. Many times I do things for others instead of doing things for my self.

Lovely that your husband had the strength to out to a concert, were there no trouble with lights?

My dad is not all that well. I think the stents doesnt work properly. He has come down with fever a few days ago and the hospital has prescribed antibiotics but they dont want to see him. When he had fever in january they cultured his blood to give him the right antibiotics but they havent done this this time. And the outside drains bleed the other days and mum called them and they said that he should stay home. But of course we get worried when it is bleeding etc so we would prefer that they had said that we could come by for a quick look at it. The hospital said that the home nurse should close the tube so the bile should go in the intestine, I think it might have been to early to do that since a lot was coming out in the tube/bag, but they closed it. We are going to a talk at the hospital on tuesday, so hopefully all our questions will be answered then.

I never thought that ascites could go away without draining when it first had come? But hopefully they can find the source and stop it, I have heard that it should be very uncomfortable to have and in some cases make it difficult to breathe.

No we havent decided on pdt yet I am corresponding with different doctors abroad trying to find a hospital for instance in germany close to the danish border, so transportation will be less of a problem.

Have a nice weekend.

Regards Randi

5

(42 replies, posted in New Developments)

Dear Patricia

I am getting worried since it is a couple of days since I have heard from you. Is everything ok?

Kind regards

Randi

6

(42 replies, posted in New Developments)

Hello Patricia.

Is your husband feeling better from the nausea a few days ago? I really hope so.

Dad was cancelled on tuesday but got in on wednesday. I earlier this week I had contact to one of the radiologists in the hospital and I sent him material on PDT. He was very interested and invited me to dads procedure so we could talk.

Dad got re-arranged the biliary tube that goes out on the outside and they have tried to remove the bag so they think it will drain internally into the intestine. I hope so, he was discharged today but had a slight fever yesterday evening, they think it was just because they had done the procedure. This morning the fever was gone.

I wasnt at rounds this morning but one of the other doctor had said that pdt wasnt an option for dad, but since they only have read the two articles I have sent I dont think I can trust that. It will be up to a doctor with more knowledge to say that.

Have you paid for the procedure yet, I am interested in the amount it would cost. Luckily your husband was admitted for long.

I wish you everything good in life.

Randi

7

(42 replies, posted in New Developments)

Hello

Thank your for your best wishes, they go right back to you. Got to hear your husband is feeling well.

I can certainly understand "the no more doctors". I have heard that the shii take some kind of mushroom should boost the immune system but I have not researched it. Whether alternative or hospital treatment it is a jungle out there.

I am a little confused when you talk about stent and biliary tubes I always thougth it was the same thing. would you please explain the difference to me.

Is it hard to remember that your husband cant have sunshine right now? I would guess one could forget it and just go to the mailbox etc. Are there no problems with indoor ligthing?

Have a nice weekend.

Randi

8

(42 replies, posted in New Developments)

Hello again.

Dad went to the hospital today for bloodwork and then they went home. Later the doc called that they wanted to see him but he wont go until tomorrow. Doc said the bilirubin is increasing rapidly but gave no numbers.

I tried to mail rainer wulf in germany but a failure notice came back. so I tried the mail for the headoffice and he replied that he had sent my mail on to someone else and they have not replied yet.

How did the procedure on wednesday go, it was a change of a stent or a new one.?

Are you both home now? Has there been no problems after the pdt?

Good weekend

Randi

9

(42 replies, posted in New Developments)

Dear Patricia.

Thank you for your answers. Hope everything is going well.

After being cancelled twice on to seperate days dad got a new stent in on tuesday. His bilirubin is high so he is a bit jaundiced. They will do bloodtest on wednesday to check. But actually we might be going to the hospital later to night because he is having a fever. It could be an infection or a reaction to the new stent. But he number or CRP c-reative protein is also too high, it is marker for infection.

We haven't decided on what to do regarding PDT, but if the stents keep on clogging it must be the answer. I have a plan to research what it would cost to the a doctor from abroad to come here and do the procedure. I guess doctors here could be interested in learning about it.

Have a nice weekend.

Randi

10

(42 replies, posted in New Developments)

Dear Patricia.

Good to hear that the procedure went well. Was it done under general aneastethics (wrong spelled I guess) and how long did it take?

Was it Steve himself that perfomed the pdt?

Now he has the stent placed tomorrow and the home you go? Is there any control appointments planned?

Really good to hear that you both are alright.

Randi

11

(42 replies, posted in New Developments)

Dear Patricia.

I will pray that the procedure will be succesful this will give you longer time together.

I have asked my dad if he would try pdt but he decline since it is in england and he doesnt speak english.

Would you tell me the name of the hospital where you are having the pdt.

Are you having to pay yourselves could tell an estimated amount.

I cross my fingers for you. My dad is jaundiced again and is going in on monday hopefully to have the stents replaced allthough last time the said that they couldnt changed them anymore because the tumor is hard as wood, so it is very difficult for them.

Just had a thougth is your husband in room without other patients so now one accidentaly lets sunshine in?

Best of luck to you both

Randi

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(42 replies, posted in New Developments)

Thank you for the adress info.

How is your husband doing and how are your plans now? Has he had the PDT yet.

Looking forward to hearing from you.

Best wishes Randi

13

(42 replies, posted in New Developments)

Hello Patricia

Has your husband had the photodynamic treatment yet?

I would to have the adresses for the places you have researched that could offer photodynamic therapy in Europe.

I hope your husband is feeling better.

Kind regards

Randi

Hello Susan

My dad has cholangiocarcinoma cancer of the bile ducts and has been diagnosed since february 2005 . He has had chemo for 7 months last year but in november they said tumor is progressing and stopped chemo.

He is not getting better and like you I am thinking about taking time of from work to be with my parents. Here in denmark I can even get my normal salary during but it requires the accept of my father and I feel it is the same as saying that he is soon leaving us so that might take away all spark of life in him, the little that is left.

Just wanted to let you know that you are not alone

Kind regards Randi

15

(42 replies, posted in New Developments)

Hello Patricia.

Sad to hear that your husband has been admitted but at least he is being taking good care of at the hospital.

I am very interested in the adresses for the PDT trial you mentioned starting. Is it this trial your husband is going to take part in?

All my best wishes for you and your husband.

Kind regards Randi, Denmark

ukmember wrote:

There is a clinical trial starting in the UK at University College Hospital in London. We have also researched availability in Europe.
It is also available in France and in Holland. If you like I can send you the addresses.

PDT is not a cure but it has the effect of shrinking the tumour sufficently to allow bile to drain, because as the oncologist pointed out to us, it's not the tumour that kills but the effect that it has on the liver when bile and other toxins cannot drain.

16

(42 replies, posted in New Developments)

Hi

Where are you patricia going to get the photodynamic therapy is it a clinical trial?

Randi

Just to present myself.

My father age 64 was diagnosed with cholangiocarcinoma and spread to the liver in february 2005. He was offered chemo but not as a cure. He went on the chemo regime with oxaliplatin and gemzar and xeloda. His tumor regressed sligthly but has now progressed and they have stopped offering chemo. So now I am desperate for starting a new battle against the tumor. But here in Denmark if one thing doesn't work you are not likely to get the chance to try another thing.

My dad has also lately had violent shivering because the temperature rises so quickly. He was admitted to hospital on jan 14th and had one ercp and three tries of ptc and lots of antibiotics Now the have told that they can no longer do either because it is to difficult. So they sent him last thursday. Saturday evening admitted again because of fever. They opened the ptc-drain and bile is coming out in a bag. I would go with jules it might be bile trying to get out but cant it causes fever quickly.

Randi

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(27 replies, posted in Introductions!)

Hello again

Thank you for your replys I found both the chemo site and the sits for trials. But I live in Denmark, Europe and our lab results are for instence measured in bilirubin lower than 22 if you are healthy. But in USA it is to be lower than 3 mg/dl I believe. How can I convert these number into european numbers.

Kind regards

Ranner


stacie wrote:

Ranner,

Have you looked at the chemotherapy spread sheet?  You might have your Dad take that in to his oncologist and see if he would be willing to try a different combination.  Their are lots of oncologist trying lots of different things.  Those are all drugs that people with cholangio are wither using, are being used in clinical trials or researchers are looking to use them against cholangio - ofcourse, nothing proven, but nothing seems to work for everyone with this disease. 

The other option is to get him into a clinical trial.  That spreadsheet is also available (under the blog heading) and that may be his best shot, especially if his oncologist doesn't feel like there are other options - there are always other options.  Good Luck - let us know how it's going.

Stacie

19

(27 replies, posted in Introductions!)

Forgot to write what a great initivative this website is!

20

(27 replies, posted in Introductions!)

My father age 64 was diagnosed with cholangiocarcinoma and spread to the liver in february 2005. He was offered chemo but not as a cure. He went on the chemo regime with oxaliplatin and gemzar and xeloda. His tumor regressed sligthly but has now progressed and they have stopped offering chemo. So now I am desperate for starting a new battle against the tumor. But here in Denmark if one thing doesn't work you are not likely to get the chance to try another thing.

Any advice would be much appreciated