iris-a
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Hi Barbara,
Last year May, after a broken off surgery, my husband got 2-3 months as a life prediction. That is a year ago now. Hang in there, don’t give up. Try to do the things that make your lifes worthwhile, let him eat well and ask for second opinions. We are enjoying every day as a gift and it makes us happy! Good luck to you two.
Iris.Hi Sarah,
As caregiver I also experience how good it is to visit these forums and get help, suggestions and fellow-feeling. I can understand your fear. My husband got a prediction of 2-3 months and it is 13 months now and he is still with me. My fear now is growing instead of only being happy that he is still here. So I know the feeling.
Since you’re American, there is another great website on cancer and they also have a line “bile duct”. It is http://www.cancercompass.com. A lot of questions there are asked and answered and also a lot of mental help is given to each other. Maybe you find there what you are looking for too.
Wishing to all the best and hope to hear from you a long time more
Iris.Susan, I am very sorry for you and Nikki to lose your son and she her husband so young. There is nothing to ease your pain, but time. I hope you have many beautiful memories so you can remember him. “He who is remembered did not die, he just went to another room and once you’ll meet again”.
Iris.Hello Joyce,
First of all I want to wish you and your husband all the best. Seeking second and third opinions is never a bad thing. Some hospitals and doctors dare to go further than others.
My husband was diagnosed with cc last year May. Here in Holland the rule is, when there are metastasis, stop surgery. With my husband there was only one and they took it away for further investigation. Then they found his liver was too far infected and they broke off surgery.
Reading stories from all over the world, I have the feeling that your metanasties indeed are reason to not start surgery. The chance is huge that the spreading of the cancer speeds up when they touch them, whilst the bileductcancer itsself is normally very slow growing.
I very much hope things can be different for your husband.
Greetings from the Netherlands,
Iris.Hi Kim,
Being the wife of a cholangio patient who also has been extremely healthy his whole life, and after been given-up last year May, I feel very close to you in your pain. And now how difficult it is to stand by and watch helplessly.
However, I also have good things to say. My Peter is a fighter, and in stead of the predicted 2-3 months to live, he is still with me a whole year later. Though there are some nasty fever attackes, he works again, sports again (squash and running) and since the outcome of his illness, we enjoy every good day and there have been lots, this year. Concerning appetite: to let Peter regain his 10 kilo’s weight loss, I bought, cooked and baked everything he likes and gave it in small portions. But every two hours I had something: a soft boiled egg, 10 strawberries, a cheese tosti, a little plate with porridge, and so on. Through the weeks he started eating larger portions. Meat he doesnot like so much anymore, instead I make him fish, omelets, mushrooms.
I hope your husband will do as well and shock the doctors by staying so well, so long. If you are able to enjoy the quality time together, it will help cope with the uncertainty and I strongly believe it will give extra time.
I wish you and your husband strength and all the luck in the world.
Iris (the Netherlands)I very much agree with Marion. We live in a society that wants to earn more money every year, make higher profits every year, buy more expensive things all the time. All is about money, not about humanity. Research? O.k., but the outcome must be profitable.
In our case, the bile duct cancer is only a low percentage of all cancers (7%). To spend a lot of money in research is not going to put researchers and money-providers high on the list of lifesavers or moneymakers.
I dived into the life of Dr. Coley of the Sloan Kettering Institute in N.Y. At the end of the 1800’s he accidentally discovered how well hyperthermy worked for brain tumors. Doctors from all over the world came to him to learn more. Death rate in his hospital on brain tumors went down. Then radiology and chemotherapy were discovered. That was the chance for hospitals to get some shiny, beautiful new devices and show off the newest technologies. Death rate went up again, but nobody seemed to notice. Dr. Coley died and now, in 2008, even Sloan Kettering doesnot even know anything about hyperthermy any more. After having written to them asking a number of questions I think they don’t even remember his name.
For all of us, patients and caregivers, this is tough to chew on.
Therefore, fully live and enjoy every good day.
Iris.Joel, very sorry to hear about your mum. Hope some doctor wakes up and at least can give her a stent, by ERCP or other way. That would release the suffering very much. Wish you all the strength you need.
Iris.Dear Diana,
Thank you for your message. I am very sorry to read that your husband also has this terrible disease. I hope his second round of chemo will do good things for him. Isn’t it hard to stand by and not be able to do anything else than support?I would like to get something straight about Dr. Gorter. Peter (he is a chemist and also did clinical chemistry) and I absolutely don’t think Dr. Gorter is a fraud. He believes strongly in what he is doing, namely trying to up the human resistance against cancer cells. When we talked about cell therapy with our own specialist, he said “I have seen remarkable things happen with cell therapy”. We know for a fact that Dr. Gorter has treated, a.o., people with brain tumors and therein had some remarkable results. But the cholangiocarcinoma is quite another thing and we have not seen remarkable results with this type of cancer.
I too had quite a job to come so far as to an appointment with him. He or his medical institute never answered my mail and also a telephone call was answered only one week later. But then, an appointment was soon made. Meeting him, we came to understand that he is an extremely busy man. Literally more a businessman than a doctor. He is away a lot, to congresses and giving lectures. He also travels to Egypt to initiate a clinic there. But we feel that undermines the doctor-patient relationship and care.
That was the reason I went on searching. We had about more questions than answers, coming back from Germany. In fact I feel that coming on this board, and reading everybody’s stories, a lot of my questions have been answered. At this moment there seems no cure for this type of cancer and the new drug that is in development in Australia is not an option yet.Diane, I hope you and Brad will have a lot of good time more. Will you keep me informed about how you two are doing?
All the best,
Iris.Hello Sara,
Today I posted my introduction to this forum. You can read there about my husband Peter. I think you are going through a hectic time again. I hope the doctor can provide you with another stent, so your direct complaints can disappear. I would like to wish you all the best and hope you will be on this forum again soon. Thinking of you,
Iris.Hi Kris and Jeff, thank you very much for your answering. Kris, I think you can use a lot of luck too. From now on I’ll try to follow everybody’s trail. There’s nothing I can do to make anyone better, but I have the feeling that it helps when there are people who are thinking of and with you.
Iris.
