Topic: dendritic cell therapy
My name is Iris and I live in the Netherlands with my husband Peter. Our two adult sons have left home and are doing fine with their jobs and in their own homes. We see them often.
Last year, my allways so sportive and healthy husband Peter (then 61) was diagnosed with Klatskin. Surgery was tried by a very experienced liver specialist, but he broke the operation off because the tumor had gone too far over the liver. A week later Peter left the hospital, in the meantime 10 kilo's lighter and with a life prediction of 2-3 months. A stent was put in via ERCP.
Though he realised how serious his condition was, he didnot put his head down. He started eating to regain his weightloss and a month later went back to work. Another month later he started playing squash again.
To everybody's surprise he is still with me. Having his old weight of 68 kilo's back, still working and doing his sports (every week he runs 5 km's). He bikes to his work every day (10 km's up and 10 km's down).
In September 2007 a second stent was placed via ERCP and he has the occasional high fever attacks. Taking anti-biotics allways brings it down within a few days.
It turns out Peter has a lot of antibodies by nature (he was a plasma ferese-donor during 5 years). And the specialists think that is what is keeping him so well, so long. But of course the timebomb keeps ticking.
Last month, a friend informed us about dendritic cell therapy. And two weeks ago we went to Dr. Gorter in Cologne for a serious talk.
We came back with mixed feelings. We believe this cell therapy has done a couple of wonders for brain tumors, but we can find no evidence that it also has performed a miracle for even one cholangiocarcinoma patient.
Last week I went through this website and was extremely moved by the story of Geoff/Jules. Then I followed Sara C's story. They were the only two that I could find that tried and try this dendritic cell therapy. Geoff didnot make it and reading the latest news from Sara, I also don't see a successful story. Her stent got blocked by the growing tumor.
I realise of course that you can never expect a 100% result, especially not on this nasty cancer. But the therapy costs a lot of money and then no result at all? That's the impression I have now. Am I wrong?
The beginning of June we have a talk with our specialist again (Peter is being controlled every month) and we will also talk about this dendritic cell therapy. After that Peter will make the decision whether to go on or not. In fact he has allready said that he is still doing so well at this moment, that he doesnot want to step into it yet.
From an American cancerforum I got a message that the Australian company Marshall Edwards Inc. is doing tests with a new drug, Triphendio NV-196. As far as I can find out, it is only tested on animals. But it is a drug that is typical for pancreas and cholangio cancer and testresults are promising. For a lot of our loved ones however, this will come on the market too late, I am afraid.
I realise this is quite a long story. I am confused and scared to lose Peter, as you will understand. On the other hand, we had a wonderfull year in which friends and family offered us so much warmth and love. Every day is a little miracle now and we promised each other that we won't become bitter. Our life together was so beautiful that we won't ever spoil that by grieving.
What I am in fact looking for, is one successful story on a cholangio patient having had a successfull dendritic cell treatment. Dr. Gorter is doing this therapy since 8 years! So where is the survivor?
Thank you for listening and I wish everybody all the strength and love they need.