May 24, 2008 at 12:34 am #20113lisaSpectator
My treatment is going well – started with 6 weeks of radiation in October along with ongoing chemo. The tumor shrunk 50% by January, so I had exploratory surgery in March. Unfortunately, after they opened me up, they discovered that the tumor was unresectable due to location and that it was wrapped in and around the inferior vena cava.
So it’s back to chemo (Gemzar and Xeloda combo). So far I’ve stayed relatively healthy, but a lot of that is due to my age (45) and that I’ve got no other health problems.
Besides cancer, I’m perfectly healthy.
LisaMay 23, 2008 at 7:38 pm #20112DianeCGuest
Lisa — Brad’s oncologist is Dr. Vincent Picozzi at Virginia Mason. We interviewed 4 oncologists before picking him, one of which was Dr. Gold (at Swedish?). One other oncologist we were impressed with was Dr. Sam Whiting at SCCA. We liked them all, but chose Dr. Picozzi because he had the most aggressive treatment approach.
Lisa, I hope your treatment is going well. Is there something that is working well for you?
DianeMay 23, 2008 at 2:20 pm #20111lisaSpectator
I’m in the Seattle area, too. May I ask which hospital and doctor is treating Brad? I’m at Skagit Valley Hospital, which is with the Seattle Cancer Care Alliance. My doctors are Dr. Philip Gold (in Seattle) and Dr. Bob Raish (in Mount Vernon)
My best to you and Brad,
LisaMay 22, 2008 at 3:25 pm #20110DianeCGuest
Dear Iris — I do wish to clarify that although Dr. Gorter was certainly uninterested in our quest, the issue of dendritic cell therapy is most valid. We learned of dendritic cell clinical studies going on right here in Seattle. And unfortunately, the study was closed to new patients. I’ll be anxious to learn results of the studies.
As you are well aware, this type of cancer is so rare that there are few clinical studies available. As soon as Brad’s oncologist reaches the monetary target, he is going to launch his own clinical study. We are hopeful that this study will help CCA patients in the future.
Iris, I admire you and everyone here on this site for challenging this ugly disease. Here one can find hope, sympathy, empathy, new ideas, and support.
DianeMay 22, 2008 at 7:20 am #20109
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.May 22, 2008 at 2:15 am #20108DianeCGuest
Dear Iris — Although a frequent “lurker” on this cite, I’ve not posted before. My husband, Brad, has CCA, diagnosed in 2006. We traveled to Mayo Clinic in Rochester, MN, USA, in 2006 to see if liver transplant was an option. Unfortunately not. The cancer had spread to lymph nodes. Brad is currently going through his second round of chemo here in Seattle, WA.
We read about Dr. Gorter in “Ode” magazine. We tried on numerous occasions to contact him. We were willing to travel for a cure. We were extremely disappointed to find that Dr. Gorter didn’t reply, nor did his office.
My personal opinion is that Dr. Gorter is a fraud. Our doctors here in the U.S. also tried to find out something about “Dr.” Gorter and dendritic cell therapy. The colleagues in Europe to whom they communicated said, don’t waste your time.”
I sincerely wish that your husband remains in good health. It seems you are researching all possibilities, and I wish you only good luck!
DianeCMay 21, 2008 at 3:25 pm #20107
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.May 21, 2008 at 1:50 pm #20106jeffgMember
Hi Iris, Love your attitude and pray that Peter keeps the ball rolling for a long time. Can’t help with any infor about Dendritic cell. I’m thinking along the same lines as Kris. I also agree there are some novel treatments around the corner; only if they could push things forward a little faster or at least let volunteers try it under a compassionate request as a last resort effort to save there life. Best wishes to you and Peter.
JeffG.May 21, 2008 at 10:01 am #20105devoncatSpectator
Welcome to the site. It sounds like your husband is a real fighter.
Statistics….blah. We are a small group. I had this discussion with a dr in nc and we basically came to the conclusion that every single hospital dealing with this cancer would have to work together to get real numbers.
This is a rare cancer. I doubt many cc patients have had this type of therapy and those that have are usually late stage people who are trying the last hope. I would love for a study to be done on this therapy on early stage people to see how it works over time. Anyway, I dont think you will find the answers you need because of the cancer you are dealing with and the path most people take on this journey. Best of luck though. It cant hurt.
KrisMay 21, 2008 at 9:40 am #1247
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.
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