sarac
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Celebrated my 1 year survival last month! But soon found out that the cancer had grown over the top of my permanent metal stent in the bile duct, and was choking off the flow of bile again.
I’ve been seeing Dr. Nesselhut since Sept. 2007, and had 5 treatments, with NDV and dendritic cells. Can’t do hyperthermia because of the metal stent.
My local doctors will try to get some tumor tissue when they put in a permanent extension of the stent that they placed a year ago. But Dr. Nesselhut would like 1 cubic centimeter of tumor tissue to get the stuff they need to load the dendritic cells.
Dr. Nesselhut also said he now has a bile duct tumor cell line, which can be used if I can’t get enough of my own tumor tissue. I can’t help but wonder if Geoff is the donor. Whoever donated it, I am infinitely grateful. I don’t have much hope for the dendritic therapy to work on me without loading the cells, given that the tumor has been growing while I’ve been doing the treatment (unloaded).
I’m sorry to hear that Geoff died. He was my inspiration to try this therapy. Dr. Nesselhut’s son, who is a doctor at the clinic, said that cholangiocarcinoma is a hard one to treat.
Sara Campbell
I went to Dr. Nesselhut’s clinic for treatment last month & this month. I have it from a very good source that they no longer have a working relationship with Dr. Gorter. I gathered that part of the problem was that Dr. Gorter was too busy with other stuff and wasn’t giving his patients regular treatment.
At any rate, Dr. Nesselhut’s lab in Duderstadt does all the dendritic cell work for Dr. Peters in Gottingen, as well as Dr. Gorter. Also, Dr. Nesselhut has treated far more patients with dendritic cell therapy than have the other two doctors. If you’re going dendritic, Nesselhut is your man.
From Gottingen train station there is a bus that takes you to Duderstadt in 1 hour. For 60 Euros or so, you can stay at a very nice b&b that gets a lot of Dr. Nesselhut’s patients: Ziehr ! Stuck: http://www.ziehrstueck.de/
Sara C.
I was diagnosed with cc in March 2007, and have had discomfort in my solar plexus, just below where the ribs come together, almost the entire time. I also sometimes experience the feeling that my stomach is not emptying.
I haven’t had any chemo.
I do not think it is nerves, or anxiety.
I am losing weight.
I am not hungry as much as I used to be. (oncologist suggested that was due to depression, but usually I eat in response to depression!)I think it is a symptom associated with something going on with the cancer.
Sara C.
I am getting dendritic cell therapy from Dr. Nesselhut. My oncologist would not help me make this decision, and was otherwise difficult to work with. I need an oncologist who will help me make decisions about reputable treatments, and cooperate when I need tests or therapy that support whatever therapy we have chosen.
I haven’t found any source of information (like a patients’ chat) that helps me. Dr. Daniel Gruenberg in Portland lists “integrative medicine” as one of his clinical interests, which is some indication of an open mind. Haven’t seen that on ANY other oncologist resumes.
That’s all I’ve got so far.
Sara C.
I finished the trial, and as I suspected, they don’t really know if it did anything. The “something” in my liver is unchanged, and my blood tests are all in the normal range. I chatted a little with Dr. Weinberg about the study results to date, and got the impression that maybe the drug is not producing ongoing immunity. And most people develop antibodies to the OX-40 because it was grown in mice, so they can’t get further treatments.
The oncologist said to come back in 3 months for more blood tests and CT scan. I guess that means the OX-40 bought me some time, because in April he said the average person lives 6 months without treatment.
Sara C
Jules,
It sounds like Dr. Nesselhut is doing a great job with your Dad. I’ve been trying to decide which clinic to go to. Dr. Nesselhut sounds like the most remote of the three clinics I know of – the others are Dr. Gorter in Cologne, and Dr. Martin in Gottingen. I would fly into Frankfurt. I’m guessing your Dad heard something good about Dr. Nesselhut, because Duderstadt seems to be off the beaten track.I think I committed something of a gaffe in asking Dr. Chang in New York how he is able to administer the injection – whether it is approved for use in the U.S. He said:
“… We rather not discuss the details or legal logistics
of dendritic treatment as might be performed in the US
and would rather discuss this with our patients who
are seriously interested in person. … “Sara C
I’m in Astoria, Oregon. I “just happened” to end up in the care of doctors who were associated with the research lab at Providence Portland Hospital, who are very into immune system therapies for cancer. Besides the OX-40, they’ve got trials using dendritic cells, but not for cholangio.
Funny you say I sound casual. My oncologist seems to think I’m a pest! I don’t think he values cancer as a life changing event.
Sara Campbell
I would really like to hear some conclusions from anyone who’s done dendritic cell vaccine therapy … knows someone who did it … etc. Is Geoff the only one? I’m just finishing an OX-40 trial (described in separate post), and I’m looking for what to do if the OX-40 didn’t help.
Some questions I have:
Where did you go for treatment?
What was the outcome of the therapy for you?
Did you have chemo before this therapy? What other treatment?
When did you start the dendritic therapy?
How many treatments did you have?
How long do you have to be there for treatment (e.g. 10 days, go home for 2 wks., 10 days, etc.)?
Would you make the same choice, knowing what you know now?
What would you do differently?
Any other observations?
thanks! Sara C
