Carrot juice thins bile, which helps it flow. 

Sara Campbell

What a beautiful redesign of the website!  I haven't visited for a few months, and it was a happy surprise to see the changes you've made in the meantime.  Glad this website is still strong and active!

Sara C

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:  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 am looking for an oncologist in the Portland, Oregon area that is open to more than the FDA/AMA recommended treatments.  I want someone I can ask questions, who will make suggestions, and who will give me sufficient explanations that I can make decisions.  Has anyone met this remarkable doctor?

Sara C.

8

(2 replies, posted in Clinical Trials)

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

10

(3 replies, posted in Introductions!)

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

12

(2 replies, posted in Clinical Trials)

I am a week away from the end of an OX-40 Phase I drug trial. 

When I found out I had bile duct cancer (stage IV, unresectable) I just happened to be at a hospital whose research lab developed an OX-40 treatment, and was conducting a trial I qualified for.  The trial is open to people with all sorts for tumors.  It is the only treatment offering the possibility of long term immunity that I am aware of, in the US, for cholangiocarcinoma.  It is my understanding that the other immune system drugs being tried in the US are more like drug therapy than inoculation.  In the OX-40 trial you get 3 infusions in the first week, then tests & observation for the next 2 months.  I had no prior treatment for cancer.

The tests they did after 1 month did not tell us much.  Happily, all of my blood test results started out in the normal range, and have stayed there.  The only thing they can get an image of is something in my liver that may be a cyst.  That showed no change.  If it is a cyst and not a malignancy, I may not know if the treatment had any effect at the end of the trial.  I'll post again when I get the results.

The two big questions are, of course:  Did this treatment reduce the amount of cancer in my body?  and Will my immune system continue to destroy this nasty critter whenever it is encountered?

Here are some websites that have more info on OX-40 and the drug trial.  The location is Providence Cancer Center in Portland Oregon.

News Release on drug trial:  http://www.providence.org/oregon/about_ … ial306.htm

Info on the development of the therapy:  http://www.providence.org/Oregon/Progra … andrew.htm
This page has links to Dr. Weinberg's publications.

contact for drug trials:  Katie Strauss, RN  503-215-2619
http://www.providence.org/Oregon/Progra … trials.htm

Medline has a ton of articles on OX-40 as a component of the immune system.
Wikipedia has a good article.

13

(3 replies, posted in Introductions!)

Hi, I got diagnosed with stage IV unresectable bile duct cancer about 3 months ago.  I had jaundice and that's how it was discovered.  Got a stent, some duct scrapings, laparoscopy, samples of 2 spots on the liver, all the samples were cholangiocarcinoma, so they replaced the plastic stent with a long metal one.

I opted for an immunotherapy drug trial (see post in Clinical Trials:  OX-40 trial).  If that doesn't do the trick, I'm considering dendritic cell therapy.

So far, I'm feeling pretty good.  My blood tests are now coming back normal.  I'm thinking that if I try to avoid treatments that damage the immune system, I'll have a better outcome with immune system-based treatments.