1 (edited by stacie Thu, 19 Oct 2006 15:22:00)

Topic: Dendritic cell vaccine therapy

It is time to post some research that has been going on in this area.  I don't like to post everything I'm researching until I feel confident that the information is correct and supported by studies and peer-reviewed articles, but on the other hand, we are all looking for something that works.  Hopefully many of us are looking into and being sent a lot of information from various sources that we are researching.

I'm going to have Rick add a section on the discussion board called "Research" where you can add things that you are researching and others can add to your research and information if they are also researching the same items or issues.  This way we can coordinate efforts more easily and we aren't replicating difficult contacts over and over. 

With that being said, I have had email contact with Dr. Gorter but Marion Schwartz has spoken to him on the phone 2 or 3 times.  I'm hoping Marion will be comfortable posting portions of her conversation with Dr. Gorter so that everyone can benefit from the information.

We have had outside confirmation of dendritic cell vaccine therapy as well.  I will post this as well.  There will be more information coming as we also have a contact who just had this therapy and hopefully will be able to provide us with more information.

http://www.cholangiocarcinoma.org/2211.pdf

This is where you can get the article.  On the bottom of the article are three links, one is the address for Dr. Gorters clinic in Cologne, Germany, the other is an email address for him (which he will very quickly respond to) the final is a presentation on Dendritic cells that he presented at the 2004 ASCO conferences (peer-reviewed article) .  Please take a minute to read "everything" first so that we aren't pummelling him with the same questions.  Also, please read Marion's transcript and the transcript I will post from a research oncologist who looked over the information for me and gave very insightful comments.

We don't know if anyone who has cholangio on this website has used this treatment but we would be very interested to know more.

We will keep you updated as more information comes to us but until then, if you have any information be sure to post it.

Much Thanks!
Stacie

Re: Dendritic cell vaccine therapy

I sent the articles from the above post to this cellular and molecular pathologist, who specializes in cholangiocarcinoma.  Below is his response to my questions.


I am not personally aware of Dr. Gorter's research. However, dendritic cells, which are a type of  antigen-presenting white blood cell, are being used to develop cellular vaccines against different types of cancer, such as melanoma, lymphoma, breast, and colon cancers. Much of the work done has been in experimental animal models, although there are some clinical trials that are now ongoing. The idea is to use isolated dendritic cells that are loaded with tumor antigen to induce an anti-tumor immune response based on a stimulated T lymphocyte-mediated tumor cell killing response.

Dendritic cells have been detected in human cholangiocarcinomas, particularly at the invasive margin, and may represent an innate body mechanism to mount an immune response against the cholangiocarcinoma cells. However, this innate response is not sufficient to stop the tumor.  The possibility of using isolated dendritic cells that have acquired antigens from cholangiocarcinoma cells to produce a vaccine that could be used in the immunotherapy for this cancer is theoretically feasible, althougth at this time, studies based on dendritic cell-based vaccines are experimental, with only limited human pilot data. Using tumor derived antigens for developing such vaccines can be very problematic, and will be limited by the availability of tumor tissue, heterogeneity in tumor antigen expression, and on the preparation techniques. Since mRNA can be amplified, one approach that is being taken to amplify tumor mRNA as the source of the tumor antigens, which then is used to construct dendritic cells that are loaded with tumor mRNA encoding for tumor antigens, This may be a much better strategy for generating dendritic cell -based vaccines against cancers, but again, the research is not fully developed to predict clinical outcomes in patients with advanced cholangiocarcinoma or other types of aggressive solid cancers. Chemotherapy and radiation therapy compromise the body's natural immune response, and need also to be taken into account when considereing strategies involving immunotherapy.

I hope this information is helpful to you.

Re: Dendritic cell vaccine therapy

I am in the process of posting the information gathered.  It should take no longer than a day or two until this task is completed. 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4 (edited by Geoff Thu, 19 Oct 2006 02:13:57)

Re: Dendritic cell vaccine therapy

Hi

I'm slightly confused about what Dr Gorter (based I believe at a clinic in Cologne (Germany) is doing compared with what the "Institute of Tumour Therapy" at Duderstadt (near Goettingen in Germany) is doing in the area of Dendritic Cell research and therapy.

The website:

http://www.dendritic.info/DCTreatmentCenters.html

states:  "Europe - The Institute of Tumor Therapy in Duderstadt under the direction of Dr. Thomas Nesselhut in collaboration with Professor JH Peters of the U. of Gottingen in Germany have pioneered the clinical use of DC Therapy in cancer and has treated over 1000 patients to date"

I noticed That Dr Gorter was a co-author of the ASCO 2004 paper "Cancer therapy with unloaded monocyte-derived dendritic cells in patients with inoperable pancreatic and gall bladder cancer", the lead author was Dr Nesselhut (Duderstadt).   Suggests that Dr Gorter collaborates with the clinic at Duderstadt ?

The reason I'm raising this question is that I live in UK and a trip to Germany (for an initial consultation) would not be a big deal but I'm wondering which might be the best place to go, Cologne or Duderstadt.

By the way the ASCO 2004 paper describes DC treatment of 23 patients (17 with pancreatic, 6 with gallbladder) and quotes the following outcomes:

- clinical response in 5 pancreatic patients incl 2 stable disease, 2 minor remissions and 1 mixed response, with overall survival 4-32 months  (I'm not sure that I understand this - does it mean that all 5 patients died within 32 months ?)

- clinical response in 1 gallbladder patient (stable disease after 18 months)

It would be interesting to find out what experience they have had since 2004.  Perhaps this is a question which Marion could raise with Dr Gorter ?

Geoff

Re: Dendritic cell vaccine therapy

Geoff,
I will try to find the answer to this
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

6 (edited by marions Mon, 08 Jan 2007 22:37:57)

Re: Dendritic cell vaccine therapy

I have not been successful in re-connecting with Dr. Gorter since yesterday although I recall him mentioning a four to six week response time in order to review and correct my transcript.  I will continue to stay in touch with him expecting to hear from him soon.
Unfortunately, I am left with many unanswered questions in re: to the effectiveness and eventual positive outcome of dentritic cell therapy.  Hopefully, someone has experienced the treatment personally, and is able to pass on information first hand.
I do understand that some components of the immune system, which are to defend themselves against cancer cells (which always appear in our body) for yet still unknown reasons turn against us.  The approach of collecting the patient's own blood, isolating certain cells, and then manipulating these cells before reintroducing them back to the patient with the hope that the body itself will produce an immune response similar to an immunization protocol seems promising to me. As far as I understand patients who have undergone this particular treatment seem to have tolerated it well however, I am still not clear as to the overall success rate of the procedure.  Hopefully, collectively we are able to come up with more answers. 
Chemo therapy does not exclude the application of dendritic cell therapy as per Dr. Gorter however, 3 to 4 day interlopes between treatments have to be adhered to.  When I asked Dr. Gorter whether his therapy has proven itself to be more beneficial then other therapies he responded by saying that there has never been a comparison study done.  Most of the time people come to his clinic after they had chemotherapy but nothing seems to work for them anymore.  He feels to have had very good results though it was not clear to me  as to what this opinion was based on.  I am hoping to be able to shed some light on this through further communication with Dr. Gorter.  One more interesting comment:  Through gene extraction of the cells he can determine for which kinds of chemotherapy agents the patient might be sensitive, hardly sensitive, and not sensitive therefore it is quite possible that the patient has cancer cells for chemotherapy agents which may or may not be approved for their application but may still be of benefit to him. 
The treatment consist of a visit to his clinic.  Blood will be collected and reintroduced seven days later.  The cost is 2800 Euros per treatment (about $3300). This has to be repeated six times.  Progress will be identified through scans, tumor markers and the overall clinical well being of the patient.
Personal telephone conversations with specific questions can be answered by him after consulting with his secretary.  Dr. Gorter and his team will be moving into the University within two months where contact with him and his team can be handled more efficiently. Hopefully, I will be able to add more to this post in the near future.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

7 (edited by marions Mon, 22 Jan 2007 19:06:06)

Re: Dendritic cell vaccine therapy

Geoff,
I have asked Dr. Gorter to respond to the questions you had posted.  Don't quite know when he will reply to this but as soon as he does I will  be sure to pass it on. 
 
I believe that all of us are looking for the same answers:  How many patients have you treated?  How did each patient fare in the long run?   
I would be interested in knowing whether Duderstadt is able to give clearer answers to the questions in order for us to have a comparison.  As far as I know there are several different institutions practicing dendritic cell therapy, ideally we would have several comparisons with re: to their treatment success.  So far I have only singled out Dr. Gorter but I am interested in gathering more information from other places.
You had mentioned side effects from this therapy.  The only side effect I am aware of are flu-like symptoms a few hours after treatment, and ironically the stronger the symptoms the better the body is responding to the therapy according to Dr. Gorter.  So many unanswered questions....
Stay well
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

8 (edited by Geoff Sat, 21 Oct 2006 11:59:47)

Re: Dendritic cell vaccine therapy

I was wondering whether we could get another slant on DC therapy by looking at clinical trials.

I noticed that there was a Ph1 clinical trial of DC therapy at Duke Uniiversity in N Carolina, it covered various cancers including gastrointestinal.  Seems like the trial completed in June 2006.  Although a Ph 1 trial, the objectives included a preliminary assessment of clinical response.  Is it possible in the US to gain access to initial results ?  Here's the trial:

http://clinicaltrials.gov/ct/show/NCT00027534

I'm not aware of any other DC trials in the US but maybe I didn't search properly.  I am aware of a couple of planned Ph1 DC trials here in the UK but these are some months away.  I'm not eligible for any UK trials due to my low platelets.  Hence my interest in what's going on in Germany.

Geoff

9 (edited by marions Sat, 21 Oct 2006 18:35:15)

Re: Dendritic cell vaccine therapy

Geoff,
As far as I know the patient coordinator  of any clinical trial can be contacted though one  may have to exercise some patience awaiting their response. 
I will also try to find out more, and pass on what I have learned.
Please, stay well
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

10 (edited by Geoff Sun, 22 Oct 2006 06:39:43)

Re: Dendritic cell vaccine therapy

My daughter Jules is trying to get some data from the Duderstadt clinic about numbers of patients treated, response rates, etc.  In the meantime, I felt it's worth posting a couple of paragrahs referring to DC therapy from their website

http://immuntherapie.net/cms/98/?i=1.0. … e051289.de

"in Germany, Switzerland and the USA it has already shown some success in clinical trials. However, this form of tumor treatment is still in various phases of research which are supposed to test if this method really helps to achieve a regression of tumors"

and

"At best the immune system of the patient will fight the tumor. Published studies to date present only singular cases of successful immunotherapy treatments"

I'm still very enthusiastic to explore the DC vaccine approach but it's not (yet) the silver bullet we all seek - but I feel that this must be the future for cancer treatment.  In the meantime I agree fully with Marion when she says that DC treatment may build the immune system to help it resist cancer growth.  And in any case, unlike chemotherapy,  the side effects appear minimal.

Geoff

Re: Dendritic cell vaccine therapy

My daughter Jules managed to find a blog of someone who has been having treatment under Dr Gorter at Cologne.  She suffers from a brain tumour however her general experience of why she went to Cologne and what therapy she's had and how she is feeling makes interesting reading.  There are some good attachemnts covering monthly "Blogs from Germany" and - especially good - some "Questions and Answers"

In case you are interested here's the link:

http://www.healingfocus.org/germany.html

Geoff

Re: Dendritic cell vaccine therapy

Geoff,
this is a great link.  Thank you so much.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dendritic cell vaccine therapy

Geoff,
found the answer to your question in re: to Dr. Gorter and Gottingen.  They are cohorts.   Gottingen includes thermatherapy now also with their treatments.  I believe that Dr. Gorter is somewhat less expensive than other institutions. 
Stay well
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dendritic cell vaccine therapy

Well, I have now embarked upon a course of DC therapy at Dr Nesselhut's clinic in Duderstadt (near to Goettingen) Germany:

http://immuntherapie.org/cms/98/?i=1.10 … I0TGdWj.de

I will keep you informed of any results.  In the meantime my secondary tumours are stable (despite having terminated chemo 4 months ago) and I put that down to my radical change in diet which I implement when my chemo stopped.

Geoff

Re: Dendritic cell vaccine therapy

Geoff,
it is wonderful to hear about your tumors being stable.  I am so excited that you have taken the initiative with dendritic cell therapy since I believe it to be an invaluable tool in the fight against cancer.  The best of luck.   Looking forward to hearing from you.
MarionS

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

16 (edited by Geoff Sat, 16 Dec 2006 09:33:45)

Re: Dendritic cell vaccine therapy

Marion
Thanks for your very kind words.  I'll certainly report on this site about my experience with DC therapy when I have something useful to say, at the moment it's very early days.  How is your husband getting on ? - it must be over a year since his resection isn't it (about the same time as mine in October 2005) ?
Geoff

17 (edited by marions Sat, 16 Dec 2006 20:04:01)

Re: Dendritic cell vaccine therapy

Geoff,

Glad to hear from you, and hearing that you are doing so very well.  Unfortunately, my husband's recurrence is not giving him the opportunity to undergo dendtritic cell therapy at this time, but it is our goal to do so in the earliest possible future.  He had a Klatskin tumor resection in June of 2006.

Wonderful to hear from you and the choice you have made.

Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dendritic cell vaccine therapy

Some additional links for Dendritic Cell information.
I got to them by drilling down from a link Geoff posted earlier so many of you may have already seen this.

The Meridian group in NYC appears to possibly do some interesting work.  I have some TCM and other sources I use in NY checking them out and I will post any pro or con feedback that I get.
http://www.meridianmedical.org/programs.html

Be sure to go to the second page on this link:
http://www.dendritic.info/

-Peter

19 (edited by jules Mon, 18 Dec 2006 17:35:35)

Re: Dendritic cell vaccine therapy

peter,

At the hotel in Germany we met some other patients from the US who were telling us that they had recieved some initial treatment in Germany and then had been able to recieve the remainder of thier treatment in New York, I believe that Dr Nesslehut visits New York regulary and works closely with a colleague there - I think his name is Dr Chang. 

We have been told that it will take about 4 treatments with DC cells before we will see whether my Dad's cancer has responded to the vaccines, so we cannot attribute the stability of his disease to the vaccine.  As my Dad has said on this board, this treatment is at the research stage. 

Jules

Re: Dendritic cell vaccine therapy

Jules,  I find this news encouraging.
I'm surmising that the Dr Chang you refer to is likely the same Dr Chang who runs Meridian Medical which is the link I posted in this chain on Dec 18.
Best wishes for your Dad's success with this therapy. 
-Peter

Re: Dendritic cell vaccine therapy

Just to let you know that I had my latest scan results this week and my secondary tumours are still stable.  Shrinkage would have been great but stable is fine.

My UK oncologist doesn't know why they are stable, he says that occasionally he does see this but (he cautions) eventually growth would be expected to re-start.  He's seen unexplained stability lasting for years.

He accepts that my immunotherapy treatment in Germany may be responsible but says (quite rightly) that it's not proven.  He does not attach much credibility to my diet and supplement regime (which I commenced last August after my chemotherapy was terminated).

I shall be discussing the scan results with Dr Nesselhut in Duderstadt next week.   I imagine that I will continue with the immunotherapy.  Something is responsible for holding my tumours stable and it may well be the immunotherapy.  The only way I could be sure would be to stop the immunotherapy and see what happens but I don't have the courage to conduct such an experiment on myself.

In the meantime everyone who sees me nowadays says how well I'm looking - I've completely lost that pale cancer look.  And it's really great not having to face the side effects of chemotherapy.

Geoff

Re: Dendritic cell vaccine therapy

Hi Geoff
  I am so pleased to see that you are doing well on this treatment. I always look out for your posts.
Alison  Jon's wife

Re: Dendritic cell vaccine therapy

Geoff,

I could not be more pleased than to hear that things are holding stable.  I will be very interested to hear what Dr. Nesselhut has to say. 

Stacie

Re: Dendritic cell vaccine therapy

Geoff,
Great news.   Good diet and a strengthened immune system seem like a solid basis for healing.
Have you been able to maintain a healthy weight on your diet?
I've lost over 50 lbs in the last year and have had to modifiy my diet (I was in the ball park of a microbiotic diet with lots of greens etc)  to try to get my body to absorb more protein to sustain enough energy.

-Peter

Re: Dendritic cell vaccine therapy

Alison, Stacie and Peter,

Many thanks for your good wishes.  Certainly my immune sytem does seem very strong at the moment, I didn't even catch the influenza which has been hitting a lot of people here in UK, even after my wife had it.

Peter, you raise a very good point regarding weight.  I went from my usual 82kg (before I was diagnosed with cancer) down to 67kg (after surgery) then I was putting weight back on and went to 74kg before switching diet.  Now I'm around 70kg ie about 12kg (equals 26lbs) below my pre-cancer weight.  Although I eat quite well I just cannot seem to put weight back on - let's face it this type of diet is ideal for slimmers !  I do eat lots of fish for protein (and for Omega-3) but I'm still very skinny.  Thinking of taking some nutritional advice about this but I wouldn't want to compromise the anti-cancer benefits of my regime.  In what way did you modify your diet ?

By the way I'm not on a macrobiotic diet as such.  I've developed a diet which I find appetising.  I eat no meat, no dairy products, no sugar, and no added salt.  I eat brown rice, wholegrain pasta, wholemeal bread, vegetables, oily fish and fruit for desert and snacks (of course the fruit has sugar but I can't do anything about that).  I do enjoy meso soup with seaweed and shitake mushrooms etc.  All strictly organic.  The diet is socially very restrictive - we can't eat in restaurants and when I'm in Duderstadt we have to buy organic produce from the local health shop and give this to the hotel kitchen to cook for me (they've got used to this quirky english guy !).

Geoff