marions

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

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

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

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

Cooper,
Writing your story about your Mom left an everlasting imprint in my heart. Thank you for allowing us to share your sorrow. What a wonderful woman your mom must have been for having raised such a wonderful son. I am hoping so much for you that as time passes your pain will be diminished by the wonderful moments of her memory.
Thinking of you and your mom
MarionS

Hi Irene,
also find doctors who specialize in “bile duct surgery” in many instances they are also liver transplant surgeons. You need many more than one or two opinions and read this web site since each day we learn something new. We are all connected in a very special way.
The best of luck
Marion

Hi Susan
we had a similar experience in re: to life expectancy and so have others on this site. First we cried – then we fought. I believe that Dr. Jenkins should be one of the surgeons you should contact since he has performed 200 operations of this type.
As far as I know he does give second opinions however, many surgeons simply don’t have the time for this. Approaching medical institutions as “new patient” gave us better results in re: to a consultation with a specialist. We had gathered five surgical opinions – only two agreed on total resection –

Hopefully this will help.

MarionS

Cass,
I very much agree with Stacie. We have talked to several people who have been treating CC with different chemo combinations, some of them as long as 17 years. Don’t give up hope.
MarionS