stacie
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Anne Marie,
I wish there was one particular place that had the best surgeon, oncologist and naturopaths in the nation for cholangiocarcinoma. Unfortunately, while there are many who are good or excellent. I don’t know that there are many who specialize “particularly” in cholangiocarcinoma – there just aren’t enough patients. Many of the larger institutions who say they specialize in cholangio see about 65 cholangio patients a year – compare this to statistics on other forms of cancer they treat (this is a drop in the bucket) – also many of the larger facilities are much more restricted on what they will try – they appear oft times to treat cholangio much less aggressively.
This is why there isn’t a lot of research, this is why we have to rely on the research of other hepatobiliary cancer information to infer what we hope will work with cholangio because there just aren’t enough patients.
You will see as you read through the blogs and in the discussion forums many doctors and surgeons are suggested. I have probably talked with no less than 8 surgeons who are the best in their field – ofcourse they are all in the same field. I think you have to talk with people, you have to ask lots of questions and then you have to make the decision that is the best for your family.
Good Luck! Let us know what you decide.
No, I haven’t communicated with Dr. Forsythe, I like to try to do as much research as I can first. I am in a very heavy research time right now, as Mark is off his chemotherapy. I’m also checking everything against the regimen his naturopath has him on as well.
Stacie
Cindy,
Rick has posted instructions on the general information page if you would like to set up a blog of your own it is very simple. If you need help just email rick@cholangiocarcinoma.org
Stacie
Val McCrea was on Tarceva and still may be, you can also check the profiles to see who has been on this before and who is currently taking it. I think there are several.
Stacie
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.
Wow, Jeff – there are not many people around 7 years after their diagnosis. You must be doing some thing right. Your positive attitutude will be a blessing to many here on the website. Thanks for sharing your information and please continue to do so.
Stacie
Jerry, we are glad you found us. Congratulations on the new wife and the cat (I’m not a cat lover either – haha).
You have several people on the website in your area. Tricia comes to mind first because she is two and a half years out from her initial diagnosis. Hopefully she will see your post and contact you.
Keep your chin up and I must say I agree with the comment above. Go to a naturopathic Dr. and have them work on getting your immune system working among other various things.
Good Luck! Keep us informed and ask any questios you need to.
Stacie
Hi Bill,
Welcome and we love to see people who are years out fighting this disease – it gives us all a lot of hope.
I will have Rick post your site with the other family sites. Thanks for letting us do this. I think it really helps others.
Stacie
The foundation is heavy in paperwork right now. The Board has been selected and they are ready to get started. We have a few more things to prepare before we can get to work or accept donations of any kind.
We want to do the foundation right and make sure that we are lined up with the most knowledgeable and experienced Dr’s and research science that we can find associated with cholangiocarcinoma.
We feel confident that together we can help make good positive steps forward for those of you suffering from cholangiocarcinoma and ease the burden for those of you standing by the side lines wanting to help in some way.
We are hopeful that we can be ready in the next few weeks and then the updates will be frequent. We appreciate so much all the interest in the foundation and the willingness of many to put so much time and effort into making this all happen.
Thanks again
StacieMark has been on both. He was on 5FU for a couple of months, but you are right, it was more difficult to be hooked up for two days. The difference is that Xeloda, which he takes now, is in pill form and is a little harder on the liver (the liver has to process it) and most patients don’t want to stress the liver any more than it already is, however, our oncologist was not concerned about this, he said this was minimal if any. Xeloda does appear to have different side effects than 5FU as well.
Mark has tolerated the Xeloda very well and has had very few down days as compared to his other regimens. If you need more details you can look at the published works on both 5FU and Xeloda on pubmed
Hope this helps.
Stacie
Maryanne,
You might get online or check your local library for information on the Gerson Lifestyle or Diet. If you contact their foundation directly they will send you a bunch of information and give you names of people who had stage 4 pancreatic or peritoneal cancer and were healed using this diet. They did not have anyone with Cholangio at the time I contacted them.
I remember you said you were already eating kind of a vegan diet, so this should not be a difficult step for your husband. It is very strict and I think that scares people away, but there is some solid research out there that supports it. They say on the DVD (that was given to me) that they have seen miraculous results in as little as two weeks time on this diet. If you decide to do something natural please keep us informed – this is a hard decision, but if he is feeling well I think you have a better shot than otherwise.
Stacie
Keep knocking on the door. You have to keep making phone calls until you reach a decision maker and then you’ve got to plead your case. Your Dr. must get involved as well. Make sure he is making the necessary calls and faxing letters or whatever the insurance company needs. Just keep at it. Ask them if they have an advocate program (someone who could be assigned to your case to look things over and take the time to explain things to you and go directly to the insurance company when things like this happen). If you work for a big company, your company may have an insurance advocate that you can work with.
Stacie
