New Cholangiocarcinoma Research

We want to post a piece of information/research that we have come across. We are hopeful that it will help our brother and also that it might be helpful to those of you suffering from cholangiocarcinoma. We have been in communication with a company called T-Gen "Translational Genomics", they have another arm called the Molecular Profiling Institute (MPI). The website is www.molecularprofiling.com and you can read up a little more if you would like. I will give you a brief synopsis here.

Mark, our brother, had a biopsy at UCLA six weeks ago and that perserved tissue has been sent to MPI. They will extract the RNA from the tissue and will do a DNA microarray which will be analyzed. They compare normal genes with the diseased genes and look to see which proteins the diseased genes are over or underexpressing and from this they can target which kind of chemotherapy or clinical trial medication will be most helpful in this fight, against this particular cancer, in this particular person.

This is called "Target Now" and is personalized medicine, which they say is the future of medicine. They have never worked with Cholangiocarcinoma before, but have had fabulous results with pancreatic, breast and other forms of cancer. They have had good success working with insurance companies as well. But, because we are the first, we will let you know.

Because they have not worked with cholangiocarcinoma before, and because this disease is so rare, it would be helpful for them to have other samples as well. If you have any interest in participating in this process, please feel free to contact Dr. Arlet Alarcon --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html ---, or Johanna Gardiner (--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html ---) for more information.

Please feel free to contact me if you have any questions.

**We just received good news this weekend back from T-Gen. They found 5 different chemo drugs that will attack our brothers cholangio. The doctors were very excited. We will now begin this new process.

Good luck to all. We would love to hear from you.

Kelley

Hi Kelley

This news sounds very exciting. Do you know the names of the 5 chemos products your brother might be trying. Compass is deleting email adresses so you might consider writing it in a way so it does not resemble a mail adress

Greeting from Randi in Denmark, Europe

Hi Kelley-
What great news for your brother! You have emailed me with the contact information but can you tell me how you started the process with your brother's oncologist? How did you get everyone "on-board"? Were the 5 chemo drugs any of the common ones that the doctors are using? Keep us posted with his progress. Thanks

Hi Ranner,
Thanks for replying. I have seen you post on another website. I'm not sure which one. I posted the info about t-gen on another website also. Have you been on the choose hope site? As we are finding out more information about the research we have found, we realize that we were misinformed on a few things. As we have talked to doctors involved with t-gen they are now telling us that we should never of even ended up there, until we had exhausted all other possibilities. What they do is extremely experimental. They are telling us to continue on with what our oncologist is suggesting and then when we have done everything else and nothing has worked we should contact them.

That news was a bit frustrating for us. I guess it still gives us hope for later. My brother was just diagnosed in Oct. 2005. He is just finishing up his first round of chemo.

What is your situation? We are in contact with several families all with family members with cholangiocarcinoma. If we all stay in contact we may be able to help each other.

I hope all is well with you.
kelley

Hi Kelley,

Thanks for the information on the research. I am a caregiver for my husband (52) who was diagnosed with distal bile duct cancer June 2005. He had the whipple surgery and 5 weeks on continuous 5FU and radiation and now he's just about done 4 months of Gemzar. It has been a really long road but he's doing well, is just exhausted all the time and he has "chemo brain" our oncologist called it - grasping for words or thoughts difficulty concentrating. The good news is that it should improve but never get back to 100%.

Guess I just want to put myself out here and become one of the other folks you know whose life has been affected by this rare cancer. It's good not to feel alone just haven't had time to try and connect.

Happy New Year!

Darcy

Hello Kelley and others.

My situation is this. My father was diagnosed with cholangiocarcinoma and spread to the liver ind february 2005. He was offered chemo but not as a cure. He went on the chemo regime with oxaliplatin and gemzar and xeloda. His tumor regressed sligthly but has now progressed and they have stopped offering chemo. So now I am desperate for starting a new battle against the tumor. But here in Denmark if one thing doesn't work you are not likely to get the chance to try another thing. We have just heard from the second opinion that they have not found other things to try. Here it is the national health board that gives you the second opinion. It is not like in states where I believe you can pay for at second opinion yourself and get as many as you can afford.

I can understand that you find comfort in having the t-gen option for later.

Do you know the name of the chemo your brother is having now?

I would like to keep in contact since you are more likely to obtain the latest news regarding this cancer. Here in the country there is not much research for this rare type of cancer.

Since I have read your reply I have visited the choose hope site and I am not finished with it yet. thanks.

I wish you and your family and all other members of this group a happy new year with luck for all of us.

Randi

Hi Ranner,
I'm so sorry to hear about your father's situation. It is so hard to watch our loved ones suffering. I also saw that you posted on the website that our family has been working on just for cholangiocarcinoma. (www.cholangiocarcinoma.org) How did you find it? We hadn't really given out the address yet because we were still working on it. We have hooked up with some great people who are doing a lot of research. Keep an eye on the site and we can keep updated on the latest info.

My brother Mark's chemo regiment is Gemzar, Oxaliplatin and Avastin. We will try to add Tarceva soon as that seems to be the newest drug that is working. He will have a CT scan in a couple of weeks and then we will know how it's going. Let us know how we can help you. You are in our thoughts and prayers.

Kelley

Hi Ranner,
I'm so sorry to hear about your father's situation. It is so hard to watch our loved ones suffering. I also saw that you posted on the website that our family has been working on just for cholangiocarcinoma. (www.cholangiocarcinoma.org) How did you find it? We hadn't really given out the address yet because we were still working on it. We have hooked up with some great people who are doing a lot of research. Keep an eye on the site and we can keep updated on the latest info.

My brother Mark's chemo regiment is Gemzar, Oxaliplatin and Avastin. We will try to add Tarceva soon as that seems to be the newest drug that is working. He will have a CT scan in a couple of weeks and then we will know how it's going. Let us know how we can help you. You are in our thoughts and prayers.

Kelley

Hi Darcy,
I'm so sorry to hear about your husband, but I am glad to know that there are people out there who are having some good results. Our family has put together a website just about cholangiocarcinoma. If you get a chance, check it out. It is in the beginning stages but we feel it would be nice to have a place just dedicated to cholangio. The web address is www.cholangiocarcinoma.org. If there is anyone else that you are communicating with who has cholangiocarcinoma, please let them know also. We can all help each other.

Have a great day. Kelley