stacie
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Betty,
If you find a way, you might try to contact her. Perhaps the nurses could give your information to her (you could write her a note or something) and then she could contact you.
Anyway, this would be a valuable piece of information for us to have.
Jules,
After Mark had his biopsy analyzed they found elevated levels of HER2. Herceptin affects HER2, one of the oncologists we saw early on suggested they perform FISH analysis, this is supposed to be the best predicter for response to Herceptin and is relatively easy to do.
Our oncologist told us that Herceptin has not shown response in any kinds of cancer other than breast cancer, even when elevated levels of HER2 are found.
I was not aware of the the person that Betty is referring to, Betty can you find out more information about her – some specifics would be really helpful.
Jules,
Here is the study that shows a significant increase in response when using a combination of drugs in chemo. Ofcourse, you weigh this with the side effects, but take a look and see what you think.
http://theoncologist.alphamedpress.org/cgi/content/full/6/6/488
Jules,
Here’s a website that may give you a little more information on the combination.
http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationregimes/Gemcitabinecisplatin
Mark, did one cycle with Gemzar and Cisplatin. He did not have any noticeable side affects, but we changed to Oxaliplatin, because we found a study that gave slightly better statistics using Oxali rather than Cisplatin. The Oxaliplatin on the other hand, has all kinds of interesting side effects.
Our oncologist did tell us from the beginning that the Gemzar, Cisplatin regiment had very few side effects.
UCSF (this is where our oncologist was trained) regularly uses Gemzar and Cisplatin as their preferred treatment for cholangio. You may be able to speak to someone there (one of the nurses preferrably) who could tell you what you might expect.
We consulted with a Dr. Ian Renner in California about PDT, but Mark was not eligible for this kind of treatment because he has “intrahepatic” cholangiocarcinoma. He explained that the photo-dynamic therapy is useful for extra-hepatic only.
Congrats to your mom. Can you give us a little more information about her initial diagnosis? Did she have any metastatic disease? Where were her tumors?
Could you also give more information on the trilogy radiation?
Dr. Venook is another option at UCSF he trained our oncologist and has a lot of experience in Cholangio.
Hans,
Tricia had a very good result from chemo embolization and I believe her tumor was bigger than yours. She is in Utah right now, so hopefully she will post when she gets back on Tuesday!
Stacie
Hans,
Can you give us more information about your treatment? What did UCSF have to say? Did you see Dr. Venook there? What did Stanford have to say? What is “Swedish”?
Exactly what regimen do they have you on? Just Soraphenib?
Stacie
Sara,
Welcome. I don’t think the major cancer centers will ever look at your records without looking at you. At least that has been our experience. They will take all of your records, but they want to do physical exams and other testing as well. We wanted MDAnderson (and Mayo) to do this, but we haven’t had any luck. Once you’ve started treatment somewhere else you have to wait until your cycle is complete, before they will even discuss your case and they still want to see you in person.
Just wanted to let you know, if you are viewing this site – we think we will have everything ready to go on Monday. Rick is putting together a profile so that when new people register they can fill out the information. Unregistered users can browse the site, but will not be able to see profile information, we’ll keep that as private as possible.
Here is what we are putting on the profile. If there is additional information that would be helpful to you, let us know.
Name:
Patient or family member/friend:
Age (of patient):
State or Country:
Exact Diagnosis:
Date of Diagnosis:
Oncologist/Oncology Team:
Where you are being treated:
Current Therapy:Past Therapies:
This will be a section where you can put in the chemo regimens you have tried, CT/PET scan results, anything that you have tried in the past and the results. Dates will be important for others, especially if something is working. I think this will be a great resource for all of us.
Alternative Therapies: Anything you have tried that has been helpful herre as well. Or something that was particularly unhelpful (haha).
Again, if you have suggestions, let us know.
Ranner,
Have you looked at the chemotherapy spread sheet? You might have your Dad take that in to his oncologist and see if he would be willing to try a different combination. Their are lots of oncologist trying lots of different things. Those are all drugs that people with cholangio are wither using, are being used in clinical trials or researchers are looking to use them against cholangio – ofcourse, nothing proven, but nothing seems to work for everyone with this disease.
The other option is to get him into a clinical trial. That spreadsheet is also available (under the blog heading) and that may be his best shot, especially if his oncologist doesn’t feel like there are other options – there are always other options. Good Luck – let us know how it’s going.
Stacie
