April 15, 2016 at 5:15 am #85474iowagirlMember
Marion, The proposed website section gears toward possib le treatment options and clinical research studies is muchly needed and another reason the CC Foundation is the best place for CC patients to look for CC info and treatment. The foundation continues to update and expand and be “more” to our patient and caregiver community. Kudos to all those who are out front or behind the scenes, working to make this website and the foundation better. You never know when one post or one new piece of info might give someone a better quality of life, or even save a life. Thank you all for every thing y ou do….and for just being here for us.
Julie T.April 15, 2016 at 5:08 am #85473marionsModerator
Katrina….thanks for sharing your experience with fantastic outcome and the helpful hints and tips for all.. Which research study are you participating in?
Regarding clinical trials: the foundation members are in the process of building an entire website section geared to this area of possible treatment options. Once completed, patients should have an easy time navigating clinical research studies.
Wishing for continued success
MarionApril 14, 2016 at 9:53 pm #85472lainyParticipant
THANK YOU, Katrina for that priceless and valuable information. Along with all that good news, CONGRAULATIONS on being a Survivor. Far from a small thing is your fantastic attitude. Wishing you continued success and we so love hearing from you! Wishing you the very best!!!April 14, 2016 at 9:45 pm #85471katrinaParticipant
Initially I worked with my very good local oncologist near Dallas and my local surgeon. They have shown in some many ways how they really care about me but they do not do trial research. I had asked if there was someone we could pay to sort them out. He didn’t know. I called the American Cancer Society, who will transfer you to a nurse that does that kind of thing for a living. They study about it and get back to you in a week with answers. At MD Anderson, when my surgeon there took my reoccurrence to the “Tumor Board,” the onoclogist there was involved with a Trial that seemed helpful to cholangio patients with an FGFR gene alteration. I had heard from a nurse/frient at UT Southwest in Dallas that Foundation One did all of theirs. They are in Boston and very good. So they sent off a piece of a former tumor (that the hospitals keep) to hae it tested. After a few weeks, they send it back with what all your gene alterations are (that they currently can test for) and what FDA approved treatments there are (none) and what Trials are for Cholangiocarcinoma with one of my mutations. So, I’m in a Trial at MDA for it for 8 months. The first 4 months had significant reduction in tumor size. And the last 4 months have had little reduction or stable. But hey, who isn’t good with stable as long as it isn’t in an organ that they can’t mess with. Another way we searched was asking our doctor what all the terms were we could search the clinical trails page for. He came up with a lot more search words that I had thought. So that is good to know too. Then of course, on this website, they are listing new trials out there. I recommend a Genetic Test if they have any malignant tumor sample from you. (Also, second opinions from surgeons and oncologists who work frequently with this kind of cancer can help much more too. That’s why 2nd opinions at the best cancer facility you can get to is a very good idea. I have lived on 6 years, starting with a successful surgery and having a reoccurrence here and there is a gland. Off and on chemo now trial and surgery 3 times has kept me with a great quality of life. More than great.February 7, 2015 at 6:36 pm #85470marionsModerator
Duke….there is a general disconnect between local oncologist and clinical trials network in that often times patients must search out their own trials. Ideally we would want the local physician provide the resource however; many community physicians are not aware of clinical trials or they don’t want their patients to participate in a clinical trial study. It is an imperfect system to say the least. This is in contrast to the UK in where the Government sets ups these centers and the majority of people easily become research participants.
That is why we have initiated a new system in that we ask PI’s (Principal Investigators) to bring their upcoming, approved research study patient friendly version to our site. Example:
MarionFebruary 7, 2015 at 6:19 pm #85469lainyParticipant
Good Move, MSargent, for your Dad. Excellent Care Giving! When we met with the ONC the first time for my husband’s CC we didn’t have to ask about trials. He told US that he had no problem with looking at trials. That is how it SHOULD be. Good luck next month with your MDA appointment!February 7, 2015 at 5:35 pm #85468msargent1Participant
My dad isn’t in a trail yet, but his oncologist at MD Anderson will discuss one with us on our next visit in March. MD Anderson seems very open to trails, and appears to guide patients in that direction after standard therapy.. Our experience in Atlanta, at Piedmont Hospital, was very different … they didn’t seem at all interested in trials, and his oncologist in ATL was dismissive when I brought the subject up. That’s why I got my dad into MD Anderson … what a big difference and I’m so happy we didn’t waste a lot of time at Piedmont.February 6, 2015 at 10:17 pm #85467mattreidyParticipant
:: bump ::
Not a single response? I’m interested too as I expect to be going this route…November 15, 2014 at 7:05 am #10744dukenukemMember
How much help have you gotten from your oncologist in getting admitted to a clinical trial? Or have you had to do it all yourself?
Any experiences with the Ohio State University James Center?
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