katrina

My goodness, this BGJ398 is still working for me after 12 months of taking it.. I lost a good percentage of tumor with it, then it more or less stabilized it. But my last CT/PET could not see any sign of a tumor in a lymph node in my gastric area. Amazing. They are going to re-reviewi the radiologists notes on the small lymph node near my left clavicle. I’ll report on that later. But this progress even after I needed to take an extra week off for 3 months due to some side effects that had built up. I’ll update you after it goes to the Tumor Board! Course, this will make the scientists scratch their head.

I should restate that my other doctors have asked me to try not to go into a Phase I trial. Also, that there are usually many Phase II and up trials in San Antonio. I also thought I understood that Keytruda wasn’t limited to someone with a certain gene alteration at this time. That’s why they are doing these trials all over the world to see if a certain gene mutation that it works with does show up or not.

Hi Patti,
I do not understand the “ousted” from the Match Trial. Was that an MDA verbal report? Shouldn’t have you received a report saying what all gene testing they compared it to? Or at least how many genes? I think that is a government match and if so, I heard on radio that one may or may not get the resport for a long time.

Mine was done through Foundation One (in Boston). I got a nice long report, they named the mutations found (4 of them in my case), how many they tested against and what they were, any meds that are approved for use with those mutations, any trials that include people with one of your mutations. I remember reading that you can receive updates on it as time goes by.

Then they named over a dozen more genes that they are not sure on. Was it not strong enough or ?, I don’t know. My Medicare even paid for this private genetic trial. My MDA surgeon, Dr. Jeffrey E. Lee, requested it. I had heard from a rep at UT Southwest in Dallas that they used them all the time and they were recommended.

I disliked my side effects so much that I sought specialists in that area to fix or help it. Podiatrists, dermatologist, nutritionist, psychiatrist for chemo brain meds (like Prozac), etc. Feel free to message me in case I have found help or fix. But no insurance and financial security would suck, as does loss of making some progress. I’d call American cancer society to ask questions too for side effects, financial aid, insurance, disability $, anything and everything. They can have a highly experienced and empathetic oncology nurse check into it and call you back.

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.