Postby gep » Thu Jan 17, 2013 6:52 pm
I'm really in favor of a clinical trials thread, too. Just got back from Sarah Cannon (aka Minnie Pearl) in Nashville where my husband started a trial yesterday. It's a MEK and AKT inhibitor study with two Genentech drugs and it's for solid tumors, not just colon. He's maybe the second or third colon person they've had on it. The guy in the next room getting it has esophageal cancer. Sarah Cannon is doing a lot of tumor testing for him on his most recent tissue which is from his liver and lymph node resection in January 2010. Northwestern keeps tissue for 5 years or so and he just also got the slides from his original surgery in August 2007. They told us then that they'd keep it for at least 5 years. Some places want a new biopsy, though, with the newest cancer in case things have mutated from the original assuming you've had new metastases from the original surgery. That's what we were told and Sarah Cannon has said that they may want to do a new biopsy on him. Some of this depends on where the metastasis is, too, I think. The only testing that Northwestern did on his original tissue was KRAS. It's my understanding that there are two ways to get all this molecular and other testing - you either pay for it at a place like Foundation Medicine in Cambridge or you find a clinical trials place that does it for free to establish eligibility for clinical trials. Northwestern has said that they're considering doing BRAF testing on everyone, too, like KRAS, but I don't think they're doing that yet.
They told us at Sarah Cannon that right now they can't do the PD1 testing because the drug company hasn't opened it for colon right now but that they think there will be an amendment shortly that will allow them to do it. They also told us that researchers don't currently believe that the PD1 changes so it's okay to use tissue from an original surgery.
I hope all this makes sense.
Gloria
PS - One of the main reasons I'm so in favor of this kind of thread is that some oncologists are better at taking care of patients at this stage in the game than others and some of the trials don't always appear on the clinical trials.gov website so quickly. Those listed on the website don't always list all the locations the trial is at or list them other than a city. One thing I recently learned is that the clinical trials.gov listing will usually have the drug company name and email. I actually emailed genentech to ask them where a trial was and they answered with the actual locations and contact names. Who knew they'd even answer??
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.