hmschaef wrote:Hi DK -
This is my first post; I always read but have never posted before. Reading through your posts is so inspiring, and I had to reach out. My dad, Paul, has fought Stage IV colon cancer since August 2014. Microsattelite stable, KRAS mutated, PIK3CA mutation as well. He had surgery right after diangosis to remove the tumor in his colon, a free floating brick size tumor in his abdomen, and also had a splenectomy. He has liver mets and PC. He's progressed through Folfox (no response whatsoever), Folfuri with Avastin (had to stop Avastin due to blood clot - we got several months of stability out of Folfuri), and unforunately after one round of TAS-102, a few areas in the liver and one area of PC has grown slightly, so we have been encouraged to seek out clincial trial options. Throughout his journey, my dad's immune system has been shockingly strong. His lab levels are always "perfect" as his nurses marvel, and he still works full-time, at work at 6 a.m. every morning. Aside from some fatigue and diaherrea, he feels great. It's hard to reconcile how things can be advancing inside of him when he feels so well and looks so great - he was a smoker, drank, and ate horribly before his diagnosis. Once he got sick, he quit smoking, quit drinking, and is now eating almost completely vegan, with the exception of wild-caught salmon once a week. His body has responded fantastically, and he looks and feels healtheir than ever. He's my best friend, and the thought of him not being here to walk me down the aisle one day or see his future grandkids is devestating. We are seeking out the most aggressive clinical trials possible, and I strongly believe immunology is the answer and where the cure from cancer will come from. My dad's immune system is so strong, and I feel like if we can empower it to fight, it will. I want to give him his absolute best shot, and I think immunology is his big swing. I have found trial NCT001174121 - in reading through your journey, it sounds like this may have been a trial you pursued at one point? I know the splenectomy would hypothetically make my dad exempt from some immunology trials, but a splenectomy is not listed as an exclusion for this particular trial. His onolocigst feels he qualifies; I have reached out to the trial coordinators but am waiting to hear back. Can you offer any insights? I have also looked at NCT01697527, but it looks very aggressive, and I'm not sure his cancer expresses that protein. MGD007 sounds promising, though Phase One gives me pause. Your most recent post about the trial that may be coming down the pipe on your end sounds amazing as well. Do you have any insights you can share? Honestly, as I'm researching the options, I feel so overwhelmed. Reading your blog and your posts has been a little becaon of light today as I've spend all day looking at trials. I really appreciate any advice you could offer from your own experiences, what trials you think are very promising, and really any insights you can offer. YOU ROCK! Sending thoughts and prayers - and wanted to share my favorite quote to you and other warriors reading this. "Fate whispers to the warrior - 'You cannot withstand the storm'. The warrior whispers back 'I AM the storm.'"
THANK YOU! Looking forward to your thoughts.
hmschaef wrote:So hoping that prior splenectomy is not an exclusion criteria for this trial. It is not listed and the list of detailed exclusions is LONG! Fingers crossed. Thank you again for your response. Best of luck!
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