3 trips to MD Anderson, and still not on clinical trial
I've traveled to MD Anderson in Houston, Texas from North Dakota 3 times since December 2017 trying to get on an immunotherapy trial that would hopefully lead to remission or possibly cure my stage 4 colon cancer. I have KRAS mutant, and MSS (stable). In April 2018 I was placed on the waitlist for a trial using MEK inhibitor and Opdivo that was supposed to begin in May 2018. Apparently there's been problems getting the trial up and running.
I was diagnosed in February 2016, and on Folfox for 8 rounds then went on maintainence chemo of Xeloda and Avastin until August 2017. I had microwave ablation in the left lobe of my liver in January 2017 and had Y90 theraspheres in the right lobe of my liver in April 2017.
I've been off chemo since August 2017 after a gallbladder attack put me in the hospital for several days on IV antibiotics and have since had a number of surgical procedures:
September 2017 I had an external tube placed in my gallbladder for 10 weeks. Also had a previously scheduled cryoablation for a lung tumor, then collapsed lung and hospitalized with tube in lung for 3 days.
October I had an abcess tooth so needed to have a root canal and filling, also had antibiotics for 2 weeks.
In November, a failed surgery attempting to remove my gallbladder.
As a result I've only had one round of chemo since last fall, in January 2018 which caused me to be hospitalized due to inflamed gallbladder and suspected colitis. I was in the hospital for 5 days on IV antibiotics which combined with the other meds caused bloody stools to develop.
March 2018 I was referred to Mayo Clinic in Rochester, where I had 2 procedures to place stents in my cystic duct so it could drain and stents placed in bile duct, then a colonoscopy to see why I was bleeding. Found a colon tumor was causing blockage and bleeding.
In April, I had robotic surgery at Mayo to remove the colon tumor; also had a cyst in my liver drained and luckily was able to avoid an external tube.
My latest CT scan done June 5, 2018 at MD Anderson showed growth in lung tumors that were 4mm to 6mm in November 2017 and are now 1cm to 1.5cm, also growth in hilar (lymph) nodes and now possible cancer in mammary node. Sounds really scary. The April 2018 scan didn't sound as bad but now I'm getting worried about surviving.
So I am starting back on chemo this week - a reduced dose of Folfiri. Hopefully I'll be able to tolerate it this time.
Not sure if this clinical trial will work for me (or if it will even start). If not, I am praying that something better will be developed.
I'd love to hear from anyone who has been part of a clinical trial to learn more about the process of actually getting into them and what type of help may be available for travel and hotel costs.
Thanks for reading, and for any information you can share!
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