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Celebrating Life after Pancreatic Cancer!
Today is May 9. Five years ago, on May 9, 2014, I was diagnosed with pancreatic cancer. Two days after my diagnosis, my wife and I went to church with our son. On that day the pastor preached a sermon on Romans 8:28. “And we know that all things work together for good to those who love God, to those who are called according to His purpose.” As we left church that morning, we did not know what the future held for us, but we were assured that God would be with us. Three weeks after preaching that sermon, the pastor's wife died of pancreatic cancer. When I told my boss that I had pancreatic cancer, he was concerned because his father died 6 months after being diagnosed with pancreatic cancer. My Whipple procedure was done on June 5, 2014. On that day, my brother-in-law was diagnosed with pancreatic cancer. He lived for another 20 months before the cancer took him. Two years ago, my cousin was diagnosed with pancreatic cancer. He died 10 days later. My grandpa died before I was born, but last year I found out that he died of heart failure a few days after having surgery for pancreatic cancer. When I was diagnosed, the 5-year survival rate was 5%. Now it is 9%. Today, by God's grace and because of the help I received from the doctors and nurses at Mayo, I am alive and celebrating life!
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I had to look twice to see if you wrote this response or I did. My hospital path abruptly ended last Tuesday when I was told the chemo stopped working and was being discontinued. Rush Hospital had no clinical trials available. I was not given any further options and a death sentence of weeks to possible months to live. I’ve been trying to navigate through the many trials available on the different websites, but feeling overwhelmed and frustrated by my lack of knowledge. My husband is broken. He is terrified of how to cope with life without me. PanCan has been helpful but every thing takes time which I don’t have. Meanwhile, my cancer is growing at rapid speed. My power to stay positive is shrinking.
Thank you for sharing your story. It is comforting to hear someone else mirror your experiences and feelings.
Start making your contacts at the various hospitals right now so you have some starting places. I wish you the best in fighting this hideous disease. Treasure every day.
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1 ReactionCan you elaborate for everyone the chemos you have been on and the surgeries you have had?
Often we will be eliminated based on prior treatment(s).
I don’t think trial leaders can make exceptions, but perhaps they can based on ECOG level? Just wondering based on your experience meeting physicians and clinics in person.
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2 ReactionsWow! What a testament! Congratulations 🙏💙🙏
I am so glad that you finally found a clinical trial that is working for you. What was the timeline for getting through the process? I don’t have the luxury of time on my side. How did you keep your cancer stable during all this time? Pancan has been helpful in providing resources and a case manager to oversee and aid in the process. How do you make a in person visit? Do you just contact the person in charge of the trial? So sorry for all the questions. The info you have given us has been so invaluable and greatly appreciated.
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3 ReactionsI've made in-person visits for clinical trial assessment this year to Mayo, Moffitt, MD Anderson, Sloan Kettering, Johns Hopkins, and Sarah Cannon Research (SCRI), plus a video visit to Cleveland Clinic.
The initial results were an offer at Anderson that required too much travel, and offers at Sloan and SCRI that didn't seem that appropriate or promising. There was hope a more appropriate trial at Moffitt would open in July, but it didn't.
A more promising trial (Phase 1 MOONRAY trial of Eli Lilly's KRAS G12D inhibitor) was also supposed to open in July at SCRI, but didn't start until last week (Sept 2). I was very lucky to get in! Started last week; drug is 6 pills per day by mouth; some fatigue and nausea, but overall very tolerable so far. 🙂 Much nicer than chemo!!! My eyelashes, eyebrows, and nostril hair are all starting to grow back.
Bottom line is that I didn't get far at all with "cold-call" emails or phone calls to trial coordinators I found on any of the websites. Better luck with the ones where I made in-person trips, and best results when the visit was set up by a referral from one of my existing (multitude of) doctors.
It was not easy, but it shouldn't have been that hard either. Grateful nonetheless!
Best of luck to all who are searching. Hang in there!
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4 ReactionsI am rooting for you to find a treatment program that will be effective in reducing your cancer. It makes no sense that the clinical trial won’t release information on why the treatment didn’t work especially if it could help in determining future trials. I find it daunting that the immense work to find an eligible trial falls on the individual. You are such a valuable source of
information for many of us. Please keep us updated if you find another trial.
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2 ReactionsYou have given me much food for thought. Advocacy for yourself seems to be the key to gaining information and getting treatment options. Thank you for all your help. I wish you well.
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2 ReactionsWow! You have far exceeded your survival projection from this terrible disease. You inspire hope. Thank you for the resources. We have been in touch with Pan Can since the beginning of my diagnosis. What an incredible organization with great support. I will reach out to the other places you mentioned as well.
Are you still in the same clinical trial for all these years? What an accomplishment and a testament to the importance of advocating for yourself.
Thank you for reaching out.
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1 ReactionMy trial in Houston was a stem cell infusion, just a single, one-time treatment. It required 3 weeks as an inpatient: 1 week before the infusion to run tests and do the chemo needed to prep for the stem cells, then 2 weeks of really close monitoring for adverse reactions. After discharge, 2 more weeks close to the hospital for further daily check-ups, and then allowed to return home. I was home for 2 weeks, then required to return for scans and blood tests, which indicated trial failure, so I was "let go" from the trial and returned to my previous chemo at home. If my blood and scan results had indicated any progress, I would have had to return at pre-determined intervals (6 weeks, then 12 weeks, then 18 weeks apart) for more scans and blood tests.
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Current treatment doesn't necessarily have to be failing in order to qualify for a trial. Just read the fine print in the exclusion/inclusion criteria for each one. Many explicitly state that you can participate if you've reached a point where you can't tolerate the current treatment even if it is working; worsening neuropathy is a classic example. Kidney sensitivity, bone marrow issues, vision, CNS, digestive, cardiac and pulmonary side effects are other valid reasons. It's a judgment call and a gamble if your current treatment is "sort of" working and "fairly tolerable" as was the case with mine. All the stars aligned just right for my trial (regarding insurance, time off work, a place to stay, a promising treatment that I actually qualified for, etc), but since the treatment didn't work, I wound up worse off than if I had just stayed on the previous SoC regimen.
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Regarding the travel requirements: They're likely different for every trial. I had other options that would've required me to be present only one day every three weeks for an infusion. They wanted me to stay close for another day in case of adverse reaction, but were fine with me flying home the second day after.
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As @stageivsurvivor mentions, there are resources like PanCan, LetsWinPC, TriCanHealth (and cancercommons.org?) who will do some of the legwork for you, but you are correct in that your current treating/consulting oncologist really has no explicit responsibility to help you find a trial. I find this to be sad and infuriating, but it is what it is...
I've had second-opinions consults at Mayo, Hopkins, Anderson, Cleveland Clinic, and Sarah Cannon, so I have a MyChart account and an "assigned oncologist" at each. When asked about trial options, none ever recommended one outside of trials going on at their own site. In fact, they didn't even seem to be aware of trials going on at other sites unless it was a trial they were already in negotiations to try and join for themselves. But being "in their system" does speed your access to them when you're searching.
Thank you for the very detailed response. We are just now starting the trial route. Mayo may or may not qualify. You give me hope...sometimes that is all you need. Did you sign up for one trial and then another right away or were you ready to go when one failed?