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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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Thank you for this response. My husband is in the same situation and the medical professionals do not understand the importance of emotional support and encouragement. I will pick up this book. Hopefully it provides us with support on how to deal with this with hope.
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?
My 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.
Wow! 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 ReactionYou 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.