• Enjoying life
• Staying on treatment
• Volunteering with other patients
• Taking a new career path
We contacted some of the people who were on clinical trials or new drugs, to see what was happening in their lives now. Here’s what four of them have to say.
Lynne was diagnosed with stage IV pancreatic cancer in December 4, 2015. After treatment stopped working, she joined a clinical trial.
I just had my 6-month scan in mid-July, and I am so blessed to say that I am still cancer-free.
I wish I could say that the treatment I had on the clinical trial is the cure for pancreatic cancer but we honestly don’t know why it worked on me. But that’s why I tell survivors to NEVER give up and to pursue clinical trials. My trial was a phase I “Hail Mary” and there may be a treatment that works for you! I’ve spoken to many survivors from around the world and I pray that I have given them hope.
My husband and I rescued a puppy last year during the pandemic, and she is the most wonderful companion and has made our lives so rich! We are thrilled to be out of quarantine and are visiting friends and family again! We are taking a tour to Israel in October (a lifelong wish), and we are so excited about that.
I bought a cruiser bike on Sunday and my quads are screaming from the exercise! I haven’t gone back to the gym because I love working out at home while watching Netflix.
Life is sweet, and I thank God every day for it.
When Earl was diagnosed with stage IV pancreatic cancer, he joined a phase I clinical trial that combines FOLFIRINOX and a new drug.
On September 30 it will be six years since my diagnosis.
I’m still well, and on chemo #134—that’s right, 134 rounds of chemotherapy. I get chemo every two weeks for three days. I feel fairly crappy for two days after but it’s worth it to be alive and happy. It was decided that I would stay on chemo as long as my body would tolerate it. So far, so good.
There were 18 people in my phase I study. ME???? I’m the fifth person to have good results of the 18 and I’m also the last one left. Three of the other people were thought to be cured and stopped chemo. One by one, the pancreatic cancer came back and took them. We had another woman make it to three years but she never came off chemo.
In these five-plus years I’ve gotten to see my three older grandkids grow up. I’ve gotten to stand as best man when my son got married. I’ve gotten to see his son born and start walking and just begin talking.
The pandemic has limited my activities a little. We planned to go to Burning Man again this year but it was cancelled again. My oldest daughter lives in Canada, and I hope to be able to go there next week to see my three older grandchildren. We haven’t seen them for about 20 months—before the pandemic we saw them about four times per year.
I still have my blog, which I update when I can.
Genomic profiling of Roy’s tumor led him to treatment with Keytruda before it was approved for use in Canada.
It has now been nearly 4.5 years since my diagnosis with stage III/IV pancreatic cancer, and more than 1.5 years since my final infusion with Keytruda (pembrolizumab), the immunotherapy drug that saved my life. The day I “rang the bell” to mark the end of treatment and walked out cancer-free is a day we thought we would never see. Today, I continue to have no evidence of disease, which my oncologist refers to as a “durable response.” He has even suggested I could be cured, but there is always uncertainty with this diagnosis.
With my new lease on life, I have been volunteering as a peer support volunteer with Wellspring Calgary (which offers support services for people living with cancer), spending time with my wife and our rescue dog, traveling out to the mountains in British Columbia, and occasionally doing woodworking in my shop. As COVID-19 restrictions lift, I have been meeting friends for coffee and seeing more of my two daughters. Lastly, I continue to advocate for genomic profiling and for more affordable access to immunotherapy. While there is still a long way to go, I am happy to report that my oncologist will be referring all his pancreatic cancer patients for genomic profiling moving forward, and Keytruda is being approved for more and more cancer types in Canada (the latest being colon cancer associated with mismatch repair deficiency, which is the type of genetic mutation I have).
While there are ongoing ups and downs in my health due to complications with my permanent biliary stent, hypertension, and hypothyroidism (all relics of past cancer treatments), all in all, I am doing exceptionally well for a 62-year-old stage III/IV pancreatic cancer survivor. I am extremely grateful for all the players who have made the seemingly impossible possible.
Shannon was patient 1 on a clinical trial after her pancreatic cancer diagnosis.
I’m eight years out and doing really well! I’m healthy and happy—active, working, and enjoying life with a new appreciation! My kids have launched out on their own and I have a new career at a global tech company!
I am seen at MD Anderson annually for scans, and I remain “NED” (No Evidence of Disease). I still see a nutritionist at MD Anderson. The nutritionist monitors my food and advises me of my nutritional status and what needs to be adjusted. B vitamins, calcium, iron, magnesium, and vitamin D3 in addition to a good multivitamin are staples. I continue to take CREON enzymes. I live life fully—my only difference from a non-pancreatic cancer patient is the supplements and Creon. All my other functions are essentially normal!
I continue to talk with pancreatic cancer patients who are looking for insight and “tips and tricks.” I accepted long ago that pancreatic cancer, unlike other cancers, is a never-ending war—not a battle—and that my self-care is a life change. We’re in it for the long haul, but it is so worth it! Every day is a gift!