
My Stage 4 Pancreatic Cancer Journey | How I Found Out & How It Changed My Life
- Survivors of stage 4 pancreatic cancer often share inspiring stories of resilience, treatment journeys, and the importance of support systems.Personal Survivor StoryOne notable survivor, Marisa Harris, was diagnosed with stage IV pancreatic cancer and faced a daunting prognosis. Initially, she was advised that chemotherapy would only provide a few extra months of life.
- However, she chose to explore alternative treatments alongside chemotherapy, including dietary changes, supplements, and exercise. Despite the challenges, her tumor markers improved, and she became a long-term survivor. Marisa’s story highlights the power of personal determination and the impact of a supportive healthcare team letswinpc.org.
- General Insights on Survival
- Survival Rates: The five-year survival rate for stage 4 pancreatic cancer is low, typically around 3% to 5%. However, individual experiences can vary significantly, and some patients have exceeded expectations acibademhealthpoint.com.
- Treatment Options: While stage 4 pancreatic cancer is considered advanced and often incurable, treatments such as chemotherapy, targeted therapy, and palliative care can help manage symptoms and improve quality of life.
- Support Systems: Emotional and psychological support from family, friends, and support groups plays a crucial role in the journey of cancer survivors. Many survivors emphasize the importance of having a strong support network to navigate the challenges of their diagnosis.
- Faith, Hope, Perseverance, Stage IV – Let’s Win Pancreatic CancerFaith, Hope, Perseverance, Stage IV – Let’s Win Pancreatic Cancer
- Just before his 41st birthday, Dan, a lawyer from Cleveland, experienced a pain in his legs that led to a stage 4 pancreatic cancer diagnosis. Today, Dan is 45 years old, in complete remission and treatment-free.Dan sat down for an interview with From Stage 4 to Survivor: Dan’s Pancreatic Cancer Journey | CURE in which he shared his story. During the discussion, he shared the moment he learned of his diagnosis, and how he ultimately decided to participate in clinical trials for his pancreatic cancer treatment. He also offers his insights into life-changing medical choices, as well as the importance of advocating for oneself as a patient undergoing cancer treatment. From Stage 4 to Survivor: Dan’s Pancreatic Cancer Journey | CURE
- CURE, in which he shared his story. During the discussion, he shared the moment he learned of his diagnosis, and how he ultimately decided to participate in clinical trials for his pancreatic cancer treatment. He also offers his insights into life-changing medical choices, as well as the importance of advocating for oneself as a patient undergoing cancer treatment.Just before his 41st birthday, Dan, a lawyer from Cleveland, experienced a pain in his legs that led to a stage 4 pancreatic cancer diagnosis. Today, Dan is 45 years old, in complete remission and treatment-free.
- How did you decide to participate in a clinical trial, and what influenced your decision to pursue an experimental treatment?I did two clinical trials. The first one was an immunotherapy and a PARP inhibitor. I did Keytruda (pembrolizumab) and Lynparza (olaparib) for about two years, and then the second one was an early-stage trial.
- Both of them were through Memorial Sloan Kettering Cancer Center.I knew both from the knowledge within my family and through conversations with my treating doctors at the clinic that chemotherapy was only going to work for so long, or my body would only be able to tolerate chemotherapy for so long. That was not an end state. That was the first step of hopefully at least a few steps.
- Once we got settled back in Cleveland, once I started chemotherapy, and once I was settled into that routine, we started asking questions of my oncologist at the Cleveland Clinic: what trials was the clinic involved in? What options and opportunities did they see for me?
- We had those conversations within the Cleveland Clinic world, and then my family began looking through clinicaltrials.gov. They were comfortable enough with the vocabulary and everything else to pinpoint options based on the genetic markers I had, the stage of the disease (which was stage 4) and the fact that my tumors were responding to chemotherapy. They were able to identify different hospitals and groups around the country engaged in pancreatic cancer trials that I might eventually be eligible for.About halfway through my chemotherapy, they started sending messages, saying, “Hey, you guys are running these trials. We’d like more information.
- Could we get a secondary consultation with you?” We went through the whole clinic onboarding process, the insurance process, and ended up having consults with both the MSK team and the MD Anderson team. Through that, little by little, we got more information on what I would be eligible for, and we ended up making decisions about which paths to pursue.The important thing about that — there are a couple of things. Number one: patients need to advocate for themselves. They need to ask questions as early as possible: “Is this working? What’s next? What can I do next?
- How can I find out what to do next?” If that involves seeing other doctors, no doctor should be upset that you’re seeking additional opinions. It’s strange, patients facing something as difficult as stage 4 pancreatic cancer won’t necessarily want to let their doctor know they’re seeing another doctor, or they might not want to ask about other doctors because they don’t want to be impolite, hurt someone’s feelings, or think the doctor will get annoyed. Any doctor I’ve met does not think that way.Patients need to feel comfortable asking for secondary consults, other opinions, and additional opportunities. Not every oncologist has all the information.
- Different people are doing different things at different times, and treating oncologists aren’t necessarily the same people conducting the trials. The more information you can get, the more questions you can ask, and the more conversations you can have, the higher the possibility you will uncover opportunities your treating oncologists didn’t know existed.Outside of conversations with your doctor, if you can figure out how to use clinicaltrials.gov, that is a great resource. It’s not very user-friendly, and the vocabulary can be difficult, but ChatGPT plus clinicaltrials.gov can help identify potential trials you can then discuss with doctors who might have other opportunities.
- I would really encourage people to do both of those things to the extent they can.How did you decide to participate in a clinical trial, and what influenced your decision to pursue an experimental treatment?I did two clinical trials. The first one was an immunotherapy and a PARP inhibitor. I did Keytruda (pembrolizumab) and Lynparza (olaparib) for about two years, and then the second one was an early-stage trial. Both of them were through Memorial Sloan Kettering Cancer Center.
- I knew both from the knowledge within my family and through conversations with my treating doctors at the clinic that chemotherapy was only going to work for so long, or my body would only be able to tolerate chemotherapy for so long. That was not an end state. That was the first step of hopefully at least a few steps.Once we got settled back in Cleveland, once I started chemotherapy, and once I was settled into that routine, we started asking questions of my oncologist at the Cleveland Clinic: what trials was the clinic involved in?
- What options and opportunities did they see for me? We had those conversations within the Cleveland Clinic world, and then my family began looking through clinicaltrials.gov. They were comfortable enough with the vocabulary and everything else to pinpoint options based on the genetic markers I had, the stage of the disease (which was stage 4) and the fact that my tumors were responding to chemotherapy. They were able to identify different hospitals and groups around the country engaged in pancreatic cancer trials that I might eventually be eligible for.About halfway through my chemotherapy, they started sending messages, saying, “Hey, you guys are running these trials. We’d like more information. Could we get a secondary consultation with you?”
- We went through the whole clinic onboarding process, the insurance process, and ended up having consults with both the MSK team and the MD Anderson team. Through that, little by little, we got more information on what I would be eligible for, and we ended up making decisions about which paths to pursue.
- The important thing about that — there are a couple of things. Number one: patients need to advocate for themselves. They need to ask questions as early as possible: “Is this working? What’s next? What can I do next?
- How can I find out what to do next?” If that involves seeing other doctors, no doctor should be upset that you’re seeking additional opinions. It’s strange, patients facing something as difficult as stage 4 pancreatic cancer won’t necessarily want to let their doctor know they’re seeing another doctor, or they might not want to ask about other doctors because they don’t want to be impolite, hurt someone’s feelings, or think the doctor will get annoyed. Any doctor I’ve met does not think that way.
- Patients need to feel comfortable asking for secondary consults, other opinions, and additional opportunities. Not every oncologist has all the information. Different people are doing different things at different times, and treating oncologists aren’t necessarily the same people conducting the trials. The more information you can get, the more questions you can ask, and the more conversations you can have, the higher the possibility you will uncover opportunities your treating oncologists didn’t know existed.
- Outside of conversations with your doctor, if you can figure out how to use clinicaltrials.gov, that is a great resource. It’s not very user-friendly, and the vocabulary can be difficult, but ChatGPT plus clinicaltrials.gov can help identify potential trials you can then discuss with doctors who might have other opportunities. I would really encourage people to do both of those things to the extent they can.
- Faith, Hope, Perseverance, Stage IV – Let’s Win Pancreatic Cancer Faith, Hope, Perseverance, Stage IV – Let’s Win Pancreatic Cancer Stage 4 Pancreatic Cancer Survivor – Search Images