“How Advocacy Leads to Better Patient Outcomes and Experiences”

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] Brad Power and Emily Kim January 8, 2025 “You need to do your research, and don't be afraid to speak up if you find things. Present that to your care team. Have the information with you.” – Steven Merlin “Always write down things.

I’m a big advocate of using the patient portal, so that between my follow-up exams, I'll make notes and put it in there to make them aware of how I'm feeling, so that they can then address it when I go there, in case I forget it.” – Steven Merlin “Stay attuned to your body. If something's not right, don't say, ‘I'm going to wait and see if it goes away.

’ If it hasn't cleared up within five days, go see your primary care specialist.” – Steven Merlin Meeting Summary One of the core values of the Cancer Patient Lab is advocating for yourself and sharing what you have learned on your cancer journey, so that others who follow can better advocate for themselves, all in the pursuit of better experiences and outcomes.

But what does being an advocate for yourself and others look like? Consider the story of Steven Merlin. Steven is a 12-year survivor of stage IV (metastatic) pancreatic cancer. He was diagnosed in 2012 and underwent the standard surgery (Whipple) to remove the head of his pancreas, part of his small intestine, gallbladder, bile duct, and lymph nodes.

Because metastatic disease was detected a week post-Whipple, the medical center tumor board recommended palliative treatment only. However, having trained as a medical technologist and a career in clinical cancer research, he had a basic knowledge on cancer biology and treatment in general.

He embarked on learning as much as he could, using the resources of several professional organizations on the internet, ranging from pancreatic cancer advocacy organizations and websites of the National Cancer Institute (NCI), the American Society of Clinical Oncology (ASCO), and the American Cancer Society.

He realized that palliative care was not an aggressive enough treatment for him as his goal was cure, so he advocated for more chemotherapy treatment (FOLFIRINOX) than the standard, to achieve his goals of becoming a long-term survivor, if not cured. He was an exceptional responder to this more aggressive treatment than what was recommended.

From his personal experiences of his treatment and care, Steven realized that there was a need to mentor and educate patients and caregivers on patient advocacy. At first he became active in policy advocacy on behalf of the Pancreatic Cancer Action Network. Serving as a volunteer mentor in the PanCAN.

org Survivor and Caregiver program allowed him to see where healthcare was deficient in addressing the basic needs of patients that lead to improving quality of life and better outcomes.

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin

r program allowed him to see where healthcare was deficient in addressing the basic needs of patients that lead to improving quality of life and better outcomes. To educate patients and caregivers on the importance of self-

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] advocacy, he is actively engaged on social media sites, PanCAN, and LetsWinPC, drawing attention to the various treatments and procedures that should be explored, and considering clinical trials earlier in one’s treatment that may provide better outcomes.

What lifestyle factors are most helpful in managing pancreatic cancer, and how can you incorporate these into your care? ●Diet: Follow a low-fat, non-fat diet, but allow yourself some indulgences like red meat and desserts occasionally – a balanced diet is important.

●Exercise: Exercise regularly, aiming for at least 150 minutes per week, through activities like walking, using a stationary bike, and stair climbing. ●Monitor: Be attuned to your body. Don't ignore symptoms. ●Proactive: Don’t be afraid to advocate for yourself. What role does genetic testing play in the management of pancreatic cancer, and how often should it be repeated?

●At diagnosis: Lean into getting genetic testing, especially if you have a family history of cancer. ●Treatment selection : If you find you have a mutation, e.g., BRCA2, it can guide your search for clinical trials. ●Monitoring: You should not assume your genetic profile is static.

Regular genetic/genomic testing can identify whether your mutations change or the development of new primary cancers, which will impact your treatment options. How can patients effectively advocate for themselves and stay informed about their treatment options? ●Be organized: Keep detailed records, e.g., notebooks with all your lab results, radiology reports, and other medical information.

Scan paper records onto your computer to easily access and share your medical history and test results with your care team. ●Conduct research : Use online resources like clinical trial databases, medical journals, and AI-powered tools to research treatment options. Proactively look for clinical trials that might be a good fit, especially those targeting your mutations.

●Communicate: Don’t be afraid to speak up, question your doctors, and advocate for the treatments you feel are best for you. Be sure to voice your concerns and preferences, even when they differ from the initial recommendations, and make sure that your care team is aware of any changes in your condition. Be persistent.

●Use patient portals : Use the patient portal to document your symptoms and progress between appointments. ●Seek multiple opinions : Second or third opinions from other cancer specialists can be helpful in confirming treatment plans and exploring additional options. How can you learn more about advocating for yourself?

ram allowed him to see where healthcare was deficient in addressing the basic needs of patients that lead to improving quality of life and better outcomes. To educate patients and caregivers on the importance of self-

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] advocacy, he is actively engaged on social media sites, PanCAN, and LetsWinPC, drawing attention to the various treatments and procedures that should be explored, and considering clinical trials earlier in one’s treatment that may provide better outcomes.

What lifestyle factors are most helpful in managing pancreatic cancer, and how can you incorporate these into your care? ●Diet: Follow a low-fat, non-fat diet, but allow yourself some indulgences like red meat and desserts occasionally – a balanced diet is important.

●Exercise: Exercise regularly, aiming for at least 150 minutes per week, through activities like walking, using a stationary bike, and stair climbing. ●Monitor: Be attuned to your body. Don't ignore symptoms. ●Proactive: Don’t be afraid to advocate for yourself. What role does genetic testing play in the management of pancreatic cancer, and how often should it be repeated?

●At diagnosis: Lean into getting genetic testing, especially if you have a family history of cancer. ●Treatment selection : If you find you have a mutation, e.g., BRCA2, it can guide your search for clinical trials. ●Monitoring: You should not assume your genetic profile is static.

Regular genetic/genomic testing can identify whether your mutations change or the development of new primary cancers, which will impact your treatment options. How can patients effectively advocate for themselves and stay informed about their treatment options? ●Be organized: Keep detailed records, e.g., notebooks with all your lab results, radiology reports, and other medical information.

Scan paper records onto your computer to easily access and share your medical history and test results with your care team. ●Conduct research : Use online resources like clinical trial databases, medical journals, and AI-powered tools to research treatment options. Proactively look for clinical trials that might be a good fit, especially those targeting your mutations.

●Communicate: Don’t be afraid to speak up, question your doctors, and advocate for the treatments you feel are best for you. Be sure to voice your concerns and preferences, even when they differ from the initial recommendations, and make sure that your care team is aware of any changes in your condition. Be persistent.

●Use patient portals : Use the patient portal to document your symptoms and progress between appointments. ●Seek multiple opinions : Second or third opinions from other cancer specialists can be helpful in confirming treatment plans and exploring additional options. How can you learn more about advocating for yourself?

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merl

ments. ●Seek multiple opinions : Second or third opinions from other cancer specialists can be helpful in confirming treatment plans and exploring additional options. How can you learn more about advocating for yourself?

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] ●Contact Steven Merlin at smerlin@pancanvolunteer.org.

●“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] ●"A Marketing Analytics Expert’s Journey Through Testicular Cancer Treatment" (Scott Petinga) [#123] ●“Permission to Be Pissed” (Matthew Zachary) [#69] ●“Self-Advocacy in the Era of Precision Medicine” (Rome Madison) [#133] The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action.

You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] Meeting Notes KEYWORDS pancreatic cancer, Whipple procedure, clinical trials, PARP inhibitors, genetic testing, BRCA mutation, self-advocacy, FOLFIRINOX, surveillance scans, patient portal, financial toxicity, clinical research, metastatic disease, patient care, medical technology SPEAKERS Steven Merlin (87%), Brad Power (6%), Roger Royse (3%), Rick Davis (2%), Ellen Miller (1%), Bill Paseman (1%), Alane Watkins (0%) SUMMARY Steven Merlin, a former medical technologist and clinical researcher, shared his journey with pancreatic cancer.

Diagnosed in 2012 with stage four mixed tumor type of acinar cell carcinoma and ductal adenocarcinoma, he underwent a Whipple procedure and 46 cycles of FOLFIRINOX, achieving a 80% tumor shrinkage of the largest tumors and elimination of the smaller tumors He discovered a BRCA2 mutation and enrolled in a clinical trial using the PARP inhibitor rucaparib, which he has taken for over 10 years.

Merlin emphasized the importance of self-advocacy, frequent surveillance scans, and staying informed. He also highlighted the role of genetic testing, the benefits of clinical trials, and the need for persistent advocacy in cancer care.

OUTLINE Steven Merlin's Background and Initial Diagnosis ●Steven Merlin was trained as a medical technologist and transitioned into clinical research at the National Institutes of Health. ●His initial symptoms of pancreatic cancer included darkened urine. ●His primary care physician initially dismissed his concerns.

●His primary care physician referred him to Weill Cornell Medical College, where he was diagnosed with a rare type of pancreatic cancer called acinar cell carcinoma .

cancer included darkened urine. ●His primary care physician initially dismissed his concerns. ●His primary care physician referred him to Weill Cornell Medical College, where he was diagnosed with a rare type of pancreatic cancer called acinar cell carcinoma .

Initial Treatment and Advocacy ●Steven underwent a Whipple procedure quickly after his diagnosis, which involved removing the head of the pancreas, part of the bile duct, the gallbladder, and part of the duodenum. He also had portal vein resection due to vascular involvement. ●He was diagnosed with stage four pancreatic cancer.

●His oncologist initially placed him on palliative treatment, but he advocated for himself and switched to a more aggressive treatment called FOLFIRINOX. ●He completed 46 cycles of FOLFIRINOX over 24 months, which led to a significant reduction in the size of his tumors.

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] ●Steven began searching for clinical trials to further his treatment, using websites like clinicaltrials.gov and PanCAN.org. ●His persistence paid off when he found a pilot study at the University of Pennsylvania using a PARP inhibitor, which showed promising results in two patients.

●He contacted the National Cancer Institute and the Pancreatic Cancer Action Network to inquire about the trial, eventually securing an interview at the University of Pennsylvania. ●His genetic testing revealed he had a BRCA2 mutation, which led him to focus his trial search on PARP inhibitors.

Advocacy and Self-Advocacy Techniques ●Steven emphasized the importance of being organized and keeping detailed records of his medical history and test results. ●He used various resources, including patient portals and online databases, to stay informed about his condition and potential treatments.

●He advocated for more frequent surveillance scans to monitor for recurrence, which his insurance covered without issue. ●He also involved himself in government advocacy to address issues like the high cost of medications and financial toxicity.

Clinical Trial Participation and Long-Term Survival ●Steven participated in a clinical trial using a PARP inhibitor called rucaparib, which he has been on for over 10 years. ●He experienced some side effects, including anemia, but managed them by reducing his dosage and taking periodic breaks.

●His persistence and advocacy led to his long-term survival, and he continues to monitor his condition with regular scans and blood tests. ●He encourages other patients to be proactive in their care, stay informed, and advocate for themselves.

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] TRANSCRIPT Brad Power This is the Cancer Patient Lab. We're honored to have Steven Merlin with us. He's an example of a very engaged patient, and you'll hear his story and how he managed to get actively involved in his care

Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] TRANSCRIPT Brad Power This is the Cancer Patient Lab. We're honored to have Steven Merlin with us. He's an example of a very engaged patient, and you'll hear his story and how he managed to get actively involved in his care.

He's with us here today in a relatively healthy state because of the interventions that he did and the things that he [monitored] at various points in his journey to make certain treatment decisions. This is for informational purposes only. We like to arm patients and caregivers with information they can take to their medical team. This is not medical advice.

We are a volunteer-led nonprofit and welcome any donations that you could make to our community. You can do that through our website, where there's a Donate button. Steven is an exceptional patient, and he has an amazing story to tell about his journey with pancreatic cancer. Steven Merlin 1:39 Thank you, Brad. I'm happy to be here, and thanks to all of you that are attending this meeting today.

I will give you a brief executive summary of my background. I initially trained as a medical technologist from 1979 to 1980 in a local medical center. My first exposure to pancreatic cancer was sitting in the patient Grand Rounds, listening to the case presentations, and thinking to myself, “There's one cancer I never want to have.

” Back in 1979, there were generally no drugs for [pancreatic cancer]. If you had a low stage diagnosis and were eligible for the Whipple procedure, you had the best chances of survival, but even then they were still low.

After I became a medical technologist, I quickly transitioned into clinical research and began my career at the National Institutes of Health; at one point I was working on a collaborative study with Dr. Anthony Fauci. I started off in immunology and then began to get involved in cancer research.

In 2012, I was working in the Department of Pathology at Weill Cornell Medical College in New York City when I started to get the initial symptoms of pancreatic cancer. After five days of having darkened urine, I decided to go see my primary care physician who pronounced me to be the picture of health.

He [checked] my vitals–everything was fine–and he said if I didn't feel better, I should come back at the end of the week. Well, I didn't feel any better, I didn't feel any worse, so I went back and said, “There's something really wrong here.” And having been a med tech, I made some suggestions on doing liver function tests.

I was at the age of 55 at the time– my father, at the age of 55, had gallbladder disease. From the presentation of symptoms, I thought, “Maybe this is related to having gallstones.” We did liver function tests and a few other things, and that led to my getting a sonogram.

“How Advocacy Leads to Better Patient Outcomes and Experiences” (Steven Merlin) [#126] When the sonograms showed that there were no gallstones o