Living with pancreatic cancer can create an array of emotional and physical challenges. Fortunately, these new life difficulties can be greatly improved with the right support system in place. While family and friends can offer assistance there are many benefits to speaking with other pancreatic cancer patients and those with a shared experience. While not conventionally thought of as part of your medical team, support groups can provide a wealth of resources, tips and helpful information.

Participating in a support group online can make the difference between feeling alone and isolated versus feeling empowered and connected. Support groups can be beneficial for both the patient and the caregivers as it provides a safe space to connect with people going through comparable medical and psychological experiences. Not all support groups operate the same; some gather virtually while others are online forums where patients post questions, so take the time to find one that feels right for you.

Below are some of our partners and organizations that understand the importance of support groups for both pancreatic cancer patients and their loved ones.

• American Cancer Society provides free support services for anyone living with cancer and their loved ones. Search for support programs and services in your area.
• CancerCare provides free, professional support services for people living with cancer. They offer counseling with an oncology social worker to help cope with the emotional and practical challenges of pancreatic cancer. They also provide free online support groups for both pancreatic cancer patient and caregivers.
• Cancer Support Community offers a toll-free helpline and live web chat where anyone affected by cancer can speak with licensed counselors. Through MyLifeLine, you can create a private support webpage to stay connected with friends and family.
• WeSPARK offers an array of free support groups, from a caregivers group to a singles support group as well as in-treatment and post-treatment groups. They also offer various supplemental programs such as acupuncture, reflexology and tai chi. They advise an intake session where they review your history to better recommend programs that may be a good fit.
• Pancreatic Cancer Connections is an online social community that provides a safe space for pancreatic cancer patients and their loved ones to share their experiences, get valuable coping resources, and support one another.
• If you’re comfortable with social media, there’s a Facebook group called the Whipple Surgery Survivor Group. With patients from around the world, this vast community can be the right resource for those looking to connect with other patients on Facebook. This group does require you to have a Facebook account and posts may not be private.
• The Smart Patients Pancreatic Cancer discussion forum is an online support group for patients and caregivers dealing with pancreatic cancer. Members share help, advice and information about treatments, symptoms and side effects.
• Cancer Support Community South Bay offers a free, virtual group for pancreatic cancer patients, survivors, caregivers, and family members to build and maintain a support community from diagnosis through treatment and recovery. (Available for California residents only)
• If you’re looking to connect with other patients and caregivers, ANCAN offers a virtual peer-to-peer support group with the mission to provide all pancreatic cancer patients with a better quality of life.
• Another virtual peer-to-peer group is led by long-term survivor Tom. Tom facilitates a space for patient and caregivers to share experiences, knowledge and support. Zoom calls are every Friday from 9:00am until 10:30am PST, contact Tom for more details.

If you are a patient or caregiver with questions, contact Patient & Family Support today.

We are proud to share that our collaborative efforts with the UCLA Health Jonsson Comprehensive Cancer Center have led to a transformative $4 million grant from the National Cancer Institute (NCI). This grant aims to advance immune-based therapies for pancreatic ductal adenocarcinoma (PDAC) to improve treatment and patient outcomes.

Immunotherapy employs drugs to boost the immune system’s ability to identify and attack cancer cells. Under the guidance of Dr. Timothy Donahue, Director of the Agi Hirshberg Center for Pancreatic Diseases, Dr. Zev Wainberg, co-director of the UCLA Health GI Oncology Program, and Dr. Caius Radu, professor of molecular and medical pharmacology, a multidisciplinary team is delving deep into the role of adenosine in the immune suppression associated with pancreatic cancer. Their work seeks to understand how adenosine, a molecule in the body, affects the tumor environment and interactions between immune and cancer cells.

The grant will also fund a follow-up clinical trial examining a small molecule inhibitor combined with the existing combination of PD-1, an immunotherapy drug, and chemotherapy before surgery. Building on promising initial results, this trial seeks to diminish adenosine production within tumors, potentially boosting the immune system’s ability to fight cancer more effectively. Previous Hirshberg Foundation Seed Grant Awardees, Dr. Thuc Le and Dr. Evan Abt, have also been working to study adenosine.

“By introducing a small molecule inhibitor to the existing chemotherapy and PD-1 inhibition regimen, we hope to limit adenosine production in the tumor microenvironment, thereby enhancing the immune response against the cancer,” said Donahue in the article published by UCLA Health. “We are hopeful this strategy will help the body’s natural defenses fight the cancer more effectively, leading to better treatments for people with pancreatic cancer.”

This substantial grant is a beacon of hope. We are optimistic that this research will uncover new therapeutic strategies that target adenosine, enhancing patient outcomes and leading to better treatments.

The Hirshberg Foundation is thrilled to introduce Tom, our Honorary Starter for this year’s 27th Annual LA Cancer Challenge. Tom’s story is one of remarkable resilience, determination, and hope—a true testament to the spirit of our pancreatic cancer community.

Nine years ago, at 65 years old, Tom received a diagnosis that would change his life: stage 4 pancreatic cancer. At that time, the five-year survival rate was less than 3%, so Tom focused on one day at a time, maintaining a remarkable attitude and calm demeanor that inspired everyone around him.

Throughout his journey, Tom’s wife, Toni, has been a pillar of support. Once diagnosed, she tirelessly researched to find a great medical oncologist, which led them to Dr. Tara Seery, who they deeply respect and admire.

Immediately after his diagnosis, Tom began a clinical trial that would ultimately change the course of his disease. Through his medical team’s dedication and unwavering commitment to treatment, Tom achieved what many thought was impossible. Following the trial, he was considered to have no detectable cancer—a moment of triumph and hope for him and his loved ones. Today, at 74, Tom takes Lynparza, a maintenance chemotherapy drug. His youthful spirit and positivity have kept him strong and made him a beacon of hope for others facing similar battles.

Driven by the challenges he’s experienced and inspired by the incredible support he’s received; Tom has dedicated himself to giving back. Encouraged by his primary care physician, he started talking to other patients to offer insight, tips, and support. Before long, with another survivor, he founded a weekly Zoom support group for pancreatic cancer patients and caregivers across the U.S., creating a space for sharing experiences and building a community of strength and solidarity.

Before his diagnosis, Tom was an avid cyclist for 25 years, riding up to 20 miles daily. His passion for cycling kept him physically fit and mentally strong, preparing him for the battle ahead. In 2018, Tom took a leap of faith—literally—when he jumped out of an airplane with other pancreatic cancer survivors to celebrate their shared journey. Refusing to let pancreatic cancer take away their enjoyment of life and adventure, Tom and his fellow survivors went skydiving in Perris, California.

Before the LACC 5k race begins, Tom will take the stage to share his journey, offering all participants words of wisdom and encouragement. His story is about surviving, thriving, and finding joy and purpose every day. He embodies the message that while cancer can change the course of our lives, it does not define who we are or limit what we can achieve.

We invite you to join us at the LA Cancer Challenge, not only to support pancreatic cancer research but also to be inspired by individuals like Tom. Whether you are running, walking, or cheering from the sidelines, your participation makes a difference in the fight against pancreatic cancer.

Tom’s story is a beacon of hope and a testament to the progress in cancer research and treatment. Let his journey inspire you to push through your challenges and support those fighting theirs. See you at the starting line!

As summer kicks into gear with family vacations, hot temps, and cool adventures, the Hirshberg Foundation looks forward to sharing the latest updates with our foundation family. Your efforts throughout the year, from fundraising to event participation, have ushered in another season of groundbreaking scientific advances and patient support. Soon researchers will submit proposals for our annual Seed Grant Program, as patients, caregivers, and families gather again for seasonal events that educate and energize our community. We thank you for your continued support as we raise awareness and Never Give Up in the fight for a cure!

On April 13, 2024, the Hirshberg Foundation held the 18th Annual Symposium on Pancreatic Cancer. It was an honor to welcome Scientific Advisory Board member, Dr. Eileen O’Reilly to share a progress report on the state of pancreatic cancer research. Dr. O’Reilly is a professor of medicine at the Weill Cornell College of Medicine, a medical oncologist at Memorial Sloan Kettering Cancer Center, a principal investigator of multiple phase one, two, and three clinical trials for pancreatic cancer, and an international leader in finding ways to better treat this disease.

Dr. O’Reilly provides an overview of pancreatic ductal adenocarcinoma (PDAC), the current treatment landscape, and the shifting epidemiology of the disease. She focuses on the current and evolving treatments for advanced-stage pancreas cancer, DNA-damage-directed therapies, KRAS-directed therapies, and new emerging approaches.

A decade ago, the primary form of treatment for pancreatic cancer was limited to chemotherapy based on our understanding of the disease. Now, pancreas cancer is approached as a KRAS-altered disease, which provides a few more avenues for treatment. The current standard therapy includes three main chemotherapy options: mFOLFIRINOX, Gemcitabine with nab-paclitaxel, and NALIRIFOX. There is also emerging evidence for more use of maintenance therapy or a de-escalated chemotherapy. For certain patients, there is also the option for integration of local therapies such as radiation, surgery, or ablation.

One main area of research for pancreas cancer treatment is KRAS, as about 88 to 90% of people with pancreas cancer will have an alteration in KRAS. KRAS, an important signaling pathway in pancreas cancer, is involved in the growth and metastatic potential of this disease, and it comes in various flavors. Most common in pancreas cancer is something called KRAS G12D, followed by G12V, followed by G12R. One KRAS alteration to highlight is G12C because current regulatory approvals and drugs are available for use in the clinic to treat the small subset of individuals with this specific mutation. Targeting KRAS directly or indirectly, tackling the protein, working on the gene itself, looking to different versions of the gene, and combining it with other things are avenues of current investigation for pancreatic cancer.

Genetic targeting, in terms of BRCA1, BRCA2, and PALB2, is another important topic for pancreatic cancer treatment. Although these cases comprise 5 to 8% of this disease, they’re a very important subset that can benefit from specific treatments. These treatment options include platinum-based therapy and PARP inhibitors. Genetic targeting also influences future treatment directions, and some very interesting areas are being studied.

A great deal is happening around the globe to advance research and treatment options for pancreatic cancer. As Dr. O’Reilly said, “you’ll see that there’s real progress happening and we’re just on the cusp of I think very important developments in this disease that hopefully will translate into improvements and outcomes for people.” We thank Dr. O’Reilly for her presentation and look forward to sharing more as these treatment options develop.

Watch the full presentation →

Ensuring your comfort with the cancer treatment you select is crucial. This process begins by engaging in open and candid discussions with your healthcare team. It’s common to struggle with which questions to ask or to forget them during appointments. The following set of questions, originally featured in the NCCN Guidelines for Patients, aims to empower you with information. Whether you use these or create your own, gaining clarity on your treatment goals and expectations is essential.

Questions about cancer testing

1. What tests will I have?
2. Do the tests have any risks?
3. Do I need to do anything to prepare for testing?
4. Should I bring someone with me to the appointments?
5. Where do I go for testing and how long will it take?
6. If any of the tests hurt, what will you do to make me comfortable?
7. How soon will I know the results, and who will explain them to me?
8. How can I get a copy of the pathology report and other test results?
9. Is there an online portal with my test results?

Questions about treatment options

1. What are my treatment options?
2. Is a clinical trial an option for me?
3. What will happen if I do nothing? 
4. Are you suggesting options other than what NCCN recommends? If yes, why?
5. How do my age, sex, overall health, and other factors affect my symptoms?
6. What if I am pregnant or planning to become pregnant?
7. Does any option offer a cure or long-term cancer control?
8. What are the side effects of the treatments?
9. How do I get a second opinion?
10. How long do I have to decide about treatment and is there a social worker or someone who can help me decide?

Questions about what to expect

1. Does this hospital or cancer center offer the best treatment for me?
2. Do I have a choice of when to begin treatment?
3. How long will treatment last?
4. Whom should I contact with questions or concerns if the office is closed?
5. How will you know if treatment is working?
6. What are the chances of the cancer worsening or returning?
7. What follow up care is needed after treatment?
8. What happens if treatment stops working?

Questions about side effects

1. What are the possible complications and side effects of treatment?
2. Does the cancer itself cause any side effects?
3. Which side effects are most common and how long do they usually last?
4. Which side effects are serious or life-threatening?
5. Are there any long-term or permanent side effects?
6. What symptoms should I report right away and whom do I contact?
7. What can I do to prevent or relieve the side effects of treatment?
8. Do any medications worsen side effects?
9. Do any side effects lessen or worsen in severity overtime?
10. Will you stop or change treatment if there are serious side effects?

Questions about clinical trials

1. Do you recommend that I consider a clinical trial for treatment?
2. How do I find clinical trials in which I can participate?
3. What are the treatments used in the clinical trial?
4. Has the treatment been used for other types of cancer?
5. What are the risks and benefits of this treatment?
6. What side effects should I expect, and how will they be managed?
7. How long will I be in the clinical trial?
8. Will I be able to get other treatment if this doesn’t work?
9. How will you know if the treatment is working?
10. Will the clinical trial cost me anything?

Questions about your care team’s experience?

1. What is your experience, as well as your team’s experience, with treating my type of cancer?
2. How many patients like me (of the same age, gender, race) have you treated?
3. Will you be consulting with experts to discuss my care? Whom will you consult?
4. Is this treatment (or procedure) a major part of your practice? How often have you done this treatment (or procedure) in the last year?
5. How many of your patients have had complications? What were the complications?

Questions about supportive care?

1. What supportive care and services are available to me and my caregiver?
2. Are there any programs to help pay for out-of-pocket costs of cancer care?
3. Does this center provide transportation to and from appointments? What about childcare during health care appointments?
4. Is there help for basic needs like food and housing?
5. Where can I get legal advice? Is my job legally protected if I take a leave from work?
6. Who can help me cope with stress? Is there a support group that would be a good fit for me?
7. Who can advise me and my family about end-of life concerns?

We are here to help. For more support throughout your cancer journey, please contact us.