PMP Pals Resource Roundup: Late Summer 2024
We’re always scanning medical journals, practitioner magazines, cancer-focused blogs, and our partner websites for resources about this rare disease. Depending on where you are on your appendix cancer journey, you may be searching for information about current treatment practices, recovering well, and technology advancements showing promise in 2, 5, or 10 years. Be sure to check the footnotes references at the end of every reading. Here’s what we turned up this past week that may be of interest to you:
Appendix Cancer Articles (8)
Articles related to Colorectal Cancer (CRC) (2)
Hydroxygenkwanin suppresses peritoneal metastasis in colorectal cancer by modulating tumor-associated macrophages polarization, ScienceDirect, June 2024
FDA Approves Lonsurf Plus Avastin for Metastatic Colorectal Cancer, Cure, August 2023
General Cancer Articles (8)
Molecular and Clinicopathologic Impact of GNAS Variants Across Solid Tumors, Journal of Clinical Oncology, August 2024
Treating the Whole Person: How Cancer Centers Are Addressing Social Needs, National Institute of Cancer, July 18, 2024
The Growing Use of Liquid Biopsy in Oncology, Nurse Oncology Advisor, July 19, 2024 (additional references at article end)
Cancer Survivors Are More Likely to Report Mobility, Self-Care Disabilities, Nurse Oncology Advisor, July 19, 2024 (additional references at article end)
Mass General Cancer Center Researchers Identify Gene That Helps Cancer Cells Spread Throughout the Body, MassGeneral Hospital, June 2024
The Importance of Social Support in Helping Patients with Cancer Deal With Change, Oncology Nurse Advisor, May 2024
Medicare Limits Cancer Patients’ Access to Home Infusions. A New Bill Could Change That, Oncology Nurse Advisor, August 2023
Cancer Survivors With Functional Disabilities Have Higher Health Care Costs, Oncology Nurse Advisor, August 2023
Scientists Make Skin Cells 30 Years Younger, Nice News, July 2022
Got a resource to share with our Pals community? Email us the link for our next article round-up.
Photo by Ashni on Unsplash
Your Pals on HOPE Zoom: Hair Loss, Death Cafes, Multiorgan Transplant
You never know what you are going to hear about on HOPE Zoom (register here)…last week, we shared our common experience and sought-after information on:
HOPE Zoom, Wednesdays 6pET/3pPT and Saturdays 11aET/8aPT
Twice a week, we gather online to talk about appendix cancer. Open to patients, care partners, and support people, HOPE Zoom allows us to ask questions, share our vulnerabilities, and draw on the strength of others to get us through difficult times. We share joys, successes, and NEDs, too! You are welcome to join us according to your schedule. Meetings usually last 1.5-2 hours, but you can leave at any time. Register here for the link valid for Saturdays at 11aET/8aPT and Wednesdays 6pET/3pPT.
This week on HOPE Zoom, we touched on these topics:
- Going on disability and the nuances of SSI and SSDI
- Stage IV Appendix Cancer is not like other Stage IV cancers
- The Shock of Diagnosis and how we cope by consulting Dr. Google or sticking our heads in the sand
- Grasping at whatever we can control or influence
- Remembering we can only control our attitudes and actions
- Accepting feelings of helplessness and hopelessness, allowing the emotional process to unravel
- Having NO need to be Polly Positivity, allowing “Feel the FEELS,”
- Setting aside a time and day without cancer talk
- Acknowledging our internal dialogue “I feel fine. Do I really need to get this surgery?”
- Asking that question and discovering the reasons why you do need to get this surgery: cancer grows, it doesn’t belong there, it crowds out other organs and inhibits normal digestive function, mucin hardens which creates a host of other problems, your health only gets worse-do Inot better, seize the opportunity to get surgery now while you are healthy vs waiting until crisis and frailty
- It’s ok not to be hungry and what might be causing it: stress, body diverting energy to fight off cancer, musin’s internal pressure, So much is being learned about The Brain-Gut Connection
- Remembering to eat your protein!
- The importance of prehabbing and rehabbing, and when to pass the baton to your surgical team
- Yes, you can request to talk to your surgeon before entering the operating room (especially if you haven’t met him in person before)
- Trusting your medical team is there for you after the surgery, too!
- The shortcomings of our respective health systems and feeling left behind
- NEDs and advancing illness
- Anticipation of CRS/HIPEC surgeries
- And a whole lot more!
If you’ve got a question about appendix cancer, PMP, pathology, surgery, and living beyond a rare cancer diagnosis, join us.
Pal Lindsay B. talked with three appendix cancer specialists on the Society of Surgical Oncology’s podcast, SurgOncToday. Moderated by PMP Pals Medical Advisory Board member Dr. Melanie Ongchin of the University of Pittsburgh Medical Center (UPMC), Lindsay spoke about fertility issues facing women with peritoneal cancer diagnoses. Thrust into an immediate decision-making scenario, on top of dealing with a cancer diagnosis, women need solid information in real time to decide how to preserve their options for future parenthood. Joining the conversation are Dr. Trang Nguyen from Washington University and Dr. Molly Kledzik from WVU.
Thanks Lindsay for being a patient advocate and Pals ambassador, and speaking openly about these issues that face women navigating appendix cancer, its related conditions like PMP, and the rare disease journey.
Amber is the official color of Appendix Cancer Awareness. It symbolizes the courage, strength, and resilience of appendix cancer patients, care partners, and their families. Working together, we aim to raise awareness among a wider community through shared messaging. Together we are stronger and louder…tog (ACPMP)ether we can make a difference!
PMP Pals, Appendix Cancer PMP Research Foundation (ACPMP), Pseudomyxoma Survivor, and CANCollaborate are united in enhancing understanding and support for patients with appendix cancer and the related condition pseudomyxoma peritonei. We’re advocating for more patient and care partner considerations, aggressive research to discover new treatments, and approval of existing, off-label uses. The goal? A cure, be it immunotherapy, chemotherapy cocktails, improved best practices, or early detection.
Join us this August as we come together to shine a light on appendix cancer and support those battling this rare and challenging disease. Here’s what you can do:
Pals Living Life: Patient Advocate Lindsay B. Talks Fertility on SurgOncToday Podcast