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
Media Kit: One in a Million 5K Run/Walk Benefitting PMP Pals Network
RELEASE DATE: August 6, 2024
EVENT DATE: September 14, 2024
5K RACE CONTACT: Sheri Doss, San Antonio appendix cancer survivor, sheridoss@pmppals.net 210-262-2538
PMP PALS CONTACT: Charmaine Skillman, Austin appendix cancer survivor, charmaine@pmppals.net 512-694-8300
PRESS CONTACT: Tara Collins, care partner tara@pmppals.net 607-643-5148
PRESS RELEASE HERE: https://pmppals.net/one-in-a-million-5k-run-walk-benefits-global-rare-cancer-peer-community/
HEADLINE: One in a Million 5K Run/Walk Benefits Global Rare Cancer Peer Community
SUBHEAD: Appendix cancer survivor and local San Antonian Sheri Doss spearheads local event to highlight health, wellness, appendix cancer, and a birthday she was not destined to see
HOOKS:
- August is Appendix Cancer Awareness Month. Amber is this rare disease “ribbon” color.
- Local resident is a member of a global community of rare disease survivors beating the odds and living well beyond an appendix cancer diagnosis.
- Interesting Facts about Appendix Cancer:
- Appendix cancer affects one in a million people globally each year.
- Appendix cancer is on the rise, particularly among people under 40.
- Appendix cancer generates a condition called Pseudomyxoma Peritonei, or PMP, a mucin which creates abdominal complications that inhibit a long life.
- Appendix cancer is a rare disease with no cure but has life-extending best practices when diagnosed early and treated appropriately.
- The Standard of Care for APpendix cancer is the MOAS – Mother of All Surgeries – which includes extensive removal of peritoneal organs called Cytoreductive Surgery (CRS) coupled with HIPEC, Hyperthermic Intraperitoneal Chemotherapy. Other treatments include systemic chemotherapy, immunotherapy, PIPAC.
- HIPEC involved filling the belly cavity with a heated chemotherapy solution and “bathing” the organs for a period of up to 90 minutes.
IMAGES:
L-R: Sheri Doss; Sheri & Harold Doss; Hope the Bear Awards; One in a Million logo; PMP Pals logo; Sheri & Harold with family; more images available upon request
INTERVIEW CANDIDATES:
Sheri & Harold Doss (PMP Pals couple in SATX, race director) Sheri Doss, San Antonio appendix cancer survivor, sheridoss@pmppals.net 210-262-2538
Dr. Armando Sardi, Mercy Hospital, Baltimore, MD (Sheri’s physician)|
Charmaine Skillman, Austin, TX (Pals Treasurer/Event Coordinator, 25-year survivorTara Collins, Little Egg Harbor, NJ (Care partner to husband diagnosed in 2022 with second most aggressive subtype-appendiceal goblet cell adenocarcinoma)
REFLECTIONS FROM PMP PALS WORLDWIDE:
Christine Hill & family (4 generations of Pals in Minnesota)
Lindsay Wolfram (international Pal in Canada)
Adele Jasion, Illinois (Pals President, 14-year survivor)
LINKS OF INTEREST:
PMP Pals https://www.pmppals.net
One in a Million 5K Run Walk registration page: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/register
5K sponsorships: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/sponsor
5K sponsorship tiers: https://i0.wp.com/pmppals.net/wp-content/uploads/2024/08/OIAM-5K-In-Sponsorships-Graphic.png
5k donations: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/charity/charity/pmp-pals-8445
ONE IN A MILLION 5K RACE DETAILS:
Virtual & In-person: September 14, 2024
Lady Bird Johnson Park, 10700 Nacogdoches Rd, San Antonio, TX 78217
REGISTRATION: 5K and Virtual https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/register
PACKET PICKUP:
September 12, 4-7p at La Tea Da, 434 N Loop 1604 W, Ste 1101, San Antonio
RACE DAY:
7:30am Event-day registration & packet pick-up
8:30am Welcome
9:00am Race start
10:00am beginning of awards ceremony and random bib number drawings for door prizes
This is a certified 5K with chipped timing. Results will be posted immediately after the race.
RACE PROFILE:
- 5K Run/Walk is an out-and-back profile.
- Length is approximately 1.5 miles each way.
- A half-mile turnaround is marked for short-course participants. 1-milers are welcome. All participants on course must sign a waiver.
- Bring a friend.
- Strollers allowed.
- Sorry, no pets this year.
- COURSE MAPS: 5K Run/Walk Course
- This is a rain-or-shine event! Remember to dress appropriately for the event!
PMP PALS SOCIAL PLATFORMS:
Facebook: https://www.facebook.com/pmppalsnetwork
Instagram: https://www.instagram.com/pmp_pals/
LinkedIn: https://www.linkedin.com/company/pmppalsnetwork/
YouTube: https://www.youtube.com/user/PMPPals
Website: www.pmppals.net
ONE IN A MILLION 5K RACE DETAILS:
Virtual & In-person: September 14, 2024
Lady Bird Johnson Park, 10700 Nacogdoches Rd, San Antonio, TX 78217
REGISTRATION: 5K and Virtual https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/register
PACKET PICKUP:
September 12, 4-7p at La Tea Da, 434 N Loop 1604 W, Ste 1101, San Antonio
RACE DAY:
- 7:30am Event-day registration & packet pick-up
- 8:30am Welcome
- 9:00am Race start
- 10:00am beginning of awards ceremony and random bib number drawings for door prizes
- This is a certified 5K with chipped timing. Results will be posted immediately after the race.
RACE PROFILE:
- 5K Run/Walk is an out-and-back profile.
- Length is approximately 1.5 miles each way.
- A half-mile turnaround is marked for short-course participants. 1-milers are welcome. All participants on course must sign a waiver.
- Bring a friend.
- Strollers allowed.
- Sorry, no pets this year.
- COURSE MAPS: 5K Run/Walk Course
- This is a rain-or-shine event! Remember to dress appropriately for the event!
AWARDS:
The One in a Million 5K bestows HOPE; our mascot, Hope the Bear, is the honorary award this year. Created and handcrafted by California resident Linda Abrao, these bears symbolize Hope. We’re excited to hand out over 55 bears as part of our award ceremony on September 14.
Awards for top overall finisher: 1st Place Male and Female
Age Group Awards: 1st Place Male and Female
(Male 15-19, Male 20-29, Male 30-39, Male 40-49, Male 50-59, Male 60+
Female 15-19, Female 20-29, Female 30-39, Female 40-49, Female 50-59, Female 60+)
Appendix cancer survivor and local San Antonian Sheri Doss spearheads local event to highlight health, wellness, appendix cancer, and a birthday she was not destined to see
RELEASE DATE: August 6, 2024
EVENT DATE: September 14, 2024
5K RACE CONTACT: Sheri Doss, San Antonio appendix cancer survivor, sheridoss@pmppals.net 210-262-2538
PMP PALS CONTACT: Charmaine Skillman, Austin appendix cancer survivor, charmaine@pmppals.net 512-694-8300
PRESS CONTACT: Tara Collins, care partner tara@pmppals.net 607-643-5148
MEDIA KIT & IMAGES: https://pmppals.net/media-kit-one-in-a-million-5k-run-walk/
August 12, 2024, San Antonio, TX – San Antonian Sheri Doss is grateful to be alive and celebrating an upcoming milestone birthday. Three years ago, things weren’t so certain. In 2021, Sheri was diagnosed with Pseudomyxoma Peritonei (PMP), a rare disease associated with appendix cancer that affects a small cross-section of the world – people of all ages, shapes, genders, and nationalities. After undergoing an intense lifesaving surgery, her health returned due, in large part, to her daily walking routine. Sheri thrives because of her positive attitude, love for walking, and the online support she found through PMP Pals.
According to Sheri, “I want my friends, family, and San Antonio community to get moving! Walking is important to overall health, but also a wellness marker for those recovering from the Mother of All Surgeries.” Sheri created the One in a Million 5K Run/Walk, not just to celebrate her 60th birthday, but to raise awareness of appendix cancer which is on the rise.. “We are celebrating life on September 14. Lace it up and come run, walk, or stroll with us. I want to give something back, to Pals, and my neighbors; I’d love to see you there to support a great cause.”
Fellow appendix cancer survivor and PMP Pals board member Charmaine Skillman of Austin, TX adds, “It’s been 26 years since I was first diagnosed with Stage IV appendix cancer. The last 15 years I have lived with No Evidence of Disease, what we call ‘NED.’ Many people go misdiagnosed for years before an accurate assessment of their pathology reveals this rare cancer. Many of us receive life-extending treatment in time, others are not so lucky. PMP Pals is a global peer support community that helps patients and care partners navigate the complexity of an appendix cancer diagnosis, treatment, and life afterward. There are four subtypes of appendix cancer and its symptoms, if any, mimic those of other more common conditions. Stage IV appendix cancer does not need to be a death sentence. It does, however, require consultation with an appendix cancer specialist. Depending on the disease subtype, progression is slow or fast. This 5K run/walk helps put appendix cancer on the map and hopefully, we’ll educate a couple of people and physicians in the process.”
The One in a Million 5K Run/Walk is open to people of all ages. It offers virtual participation, as well as an in-person, lace-it-up, event on September 14 at Lady Bird Johnson Park, 10700 Nacogdoches Rd., SATX 78217. Awards will be given in a variety of age categories and a 1-mile funwalk is open to those waiting a shorter distance. Registration opens at 7:30am with a Runner Welcome at 8:30a and race start at 9:00 am. Participants can also register online here: https://bit.ly/One-in-a-Million-5K-RaceWalk-2024 – Early Bird Registration of $40 guarantees a race shirt, but that pricing expires August 14 at midnight. Sponsorships are also available from $150 up and most include free and discounted entries: https://bit.ly/Be-a-One-in-a-Million-5K-Sponsor.
The One in a Million 5K Run/Walk is sponsored by: PMP Pals, LMNT hydration drink, SPORTea, Soler’s Sports, Culligan Water of San Antonio, Pearls of Wisdom G’s, Association of Insurance Management (AIM), The Henley Family, Stone Oak Shuttle, and individuals worldwide. with packet pick-up on September 12, 4-7pm at La Tea Da, 434 N Loop 1604 W, Ste 1101, SATX. Those needing more information on the One in a Million 5K Run/Walk, sponsorships, registration, or volunteering, email Sheri Doss sheridoss@pmppals.net.
WHO IS PMP PALS? PMP Pals is a global network of patients and care partners living beyond an Appendix Cancer diagnosis, and its related conditions like Pseudomyxoma peritonei (PMP) which affect the gastrointestinal system, digestion, and nutrition. Founded in 1998, PMP Pals was created when Gabriella Graham, diagnosed with low-grade appendiceal mucinous neoplasm (LAMN), needed answers. She created PMP Pals to fill the gap in public information, physician knowledge, patient resources, and community connections needed. PMP Pals provides peer support that helps Pals go the distance with this rare disease. You gotta dig deep by building the emotional resilience needed to manage the physical side effects of surgery and treatment and the mental impact of possible recurrence. PMP Pals provides HOPE to over 1200 people worldwide through its programs in card-writing packages; warm, cuddly blankets for extended hospital stays; HOPE bears of care and inspiration; 1-1 mentoring; and twice-weekly Zoom calls online. For more information, visit www.pmppals.net.
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Meet Up’24: Cool Things to Check Out in Scottsdale, AZ
In our search for cool things to do in Scottsdale, we’re fast realizing we need more time in The Grand Canyon State. In our idea grab from Top 10 Things to Do in Scottsdale, 25 Best Things to Do in Scottsdale. and 10 Free Things to Do in Scottsdale. We’ve pulled a few of our favorites:
9. Old Town Scottsdale Parada del Sol Rodeo Museum
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- Museum is open Thursday, Friday Saturday 11 a.m. – 3 p.m.
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- Make a donation on your way through to keep this small business kickin’.
- The museum boasts rodeo artifacts going back to the 1950s, including saddles ridden by famous rodeo champions like Jake Barnes.
- Art officiandos will appreciate original Parada Del Sol posters of artwork by Kenneth M. Freeman.
- Trip Tip #1: Email to make sure they are open or to book a private group: info@scottsdalerodeomuseum.com
- Trip Tip #2: Wear your PMP Pals gear and get your photo taken on the bull.
8. Scottsdale Museum of Contemporary Art
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- 18 years and younger (with valid ID) FREE
- Museum is closed Monday and Tuesday. Hours are 11 a.m. – 5 p.m. Entry is by timed-reservation; Groups of 7 or more must pre-register online; purchase your ticket here.
- Admission (Non-members): $13 online, $16 walk-up; Students, seniors (65+), veterans, active duty-military, and teachers: $10 online, $13 walk-up
- Current exhibitions include Brains and Beauty: At the Intersection of Art and Neuroscience and poetics of dissonance
- Trip Tip #1: Pay-what-you-wish all day every Thursday and the museum is open until 7 p.m.
- Trip Tip #2: The James Turrell’s magical “Knight Rise” installation is always free!
7. Slide Rock State Park
Arizona has 33 state parks and numerous hiking trails to visit; waterfalls, desert treks, and hardy wildlife await you! One Pal suggest you swing through Slide Rock State Park which promises great viewscapes and a swimming hole!
- Park Hours are 8 a.m. – 6 p.m., with park entry and swim area closing at 5 p.m.
- Park entry fee is $20 per vehicle (1-4 adults), $5 for additional adults
- Trip Tip #1: No walk-ins; admission is by vehicle only through the entry station. Reservations are not available. Park entry is first-come, first-served.
- Trip Tip #2: Pay fast with Visa or MasterCard. Cash users must have exact change.
6. Scottsdale ArtWalk
The Scottsdale ArtWalk brings together the finest art in Scottsdale including 28 galleries and two museums — Scottsdale Museum of Contemporary Art and Western Spirit: Scottsdale’s Museum of the West. Hosted by the Scottsdale Gallery Association,
Located just 1.5 miles from Embassy Suites, Western Spirit captures the distinct artwork and vibe of The Southwest. From Hopi pottery to bronze sculptures, watercolor landscapes, and Native American jewelry, this museum offers an exhibit for every artistic preference.
- Museum hours are: 9:30 a.m. – 5 p.m. MTWTFS, 11a–5p Sunday.
- Allow approximately two hours to fully enjoy the museum prior to its closing time.
- Trip Tip #1: On exhibit starting October 8, People, Places, Predicaments: John Clymer’s West, features over 50 paintings by John Ford Clymer from the Eddie Basha Collection.
- Trip Tip #2: Order tickets here; pricing is Adult $28, Senior $25, Military $25, Student $12, Child 6-17 $12, Child 5 and under free
4. Frank Lloyd Wright Museum/Taleisin West
Built in 1937, Taleisin West pays homage to the architectural genius of Frank Lloyd Wright and his innovative ideas blending materials, landscape, and innovation.
3. The Grand Canyon & Side Stops
If time permits, you will want to take in the immensity of the Grand Canyon South Rim, closest to Scottsdale.
2. Desert Botanical Garden
This amazing viewscape is just 6 miles from the Embassy Suites Resort. Get your tickets online : adults $32.95
Youth (age 3-17 )$19.95. Indoors, the visitor center features three activities:
- 3370 N Hayden Rd., Scottsdale, AZ 85256
- Majestic Mariposas Sept. 21 –Nov. 11, 2024 | 9:30 a.m.-5 p.m
- Cactus Clubhouse Oct. 3, 2024- May 11, 2025 | 9 a.m. to 3 p.m. Thursdays-Sundays
- LIGHT BLOOM Oct. 12, 2024 – Jan. 20, 2025 | 8 a.m.- 8 p.m.
- Trip Tip #1: Bring an umbrella for mobile shade-sourcing
- Trip Tip #2: If you need an activity for the 18th, check out Music in the Garden.
We too are like butterflies, continuing to evolve into something beautiful after diagnosis. Butterfly Wonderland pays tribute to that metamorphosis. Just 6 miles from the resort (10 minutes by car), this attraction offers a $29.95 anytime flex ticket. A state-of-the-art facility houses a glass atrium providing a tropical rainforest habitat for thousands of free-flying butterflies from around the world.
- 9500 E. Via de Ventura Scottsdale, AZ 85256
- Open seven days a week, 9am-5pm
- No advance reservation required
- Trip Tip #1: Located on the 1st level of AZ Boardwalk, gamers will want to add the Cyber Quest Family Arcade for a 33% DISCOUNT when added to any ticket! Get a $30 game card for only $20.
- Trip Tip #2: Don’t miss the educational “Flight of the Butterflies” 3D movie
For a local detailed list of what’s available through Embassy Suites, visit the blog post Meet Up’24: Scottsdale Offerings here.
Join us for Meet Up’24 on October 18-20. Register. Reserve. Donate.
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