What Does HOPE Look Like?

What Does HOPE Look Like?

We Have HOPE for You group photo

What Does HOPE Look Like?

“We have HOPE for you!” has always been a PMP Pals catchphrase. But, what does that really mean? Here are just a few impact stories from the last year:

For those newly diagnosed.  A new patient and his wife questioned whether it would be worthwhile to go through any treatment at all, given a tough diagnosis. HOPE = taking the leap to start treatment after meeting Pals who are living life fully and having more days to spend together. 

For those who are told there is no hope. One patient came to Pals after being told several times there was no treatment for him.  HOPE = finding a surgeon who saw things differently, after Pals’ tips and encouragement.  Months after his surgery, HOPE = enjoying family events, travel, and a new outlook on life. 

For those with recurrences.  One of the most wrenching experiences is a recurrence after surgery or chemo. HOPE = trying treatment again, inspired by encouragement from Pals with recurrences.

For those with side effects. Pals are known for sharing peer experiences on all kinds of topics you can’t talk about with others: bowel obstructions, digestive problems, anxiety,  and more. HOPE = learning from those who have “been there.” 

For those facing surgery.  Having a rare cancer is lonely enough; heading into the operating room and not being sure what you will (or won’t) come out with amps anxiety. HOPE = having a Pal to talk it through with, someone who really understands life with this bewildering rare cancer. 

For those in their last days.  Though we hope for effective treatment for each patient, we know that some will succumb to this disease. Pals’ phenomenal volunteers are steadfast friends for many patients (and their families) in their last weeks. HOPE = friendship, connection, love, all the way through. 

We Have HOPE for you with select Pal imagesHOPE = all the daily interactions Pals share to encourage, inform, and support each other. Your contribution during our fundraising season will continue to grow HOPE in our community.



Pals in the Kitchen Cookbook 2022 Holiday Edition

Pals in the Kitchen Cookbook 2022 Holiday Edition

Welcome to our first cookbook ever — Pals in the Kitchen Holiday Edition 2022, A Compilation of our Favorite Holiday Recipes.

Pals from all over the globe shared grandma’s secret recipes, family traditional mainstays, and special occasion deliciousness in a gesture of solidarity. We share them here with you to bring you comfort and connection. After all, we have much to be grateful for this holiday season. And we want you to know that you are not alone when faced with an appendix cancer diagnosis…or in the KITCHEN, for that matter!

As Pals, we have each other, and we have HOPE for you! Try out a recipe, snap a photo and post it to our Facebook or Instagram pages with the hashtag #palsinthekitchen.

Click here for the full-color digital version. Be sure to bookmark this page for future reference!

Click here for the printable, black-and-white version with fewer photos.

If you found this cookbook helpful and enjoyable, make a donation to PMP Pals. Ninety percent of our finances support the Programs & Services which, in turn, support people diagnosed with appendix cancer, their caregivers and families, and the medical professional community. We really do a lot with a little, so give generously!


Pals Profile: Advocate, Marathoner, Fundraiser Lindsay B.

Pals Profile: Advocate, Marathoner, Fundraiser Lindsay B.

PMP Pals Lindsay B. celebrates her 40th birthday after a PMP (LAMN) diagnosis, surgery, and treatment. There is life after a cancer diagnosis.In December 2021, 6 months shy of my 40th birthday (and right after completing my 4th TCS NYC Marathon), I heard the three words that nobody ever expects to hear: “You have cancer.”

While in surgery to remove a large, complex ovarian cyst, they discovered a tumor in my appendix and what they thought might be mucin in my abdomen. My appendix, right ovary, and right fallopian tube were removed. Biopsies confirmed the tumor was a rare, stage IV appendix cancer called Low-Grade Appendiceal Mucinous Neoplasm (LAMN).

In March 2022, I underwent cytoreductive surgery (CRS) and a treatment called HIPEC – Hyperthermic Intraperitoneal Chemotherapy – while in surgery, after CRS, they bathed my abdominal cavity with a highly concentrated, heated chemotherapy (42 degrees C/108 degrees F) for 90 minutes. The goal of CRS is to remove all visible tumors; the goal of HIPEC is to remove any tumors remaining on a cellular level. I was in the hospital for a week and left with 52 staples along my abdomen.

Based on my 3-month scan, I showed no evidence of disease (NED), however, there is always a chance of recurrence (especially with LAMN, which is very slow moving) My doctors – Dr. Jeannine Villella DO and surgical oncologist Dr. Marcovalerio Melis MD, both at Lenox Hill in New York – will monitor me with CT scans and bloodwork every 6 months, eventually reducing the frequency for up to 10 years.

The crucial part of my diagnosis was finding the ovarian cyst. I complained for years that my periods were painful and heavy. I noticed they were getting worse and something in my body simply felt “off.”  Doctors continued to suggest oral birth control, IUDs, etc., as a bandaid for this pain. I pushed back, requesting an ultrasound to get to the bottom of it, as I thought it was endometriosis. Moral of the story: listen to your body and advocate for yourself. You know your body best.

Appendix cancer is rare; its companion Pseudomyoxa Peritonei (PMP) occurs when the disease spreads beyond the appendix. Only two people in every one million are diagnosed in the United States annually. Most diagnoses are found at stage IV because it has moved from one organ (the appendix) into another. This is particularly true of LAMN, where peritoneal metastases become more evident. There are not many clear, early symptoms of appendix cancer, aside from maybe acute appendicitis, ovarian cysts, or complicated bowel issues. There are no interventional screenings currently available in its early stages, like a colonoscopy or mammogram to screen for colon or breast cancer. While there has been a lot of progress made recently for treatment and hope for the future, discovering LAMN is sometimes just dumb luck. If diagnosed with appendix cancer or PMP, it is extremely important to see an appendix cancer specialist (pmppals.net has an up-to-date, global, interactive map of specialists).

PMP Pal Lindsay B. enjoying a cocktailThree months after having CRS/HIPEC, I celebrated my 40th birthday! I cannot wait to get back onto the Peloton bike and sign up for my 18th half marathon. My diagnosis is a huge part of my life but does not define me: I am a native New Yorker living on the Upper West Side with my rescue (foster-fail) dog, Charlie. I live for live music and spending time with friends and family. I love to travel and eat my way through new cities! Don’t make me choose between summer and winter – I equally enjoy being on the water and up in the mountains (I don’t ski, but boy the mountains are beautiful, especially with fall foliage!)

I currently work from home full-time in marketing and branding, specifically in new real estate development.. You probably know many projects I’ve worked on if you know the Manhattan skyline, such as One World Trade and Central Park Tower. I always keep an eye out for new challenges and rewarding work. Hence, as an active advocate/fundraiser for cancer research, I currently volunteer with PMP Pals and recently coordinated our first-ever cookbook. (Click here for the digital copy.)

While no one wants to hear, “you have cancer,” my Silver Linings of appendix cancer/PMP are numerous. First, becoming a part of the PMP Pals family has been helpful in my outlook and approach to living with this diagnosis. Second, I am learning to love and appreciate my body because no matter what it looks like on the outside, it is strong enough to endure HIPEC/CRS (it is hard to believe I survived such an invasive surgery). I have a renewed appreciation for my friends and family who really stepped up for me after my diagnosis. At my age, to have both parents by my side during all of this is something I will never take for granted. Family is extremely important to me, as is my faith in Judaism and the traditions we share around the holidays. I even hosted Passover this year, only 1-month post-op!

What’s next? Doctors can’t commit to anything concrete besides being on “watch and wait” with my scans (and monitoring my chemo-induced menopause symptoms), which isn’t easy! However, thanks to PMP Pals, fellow patients and caregivers continue to give me hope, a better understanding of my diagnosis, and an idea of what to expect moving forward.

My interaction with PMP Pals has helped to validate all of my feelings, physical and emotional, and placed me on a positive path to living my best day. I’d be lost without them!  PMP Pals gave me the support I didn’t realize I needed after my diagnosis. They answered questions I didn’t know I had and prepared me for everything going into/coming out of surgery. During the weekly meetings, we discuss topics that my friends and family don’t understand – even friends who have had cancer. It’s different speaking with other ACPMP patients. I’ve made new, genuine friends, which is hard to do at my age! Our relationships may have started because of this rare disease, but these have grown into sincere friendships. I look forward to our calls, especially now, being able to help others – both new and returning members– by sharing my experience and volunteering. It feels good to pay it forward!

PMP Pals volunteer & fundraiser Lindsay B. running the TSC NYC Marathon the week before her diagnosis.If you are new to this journey, I offer these tips:

Find a specialist. Not all doctors are equally educated on appendix cancer. And, meet with as many specialists you need to in order to feel confident with your team and treatment plan. 

Keep coming back to PMP Pals meetings. Ask questions -I guarantee that someone has already asked your question before so please, don’t be shy. 

If you fall under the AYA category (adolescents and young adults with cancer) – I recommend https://anchor.fm/canceroutloud/episodes/Its-a-Marathon-Not-a-Sprint-e1qui5v/a-a8ss3doalso joining an AYA support group, in addition to PMP Pals, to cover different topics (navigating dating, fertility, etc).

Remember: Healing is not linear (exact words from PMP Pal, Linda, while I was in the hospital). Give it time.

Lindsay recently shared your story and her experience on CancerCare’s podcast “Cancer OutLoud.” You can listen here as she talks about accessing CancerCare’s resources including a licensed oncology social worker.