During a recent Hope Zoom call, there was a lively discussion about books that Pals like to recommend. Here’s a list of what we talked about. Most are widely available in both print and digital formats, as well as audio. To build a bigger list, please send your recommendations to firstname.lastname@example.org. You can include videos, articles, movies, or even music you find inspiring. We would love to compile a list of creative works that uplift, motivate, educate, and amuse you!
Every Day I Fight: Making a Difference, Kicking Cancer’s Ass (Stuart Scott & Larry Platt). This is a top pick by popular ESPN sportscaster Stuart Scott. He was diagnosed with appendix cancer at the height of his career and as his daughters were reaching their teen years. Scott’s book is particularly important to Pals because there are so few public figures with this rare cancer whose experience promotes broader understanding and research.
The Mission Walker (Edie Littlefield Sundby). This book is an inspirational/faith-based work, describing the author’s hike of the 1,600-mile Mission Trail through Mexico and California after losing a lung to cancer. This book combines outdoor adventure and internal contemplation for a unique look at what makes life meaningful.
Don’t Give Up, Don’t Ever Give Up: The Inspiration of Jimmy V–One Coach, 11 Minutes, and an Uncommon Look at the Game of Life (Justin Spizman & Robyn F. Spizman). Based on Coach Jim Valvano’s famous 1993 speech at the ESPY awards, this book portrays the courage and hope that sustained his fight against cancer of an unknown origin. Some print versions include a DVD of his speech. Coach Jimmy V is well-known to sports fan but left an even broader impact through his foundation that has raised millions for cancer research.
Proof of Heaven: A Neurosurgeon’s Near-Death Experience & Journey into the Afterlife (Eben Alexander, M.D.). With a self-explanatory title, this book is available free on the Internet. It is based on the physician’s week long coma caused by bacterial meningitis; it explores faith, reality, and consciousness. It’s is available in several languages, evidence of its world-wide appeal.
Gut: The Inside Story of Our Body’s Most Underrated Organ (Giulia Enders, M.D.). This humorous and educational look at your digestive system will give you a better understanding of how your gut works. It also explains the importance of the gut’s microbiome to your physical and emotional health. Incredibly, so little is known about this microscopic world, but the author has hope for future cures as research into this fascinating world accelerates.
Anna’s Journey: How Many Lives Does One Person Get? (Anna Renault) This author was a guest speaker at the PMP Pals’ conference in 2016, a few years before she died. She was a cancer advocate, poet, author, and radio host in the Maryland area. This is one of many books she wrote about her experience surviving numerous cancers. She also wrote works for children experiencing cancer in their families, including Why Did My Dad Get Cancer, helpful for a child/parent conversation. And, her charming “Mitzi the Butterfly” series introduces youngsters to some adult-world topics. Note: Not all of her works are available in audio.
The Last Lecture (Randy Pausch & Jeffrey Zolslow). This book became a sensation when college professor Pausch, dying of cancer, addressed the common theme of advice for graduating students. His book highlights life choices brought into focus when we learn we have less time than we thought we would. “We cannot change the cards we are dealt, just how we play the hand.”
OK, friends, that’s our first list of books. You will find these moving, fascinating, maybe even life-changing. Keep your recommendations coming!
I decided to talk about protein today because because of its importance to healing post surgery and because, well, it’s Thanksgiving. Remember not to rely on my information alone but to discuss your diet with your Doctors, medical providers, and Registered Dietitians that make up your nutritional support team.
The purpose of protein:
The purpose of protein is to make/repair tissues and to perform many other body functions. Proteins can also serve as a source of calories. While healing in the hospital post major GI surgery, like HIPEC, most PMP patients will require twice the amount of protein as usual. Albumin is a circulatory (serum) protein found in blood that is important because it is vital in maintaining the correct osmotic gradient pressure in blood. Blood albumin is also important as it is used to transport various substances in the blood to where they need to go (like drugs, fats, hormones, and more). If you do not obtain the appropriate amount of protein while healing then blood albumin will drop (called hypoalbuminemia- or low blood albumin). Hypoalbuminemia has been shown in literature to correlate with an increase in morbidity and mortality. Chronic protein-energy malnutrition (Kwashiorkor) can cause apathy, diarrhea, inactivity, flaky skin, fatty liver, and edema (swelling from fluid buildup) of the belly and legs, and in children can cause growth failure.
The exceptions (those who should be cautious with protein) are those with kidney failure or certain rare inherited genetic disorders ( ex PKU and maple syrup urine disease- both of which are usually diagnosed when people are very young).
Proteins are made from smaller building blocks called amino acids. There are three categories of amino acids:
researching online I see that now proteins are “graded” on how digestible they are as well. Complete proteins are highly digestible. They actually use this fancy score called the “ProteinDigestibility Corrected Amino Acid Score” or PDCAAS. What a mouth full! The scores range from zero (lowest digestibility) to one (highest digestibility). When people talk of proteins with “high biologic value” they are talking of proteins that are complete proteins with high digestibility. These are the types of proteins encouraged post major GI surgery to maintain optimal serum (blood) protein levels. Because we can have problems with seeds, husks, shell casings, and grains because of fiber, this means the “safe” high biologic value proteins post surgery are basically meats, fish, dairy, eggs, poultry, and soy. However, see the post I put up labeled “Your Post PMP Surgery Diet” because even some of these “safe” proteins should be regarded with caution (depends on your remaining bowel anatomy and any post surgery GI issues). While in the hospital I always ask to speak to the hospital Dietitian because there are some liquid protein supplements that can be added to your diet to boost your oral protein intake.
Hopefully, this helps you understand the importance of getting adequate amounts of the right protein after HIPEC surgery. As always, be sure to work with your healthcare professionals to develop a dietary plan that makes sense for your particular case. If you ever have other questions for me, send me an email at email@example.com, and I’ll be happy to get back to you right away.
PMP Pals has hope for you!
When you get home after major gastrointestinal surgery you will overall do better if you make most of your fluid intake from what’s considered an ‘isotonic’ fluid source.
The ‘tonicity’ of your fluid effects how well it is absorbed. You can wiki both hypotonic fluid (water) and hypertonic fluid (sugar drinks, juice, etc) if you want more detail. The hypertonic drinks are a very bad idea immediately post bowel removal. I recommend you visit the University of Virginia Digestive Health Center’s online recipe for “Homemade Oral Rehydration Solutions.”
Also, if you have SBS (short bowel syndrome), it is recommended that you avoid alcohol, caffeine, and sorbitol containing medications. Sorry to be a killjoy. The good news is that your bowel can adapt to make up for your absorption problems for up to two years post surgery and your diet options can increase with this adaptation.
Be patient as things do get better with time. You can do it!!!
– Linda King
After any major gastrointestinal surgery, you need to ensure you get sufficient calories and nutrients once your bowels are functioning again, but you’ll have new concerns with your modified digestive tract. You’ll want to be careful about what you eat, especially in the early weeks, and make sure you don’t cause yourself a blockage, which is caused by food getting stuck in your intestines. Here’s some things to consider about what to eat and what not to eat after HIPEC or any surgery for PMP.
Breads, cereals, and grains
Eat with caution:
Please keep in mind this is post op only. You can try adding some of the things listed in the avoid column as tolerated as you recover your bowel function. However, do so slowly, in small amounts, and only try one new thing at a time. Chew well and eat small portions slowly.
Vegetables just don’t pack the caloric punch that you need and they contain troublesome fiber which can make you feel full, which can cause you to eat less, and may contribute to clogging. I recommend eating your vegetables last.
Meat, fish, poultry, and protein
All meats, fish, and poultry should be very tender and without gristle
Proceed with caution:
Both beef and chicken have shown to exhibit delayed gastric emptying
Dairy: Milk and Cheese
Start slowly with Dairy at first. Try small to medium amounts and only proceed if they don’t cause you problems. Dairy can cause gas which is my biggest issue with it. I recommend starting with the more solid forms of dairy as they will move more slowly through you. Start with cheese and yogurt (without active live cultures). Then if those are ok try puddings and cream based casseroles. I just flat out can’t do cottage cheese but you can try it. Cream soups are touch and go- the more milk in it typically the worse I do with it. I can’t do milk either- causes me too fast transit and thus pain/ cramping abdominal pain. However, if you can do it, it’s great nutritionally. Great source of calories, carbohydrates, protein, and fat. Ice cream I love but I pay for it afterwards in bloating and crampy abdominal pain.
Fruit, sugar, juice, and desserts
Because these contain simple carbohydrates. Proceed with caution. Start with small amounts and see how you do with them
I would avoid everything else until your gut recovers a bit and then you can try:
The other stuff
Ok. Well that’s probably enough for now. Although, I’m sure as soon as I stop writing, I’ll think of one more thing I should have told you…
PMP Pals is always amazed at how families support PMP patients in their time of need, and how they often remain engaged in our tight-knit community. This blog explores the exciting work being done by some of those people, like the Microbiome Team determining the role bacteria plays in the development of PMP, and how antibiotics might play a role in its treatment.
This story begins in 2003 when Professor Thomas McAvoy’s wife Jesse was diagnosed with PMP. Their search for the right diagnosis and treatment eventually brought them to Dr. Armando Sardi, who has treated PMP since 1994, and Dr. Andre Dubois, who did research on infectious and gastrointestinal diseases. Thus began the formation of a team testing a hunch that bacteria play a role in PMP.
Through Dr. McAvoy’s persistence the team has grown to include Microbiologists Dr. Traci Testerman and Dr. Scott Merrell, as well as Biologist (and PMP patient caregiver) Dr. Jessica Metcalf. PMP Pals has been proud to partner with the ACPMP Research Foundation and engage Dr. Laura Lambert, Dr. Edward Levine and others in our clinical community to advance this research.
Although Jesse McAvoy succumbed to PMP in 2004, we’re grateful for the work the Microbiome Team continues to deliver, and the potential advancement it offers for the treatment of PMP. To read more about the humble beginnings of this research and the McAvoys’ journey, we encourage you to read Jesse’s Miracle, which you can purchase here: www.pmpcure.org/product/jessies-miracle-book.
Bacterial Involvement in Pseudomyxoma Peritonei
by Dr. Thomas McAvoy
Starting in 2004 Dr. Armando Sardi, Dr. Andre Dubois, and I began collaborative research on my hypothesis that bacteria might be involved in PMP. This research has resulted in several papers 1-4, and is ongoing. This article summarizes key results of our research. Paper1 was published in 2008 and it is dedicated to my wife, Jessie, who passed away from PMP in 2004. In paper1 we noted that H. pylori, a bacterium that can cause stomach cancer and other bacteria were found in PMP tumors. We hypothesized that pre- and post-operative antibiotic treatment may enhance the efficacy of cytoreductive surgery with HIPEC. A single blind study was initiated in 2007 to explore antibiotic co-treatment. The study continued until 2009, at which time the IRB raised questions about why we were not conducting a double blind study with ½ of patients given a placebo. Due to the difficulty of setting up such a study it was decided not to resubmit a revised protocol. Our antibiotic pilot project was stopped after 21 patients had been treated, but it was reactivated by Dr. Sardi in February, 2015.
In 2009 Doctor Dubois and his lab director, Dr. Semino Mora, expanded our research to study the β-catenin protein. Normally β-catenin resides in cell membranes and it helps cells adhere to one another. When β-catenin migrates inside cells it is easier for cells to metastasize, and increased levels of intracellular β-catenin are an indicator of cancer. The β-catenin study compared 14 antibiotic treated patients to 34 not receiving antibiotics, and it also included a comparison of bacterial densities in tumors from these two groups2. Bacteria, including H. pylori, were detected in 83% of PMP tumors. PMCA patients treated with antibiotics had a significantly lower bacterial density and decreased β-catenin levels inside cells. Conversely, there was a non-significant effect of antibiotics in DPAM patients. Cell membrane β-catenin was significantly increased in both DPAM and PMCA patients receiving antibiotics. This last result indicated that the tendency for metastasis was decreased in the antibiotic patients.
In another paper3 we gave very preliminary, but statistically non-significant results that patient survival in lymph node negative patients, who constitute over ½ of PMP patients, appears to be enhanced when antibiotics are given pre- and post-operatively. In lymph node positive patients disease has metastasized. En masse, our data suggest that in addition to cytoreductive surgery with HIPEC, antibiotic treatment of lymph node negative patients may affect the carcinogenic pathway indicated by β-catenin and may serve as a novel co-treatment of PMP. We have also studied the microbiome of PMP patients3, been able to culture bacteria from tumors4, and are initiating a study through the American Gut Project to assess any differences between the gut microbiomes of PMP patients and those of healthy people. Through our research the link between bacteria and PMP has been established, but whether bacteria cause the disease or take advantage of it, and pre- and post-operative antibiotics help have not yet been determined.
When people learn I survived cancer of the appendix, they often ask if I just needed an appendectomy.
Unfortunately, the vast majority of appendiceal malignancies are discovered as stage 4, when it’s called pseudomyxoma peritonei (PMP). Once found, tumors have burst through the appendix and spread to the outsides of various organs within the abdomen, and usually attach to the abdominal lining called the peritoneum. The specialists that treat our disease say it’s as if a bag of miniature peas has spilled within the abdominal cavity.
Once any surgeon sees such extensive disease, they know something is seriously wrong, but usually don’t know what they’re dealing with. Unfortunately, many patients with PMP go misdiagnosed by clinicians who aren’t trained to treat this rare disease that affects only 2 in a million people every year. Patients are routinely told they have only a year to live, because local pathologists can’t diagnose it, and even if they do, local surgeons don’t know how to treat it.
I was lucky my surgeon had seen one case of PMP earlier in his career, so he knew what he was dealing with. When he operated on me for what he thought was a burst appendix, he found my omentum studded with tumors (did you even know you have an omentum?), and he found a cancerous phlegmon surrounding my enlarged appendix. Because he recognized the disease, he conducted a right hemicolectomy, which means he removed the appendix and one foot of large intestine. This is just the beginning of treatment.
Once the source of the cancer is removed, specialists must then remove the tumors that have spread throughout the abdomen. Luckily, most cases of PMP are contained within the abdominal cavity. Although the tumors spread within that compartment, they typically don’t move outside of it. For patients reading this now whose PMP has spread outside their abdominal cavity, please don’t fear and read on, because we know patients who’ve had extensive disease and have gone on to be cured.
The specialists will take 10 to 15 hours to remove the PMP through cytoreductive surgery plus hyperthermic intraoperative chemotherapy (CRS+HIPEC). This is the standard of care for treating PMP. In plain English, this means these dedicated surgeons will take as much time as necessary to remove all the tumors, and then fill your abdomen with hot chemotherapy, which they circulate for one hour. This is serious stuff. Patients sometimes refer to it as the MOAS: the Mother of all Surgeries. If you need a specialist to treat your PMP, then visit PMP Pals for resources. Be sure to seek a specialist, because the literature tells us it is important to get care at a hospital that does many HIPEC procedures a year, with a surgeon that’s already done 130-140 HIPEC procedures.
If you have a low grade tumor, you might be done with your treatment. If you have high grade tumor, you’ll probably be doing intravenous chemotherapy, too. You’ll likely go through FOLFOX or FOLFIRI chemotherapy protocols for six months to one year. You can go here for more information on the chemotherapies you might take, their side effects and how you might reduce those side effects.
To see one patient’s recent journey through HIPEC, check out this fascinating article by STAT, an online health publication of the Boston Globe.
So, unfortunately… no, an appendectomy wasn’t the cure for my appendix cancer. But if you really want, I’ll be happy to show you my scar.
Approaching the Christmas season of 2004 I was at the top of the world with a new job at a pharmaceutical company, attending a top-tier business school, and my wife was pregnant with our first child. On Christmas Eve I learned I was also a cancer patient with advanced PMP.
I was lucky my local surgeon had seen one case of PMP before in his career and mentioned HIPEC as a treatment option. I was also blessed my father found PMP Pals on the internet. I traveled to some of the best health care facilities across the US and, like many PMP patients, was told I had a year to live.
I then visited the HIPEC specialists, chose Dr. Sardi as my surgeon and began my year-long treatment that included chemotherapy, cytoreductive surgery and HIPEC. Ten years later I remain free of disease. My body is changed from the surgery, and some days are difficult, but I’m grateful for the days I’m given.
During my recovery I had the pleasure to become friends with Gabriella Graham, the founder of PMP Pals, as I lived nearby. I was a caregiver and a confidant but most importantly a friend. I’m grateful my family got to know Gabriella who was always a lady, no matter how difficult her circumstances.
Gabriella’s journey was different than mine: She was never free of disease and knew she never would be. But Gabriella made a conscious decision to focus on her blessings and be grateful for her portion, rather than focusing on her plight. Gabriella dedicated her life to helping PMP patients with a message of hope, tirelessly supporting them to the very end.
The point of this story is, no matter what your circumstances are, you need to know there’s hope. Maybe you’re afraid because you’re watching and waiting; please understand that although this is difficult emotionally, it may be the best thing to do. Perhaps you’re depressed because you’ve had a recurrence; don’t be, because we know patients who’ve had many HIPEC surgeries before finally becoming free of disease. Maybe you’re disheartened because you can’t find a surgeon to help; be encouraged, because we know patients who have been turned down by specialists but accepted by others.
The truth is, even if you’ll never be free of disease, there is reason to be hopeful. Regardless of your circumstances or the challenges of your disease, you can do great things in this world, just like Gabriella and other PMP Pals. I’m grateful to have the opportunity to lead an organization dedicated to giving you help and support while you navigate life with PMP.
If you want encouragement and support, visit the PMP Pals website at pmppals.net. It would be our pleasure to put you in touch with someone in similar circumstances. PMP Pals has HOPE for YOU.
Cancer patients often report that they have “scanxiety”: significant feelings of anxiety before, during or after getting a CT scan or a blood result that monitors their cancer. Patients understandably monitor their CEA counts to the decimal point, and worry if the numbers go up. Patients will also read their reports and wonder what every ambiguous word might be hiding. We know, because we did the same thing ourselves as we went through our treatment.
Over the years we’ve seen this a lot, especially for patients going through the “watch and wait” strategy. Watch and wait can be an excellent strategy depending upon your circumstances and your goals, but it’s rife with worry. The thing is, patients who have chosen this strategy are going through one of the worst parts of the emotional battle, if not the worst. They’re trying to enjoy their days as best they can, yet they’re terrified by the numbers. This is extremely common and completely understandable, and we don’t know of anyone who doesn’t worry about their numbers.
The truth is, though, in relative terms, numbers usually aren’t changing that much. Typical CEA results may go from 31 to 37 to 45. Yes, they’re going up, but they’re relatively stable. We don’t expect that to be much solace and we’re not trying to suggest patients shouldn’t worry. We are trying to bring awareness to the fact that we torture ourselves while we go through these periods of scanxiety. We’re so terrified about the future that we can’t live in the present. So what’s a patient to do while going through this?
This is where the spiritual discussion starts.
This turmoil is being experienced on the emotional level, and so what we find truly helps are spiritual remedies that aid the patient with self soothing. We find patients who consciously set aside time daily to practice these self-loving activities get the best results. Some of the things we’ve seen be most successful:
All of these physical activities teach us how to connect with and soothe our emotional instincts, and to calm our lizard brain fight or flight reactions.
Many of our greatest cancer fighting institutions are now incorporating holistic therapies like these to complement their conventional clinical treatments. Most of these programs are free of charge for cancer patients and the caregivers fighting with them. By the way caregivers, don’t forget that you’re fighting your own emotional battle, and need to make for yourselves, too. Make sure you’re re-charging your batteries so you can be your best for the patient you’re supporting.
PMP Pals also firmly believes time spent with a licensed therapist is an integral part of treatment for PMP, since the treatment can be so invasive, recovery can be long and the journey is always filled with tests. We tend to see patients suffer from symptoms similar to PTSD, regardless of whether they become free of disease or not (and we know of hundreds of patients who are now free of disease after treatment for appendix cancer and pseudomyxoma peritonei). We also see patients benefit from treatments typically used for patients suffering from PTSD.
Finally, PMP Pals finds informed patients who have a solid clinical team fare better than patients less well informed. That’s why we have a Find A Surgeon map for easy searching, and why we pair patients with Mentors who have been through this journey before.
So, in the end, we expect the tests to continue. We just hope you’ll consider making time to practice some of these techniques to give yourself some relief, and do your best to enjoy the blessing that is today.
Spoiler alert: Not every journey ends with a happy ending. If you’re at the beginning of your journey, consider reading this article later. Many caregivers will benefit from reading this article. No matter where you are in your journey, PMP Pals has hope for you.
This blog entry was originally written in August 2013 by Therese Surges.
My husband, Keith, was diagnosed with Appendix Cancer, mucinous adenocarcinoma and peritoneal carcinomatosis in October 2010.
Like many reading this, we were shocked that there was such a thing as appendix cancer. While we loved our local oncologist and his treatment consisted of treating this as it were colon cancer* he was very gracious in sending us for further opinion and not at all intimidated that he really had no clue about pseudomyxoma peritonei.
Long story short, it was through internet research that we learned this cancer is “rare” – “one in a million” “incurable” and further reading brought us information about cytoreduction and HIPEC, a possible chance at a cure and if not a cure, an extension of life. As a caregiver, I have found my role to be almost as imperative as the patient because often times the patient is so stunned by the prognosis that they can’t think straight. Don’t get me wrong; when we first found out about Keith, there was a period of about six weeks in which I was barely functioning. I didn’t want to lose him. He was 55 years old and we had a lot of living left to do. But I took the role of information guru – I learned the lingo, the drugs, the surgery and I put into layman’s terms the best I could so that Keith could understand and make informed decisions. We traveled the same road as all of you reading this – with hope and with purpose. After Keith underwent six months of chemo with none of them helping to shrink or even keep the tumors at bay, he went to a Surgical Specialist. There was some concern that his name wasn’t on the “list” of surgeons but once we met him and he told us he had been doing the surgery for over 8 years, though scared, he put Keith’s mind (and mine) at ease by explaining the disease in detail, how most of patients have done post op and what statistics were (for him). Keith had cytoreduction and HIPEC on July 1, 2011. His surgical score was a “1” which meant though there was some millimeter tumor on the small intestine; the hope was that HIPEC would eradicate those tumors.
It was not to be. Within 3 months the cancer had returned. Keith began different targeted therapy regimes to no avail. By the six month it was determined that chemo should be stopped as it had no benefit other than to weaken him.
As a caregiver, I watch him closely. I live life with him. I hold on to what has been given to him; an extension of life and an amazingly good extension! I am here to hold his hand, give him his meals, tell him how proud I am of him, love him and thank God for him every single day. This man, who has cancer throughout his peritoneum and pelvis again, extensive tumor on and between small intestine, liver, diaphragm, etc., never complains. He goes about his daily routine without worrying too much about tomorrow because we are living for today. We know that statistically things may change at any time but we do our best not to let that stop what today has given us. Today has given us an opportunity to make new memories, even if those memories are just sitting together in our family room looking at the TV or sitting behind our computer screens.
As his caregiver, as his wife, it is my responsibility to make sure that he has the best care possible and I will continue to give my all to him. It is also my faith that sees me through the troubling times – we are all here on this plane for such a short while. I will make these days the best days possible.
*Local oncologists will tell you this cancer is treated like colon cancer. We have never been hung up on that verbiage because in all honesty, there is no known protocol for appendix cancer and pseudomyxoma peritonei other than cytoreduction and HIPEC or EPIC or a combination thereof. There are no chemo drugs specific to appendix cancer, but the ones used for colon cancer do appear to help some patients and that is why I believe these doctors say they will treat it like colon cancer. Treat it = chemo.
Update to this writing: Keith lost his battle in December of 2014, after spending an amazing 11 months with hospice services in our home. It was, and will always be, our story of love, survival and hope. I continue to have hope for others and believe that research will lead us to better treatments and surgical technique is being perfected every day. I am grateful to organizations like PMP Pals, who provide information for those newly diagnosed to get the right treatment at diagnosis.