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The Importance of Protein After HIPEC

Posted by on 1:18 pm in After surgery, Caregiver Information, diet, Eat Like A King | Comments Off on The Importance of Protein After HIPEC

protein after surgery

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:

  1. Essential amino acids.  There are 9 essential amino acids that humans must obtain by eating food.  Foods that contain all 9 essential amino acids are called complete proteins.  These foods include dairy, eggs, meat, poultry, fish, soy, and some other plant based proteins (wiki “complete protein”).  A lot has changed since I practiced as an RD (Registered Dietitian).  On
    Linda King writes about diet and nutrition for PMP patients in her regular column Eat Like a King

    Linda King writes about diet and nutrition for PMP patients in her regular column Eat Like a King

    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.

  2. Non essential amino acids.  These are amino acids that your body can produce on its own, even if you don’t get them in the food you eat.
  3. Conditional amino acids.  These are amino acids that are usually not essential, except in times of illness or stress.  These include arginine, cysteine, glutamine, tyrosine, glycine, ornithine, proline, and serine.  The reason I bring these up is because there is debate about adding these to your diet while healing.  These are found in a lot of supplemental protein powders like you see athletes use.  Talk to the Dietitian to see if any of these would be beneficial to you. The most common one I see supplemented  for GI surgery patients is with Glutamine.

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 eatlikeaking@pmppals.net, and I’ll be happy to get back to you right away.

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PMP Pals has hope for you!

What To Drink After Surgery

Posted by on 9:36 pm in After surgery, Caregiver Information, diet, Eat Like A King, Life after PMP | Comments Off on What To Drink After Surgery

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

diet after surgery

Your Post PMP Surgery Diet

Posted by on 11:04 pm in After surgery, Caregiver Information, diet, Eat Like A King, Life after PMP, Nausea | Comments Off on Your Post PMP Surgery Diet

diet after surgeryAfter 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:

  • White breads, waffles, french toast, plain white rolls, or white bread toast
  • Pretzels, plain pasta or noodles, white rice
  • Crackers, Zwieback, melba, and matzah (no cracked wheat or whole grains)
  • Cereals without whole grains, added fiber, seeds, raisins, or other dried fruit
  • Use white flour.

Eat with caution:

  • Grains, such as cream of wheat. If you eat them make sure they are well cooked and watered down. I tend to avoid them because they act like cement to me.

Avoid:

  • Brown or wild rice, whole grains, cracked grains, or whole wheat products
  • Kasha (buckwheat)
  • Cornbread or corn meal
  • Graham crackers
  • bran
  • wheat germ
  • nuts
  • granola
  • coconut
  • seeds

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

Eat:

  • Tender, very, very well cooked fresh vegetables or canned vegetables without seeds, stems, or skins.

Avoid:

  • Everything else until you get your calorie count up with the above breads, cereals, and grains and the below listed proteins and dairy as tolerated. I avoid potatoes because even the mashed potatoes seem to clog me which is too bad because they are one of the only vegetables with a decent amount of calories per serving.

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

Eat:

  • Pork
  • hamburger and other ground meats
  • fish

Proceed with caution:

  • Eggs . I eat some but they tend to clog me if I eat too much,
  • Smooth Peanut Butter. Again, I eat some but too much acts like cement and clogs me
  • Sausage. You should not eat anything with a casing. Without a casing you can try in small amounts. Because it is high in fat I don’t tolerate it right after surgery ( wiki Steatorrhea)
  • Shellfish. It’s many times chewy and so can be difficult to chew enough for it not to cause you a problem
  • Tofu. I just can’t do it. Causes me to be clogged. You can try it and see.
  • Dark meat chicken. Dark meat chicken is higher in fat and more tender and I can do small amounts of it but be careful. Chicken is a meat that moves more slowly through you and thus is more prone for clogging
  • Jerky. I can do jerky fairly well. Even beef jerky. This item is from my own personal experience. I have seen nothing in the literature that tells me why I can do Jerky but not regular beef. Thank goodness because it is a main protein calorie source for me even today, over 2 years after my last surgery.
  • Bacon. Make sure it is crispy and only eat small amounts at first. It is high fat so can cause some GI distress post surgery (again wiki steatorrhea)

Avoid:

  • Beef besides listed above. Even tender cuts are problematic for me.
  • White meat chicken

Both beef and chicken have shown to exhibit delayed gastric emptying

  • beans, nuts, peas, lentils, and legumes. At least post op do this. You can add these back to your diet slowly as your bowel adapts. I can do some of all these now but it took me some time.

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

Try:

  • Soft, canned, small amounts of fruit.
  • Applesauce
  • Solid desserts with sugar like cookies and cake without frosting

I would avoid everything else until your gut recovers a bit and then you can try:

  • Dried fruits, prunes, and raisins. If you eat them only eat a tiny amount
  • Berries. Berries with fewer seeds are better than with more seeds. Again- tiny amounts only
  • Fresh fruit- be cautious. The high fiber content tends to give us problems. I really just can’t do fresh fruit even now
Linda King writes about diet and nutrition for PMP patients in her regular column Eat Like a King

Linda King writes about diet and nutrition for PMP patients in her regular column Eat Like a King

Avoid:

  • Fruit juice. Too much simple sugar at once. You can refer to my post about carbohydrates.
  • Liquid sugar drinks and liquid sugar desserts for the same reason. Too high in simple carbohydrates

The other stuff

  • Butter or margarine as tolerated
  • condiments are usually ok but I would avoid tabasco or spicy/hot sauce after surgery until your gut recovers
  • Chocolate with caution. I love chocolate but it acts as a bit of a laxative. Sometimes I actually use it to make things move through me but I would not experiment solid chocolate until your gut recovers a bit. The chocolate flavored hospital drinks do not count in this category. They should not have enough chocolate to cause this effect.
  • avoid popcorn
  • avoid potato chips. I tolerate corn chips ok but potato chips are risky. Clog central.

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…

Bacterial Involvement in Pseudomyxoma Peritonei?

Posted by on 10:06 am in Causes | Comments Off on Bacterial Involvement in Pseudomyxoma Peritonei?

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

bacteria cancerStarting 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.

References:

  1. Semino-Mora, C., et al, Ann Surg Oncol 2008 15, 1414-23, 2008. p. 197.
  2. Semino-Mora C, et al, Clin Cancer Res. 2013 Jul 15;19(14):3966-76.
  3. Gilbreath J, et al, Orphanet J Rare Dis. 2013 Jul 12;8:105.
  4. Lo A, et al, genome A. in press 2015.

No, an Appendectomy Won’t Cure Pseudomyxoma Peritonei

Posted by on 1:02 pm in Caregiver Information, Life after PMP, Surgeons | Comments Off on No, an Appendectomy Won’t Cure Pseudomyxoma Peritonei

As seen on

the mighty

When people learn I survived cancer of the appendix, they often ask if I just needed an appendectomy.

If only.

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.

GET IT ALL OUT border removed

The key to a successful HIPEC is for a skilled surgeon to remove all of the tumors before administering heated chemotherapy during surgery

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.

The Mighty Posts Our Story of Hope

Posted by on 3:27 pm in After surgery, Caregiver Information, Life after PMP, Testimonials, Uncategorized | Comments Off on The Mighty Posts Our Story of Hope

As seen on

the mighty

Piekarskis in Waikiki Oct-2014

Chris and his wife Sherry, with daughters Katie and Julia (who was conceived after his HIPEC)

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.

Chris and Gabriella_We Believe in Miracles

Chris enjoying life with PMP Pals Founder Gabriella Graham

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.

How Do I Fight Scanxiety?

Posted by on 5:02 am in After surgery, Caregiver Information, Life after PMP | Comments Off on How Do I Fight Scanxiety?

scanxietyHow Do I Fight Scanxiety?

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:

  • Practicing meditation daily
  • Listening to peaceful sounds of the outdoors, surf or thunderstorms
  • Taking time to rub scented oil on your hands and feet (which is often helpful while we fight chemotherapy side effects like hand and foot syndrome)
  • Burning incense

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.

 

The Caregiver Corner: Perspective from a Veteran Caregiver

Posted by on 5:12 pm in After surgery, Caregiver Information, Life after PMP, Mentor Program, Testimonials | Comments Off on The Caregiver Corner: Perspective from a Veteran Caregiver

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.

Therese HeadshotAs 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.

Therese is on the Board of Directors for ACPMP Research Foundation. Therese is also a veteran PMP caregiver who posts great advice daily on the Facebook PMP Appendix Cancer Support Group.

 

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No matter where you are in your journey, PMP Pals has hope for you

Ask Arthur continues the conversation: What to Expect after HIPEC

Posted by on 7:17 am in After surgery, Life after PMP | Comments Off on Ask Arthur continues the conversation: What to Expect after HIPEC

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Retired pediatric surgeon and PMP patient Arthur Rettig answers your questions about Appendix Cancer and Pseudomyxoma Peritonei at PMP Pals Ask Arthur

What should I expect after CRS surgery with HIPEC?

If you receive a diagnosis of cancer of the appendix with or without pmp then you might undergo a procedure which is known as cryo-reductive surgery or CRS. This involves a thorough exploration of your abdomen for removal of tumor, mucin, intestine or solid organs such as your spleen or gall bladder. HIPEC may be recommended as an adjunct to the CRS. HIPEC involves perfusion of your abdomen with chemotherapy dissolved in a solution which is heated to 107 degrees F.

As with any abdominal procedure you can expect to experience post-operative pain. The pain medication you will receive will be unique to the institution where you had your surgery. In the hospital, you will initially have intravenous and/or spinal drugs, but over time you will transition to oral medications. Use your pain medication to make yourself comfortable and to enable you to move and walk with minimal discomfort. Try to use only as much as you need and remember that you want to be able to think clearly and get up and about.

Getting out of bed as soon as you can, walking, and deep breathing help to prevent atelectasis, (collapsing of the lung) as well as pneumonia and blood clots. With walking you can hasten the return of gastro-intestinal function. Generally when you awake from the anesthesia you will have a naso-gastric tube  in one of your nostrils and fed into your stomach. This tube is put into place when you are under anesthesia. This tube helps handle the fluids of your intestinal tract until the return of its peristalsis or movement. With activity you can hasten the return of your bowel function.

This process will be marked by passing gas from your rectum or having liquid stools. Even without eating you can have liquid bowel movements. The timing of the return of bowel function depends on the amount of surgery done during the CRS and most particularly on the degree of intestine removal. When your gastro-intestinal tract starts to work, the naso-gastric tube is removed and you will be started on liquids. As you tolerate the liquids, your diet will be advanced to soft foods.

Walking also helps your circulation (particularly the veins of your legs) and helps to prevent blood clot formation. As well, you will receive blood thinners and special stockings. A pulmonary embolus, or clot to your lung, is serious and life threatening. Thus, I would encourage you to start walking or at least getting out of bed as soon as your physician says you may do so. Start with getting out of bed and sitting in a chair with your legs elevated but not crossed, to avoid clots from forming in your leg veins. When sitting is comfortable for you and with permission of your physician, start walking the halls. Start with assistance and very short excursions. As you feel better, increase both the distance and the number of walks per day. The more walking you do, the sooner you may be discharged.

When you undergo HIPEC you have had chemotherapy. Your abdomen is bathed in large volumes of solution heated to 107 degrees F. Since your abdomen has undergone trauma both from the CRS and from HIPEC, eating is a particularly difficult problem. Your medical team may be encouraging you to eat but you will find it difficult to do so. Initially very small amounts of bland food should be your diet. If you try to eat large quantities of food you might develop abdominal pain located primarily in your upper and mid-abdomen. You may feel as if you need to vomit. A reasonable starting diet, both in the hospital and continued at home, consists of oatmeal, eggs and toast, A light dinner should consist of small amounts of a protein and some steamed vegetables. Small and frequent meals work best. Drink fluids to maintain hydration. If you overeat and feel discomfort (this may also occur even if you are watchful), you must stop eating. Do not lie down flat because after HIPEC your gut does not empty normally and reflux or heartburn is common. Reflux is the movement of fluid from your stomach up to your esophagus, the fluid is going in the wrong direction. As you feel more comfortable, you can add more and varied food to your diet in a gradual manner. With these dietary restrictions, you will inevitably lose weight. While everyone on your medical team will encourage you to eat more and more in order to maintain your weight and to help in the healing process, this is very difficult to do. Expect significant weight loss. A weight loss of at least ten to twenty pounds is common. Each person has to figure out what foods are tolerable. A word of warning:  do not  introduce new foods when you are not near a bathroom facility. Over time, measured in months, you will stabilize and be able to maintain your new baseline weight. It takes a long time to resume eating normally as you did before surgery and to start gaining weight. Weeks to months is the usual time period. If you try to rush to eating larger meals, it might set you back. Even a year or so after surgery, you may find that eating more than your usual intake causes abdominal distress.

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You can send your questions to Arthur at askarthur@pmppals.net

After any operation, weakness and fatigue are also common. However after HIPEC you probably will feel exhausted. Even if you are in good shape from having exercised prior to your surgery you will feel that you cannot do anything physical. You may sleep more than usual. It is important to resume activities but that must be done very slowly. A five minute walk on a flat surface is a good start. Once you feel that this is easy for you, increase the walk to twice a day or ten minutes. Do not try to do more than you comfortably can in an attempt to “get back to normal,” because that is counter productive. With HIPEC and even minimal CRS ,weakness and being easily fatigued is a reality. Do not push yourself too hard. Time is a great healer. How quickly you resume your work is truly dependent on how much CRS has been done. It takes a longer time to recover if intestinal work has been part of your procedure. If complications occur it will take a much longer time for you to return to full activities. Give yourself at least two months before you try to go back to work or resume full responsibilities in your home.

The physical after-effects are also accompanied by psychological effects. You have had an enormous operation. You may feel poorly and cannot fathom that you will ever get back to your “old self”. As well, the reality that you have cancer and that this is now a new life-long problem is a new reality. You may face further surgery or a round of intravenous chemotherapy. Sadness and depression can understandably occur. You must deal with your mental health because it can affect your physical recovery. There is nothing wrong with admitting that these issues exist. It is appropriate and advisable to seek appropriate help/counseling.

As discussed above, the issue of pain management is quite important. When you are discharged from the hospital, you may receive numerous pain medications. I caution you, the more prescription pain medicine you take, the harder it is to get back to your old self. At home the decisions about medication are up to you and you alone. In the hospital the frequency and dose of your pain medications are carefully regulated. These medications can affect your mental status and can contribute to sadness or depression. Moreover, starting on opiates and remaining on them for a lengthy time can lead to addiction. Each of us has a different perception of pain. However, after some two weeks post-op, the level of pain in part should be able to be handled by over- the- counter medicine. If you have significant pain after two to three weeks, consult your physician since other factors might be present to cause this continued level of pain. Remember opiates dull your mind and affect your body’s ability to function. Appropriate use of pain medications is extremely important to a faster recovery.

Please tailor your recovery to what suits you best. This explanation and these guidelines are meant only as suggestions. I hope they are helpful to you. However most of us who have had this surgery would agree with the descriptions of how you might feel after CRS surgery with HIPEC. Recovery from CRS and HIPEC may be difficult, but it is important to strive for a full recovery and a “normal” life. I wish you well.

Arthur

Arthur Rettig is a retired pediatric surgeon and PMP patient himself. Despite his medical background, when first diagnosed with adenocarcinoma of the appendix, he didn’t know where to turn. Arthur was glad to have found PMP Pals on the web.

If you have questions you’d like to ask Arthur, send them to askarthur@pmppals.net. PMP Pals has HOPE for YOU!

 

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Couple Conquers Cancer Using Love and Laughter

Posted by on 12:31 pm in After surgery, Life after PMP | Comments Off on Couple Conquers Cancer Using Love and Laughter

couple-laughingWe asked our PMP Pal Couples to share their “tips” for coping with the strain that cancer can place on a marriage. “Pals” Brian and Linda came forward to share their suggestions with us.  About this couple:

Brian, the “PMP Pal” patient and Linda, his wife, have celebrated their fiftieth wedding anniversary! Their marriage has been punctuated by a series of challenges to Brian’s health, including the diagnosis and ongoing treatment for Pseudomyxoma Peritonei.

In today’s, article, Linda shares their “secret” of combining love and laughter, as coping tools in their arsenal against cance.

I speak from the role of the caregiver. After over 50 years of marriage to my husband, the patient, I feel I can speak fairly confidently for him. During more than half of our married life, we’ve faced medical challenges that could have brought us to the brink of utter despair. My husband has had five brain tumor surgeries for a persistent meningioma and two operations for Pseudomyxoma Peritonei.

Perhaps the most difficult time through all of these events was the clinical depression that followed my husband’s second brain tumor surgery in 1997. My usual easy going, positive outlook mate became an entirely different person. It was as if a complete stranger was living in my house, or some alien being had taken over his body. I don’t know what we would have done without our close family and our church family that simply surrounded us with love and support.

The medical “experts” have all told us that my husband is somewhat of a miracle in regards to his survival of cancer. I think that “miracle” is comprised of love, support and the excellent surgeons and medical care he has received along the way.

There is one more factor in his survival, and that is the outlook we choose to have; somehow through all of this, we haven’t lost our sense of humor.  Mark Twain said: “Against the assault of laughter, nothing can stand.”

There just may be some people who are predisposed to humor and staying upbeat, and that is a saving grace. Maybe those people have not truly faced difficult situations in their lives. Perhaps however, they have, and rather than letting those situations pull them down, they choose to find ways to move forward through the pain and look for the opportunities that can arise from the challenges they face.

In 2007 when my husband’s surgeon told me that Brian has Pseudomyxoma Peritonei, I remember thinking “OK God, what is this new challenge we have to face now?”

We faced it and worked through it by still finding humor in the little things. Abraham Lincoln said “With the fearful strain that is on me night and day, if I did not laugh I would surely die.”

When my husband and I were at M.D. Anderson in Houston for a checkup following his second surgery for Pseudomyxoma Peritonei, we had some free time. We discovered a “Laughter Yoga” session that was open for patients and their families. We had absolutely no idea what this class was about, but being our usual open minded and adventurist selves, we decided to go.

We enjoyed an invigorating hour doing something completely crazy and fun. While we were laughing in this classroom with 20 complete strangers, I realized that my mood lifted exponentially, and I was thinking about nothing but laughing and the fun I was having!

Humor and laughter have always come fairly easily for both my husband and me. During our most challenging times, it has been harder to find that humor, but somehow we’ve managed to pull it out just when we need it the most.

Now, back at home in our own city, I have become a Laughter Yoga instructor, and have added this new vocation to my existing real estate career. I enjoy helping others find some time to move away from their troubles for a short period with an hour of laughter!

Faith, hope, love and laughter…these are the things that have brought us through over fifty years of marriage and a long battle with cancer!

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