_ PMP Pal Family Donates $9,400 to PMP Research and Awareness!


When fourteen year old Amos’ father, Rene, was diagnosed with Psuedomyxoma Peritonei, the high school student experienced the concerns felt by any youngster who learns his parent has a rare and challenging disease.

Amos became concerned when he observed the months of uncertainty and lack of knowledge about PMP among local physicians, until his father finally connected with specialist, Dr Viktor Verwaal in Amsterdam.

Amos realized the need to bring awareness about the diagnosis and treatment of PMP to Holland. He set about to create a unique method of raising funds to support Dr Verwaal’s Peritoneal Surface Malignancy research program, while bringing attention to the rare diagnosis of Pseudomyxoma Peritonei.

Having been raised in a family where appreciation and nurturing of is personal musical talents had been encouraged, Amos focused his concerns for his father into creating a CD comprised of his own arrangements of music he composed, as well as standards by the Beatles and Rolling Stones.

Amos attached a label stating “Against PMP!” to his CDs and shipped three dozen copies to the US in support of the PMP Pals’ Network.

He then proceeded to sell his CDs in his native Holland and collected funds to support the research conducted by his father’s surgeon specialist, Dr Victor Verwaal.

Amos is now 15 years old and, his father, Rene, is now more than one year post op from CRS HIPEC. Both Rene, and his wife, Suzanna, have returned to work, while Amos and his older brother, Tobias, continue their studies in higher education.

Last week, Amos and his family, visited Dr Verwaal for one of Rene’s post operative check ups. During that visit, Amos presented Dr Verwaal with a check for nearly 7,200 Euros to benefit research and to expand awareness about the accurate diagnosis and treatment of PMP in Holland!

Amos presented the check to Dr Verwaal during a reception held at the Antoni van Leeuwenhoek Hospital in Amsterdam. During the reception, Amos treated the hospital staff and guests to selections from his musical arrangements.

Amos began composing his own music when he was 12 years old. Sadly, his piano teacher is also a cancer patient now.

Amos and his family provide us with yet another example converting the challenges presented by cancer, into providing hope and encouragement for future patients and their families!

 

For more information about Pseudomyxoma Peritonei, visit www.pmppals.org

For more information about Dr VJ Verwaal and other HIPEC Treatment Specialists, visit www.pmppals.org

 

 

Copyright©2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved.

Visit us on the web at www.pmppals.org

We have HOPE for YOU!

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_ Post-Operative Weight Loss & Canned Supplemental Beverages


Family caregivers and, indeed, patients themselves, are surprised if the patient does not gain weight quickly following GI surgery, even though s/he may be consuming canned liquid "nutritional supplemental beverages."

Patients and their family caregivers may not realize that these canned supplemental beverages may lead to the "Three D's", (diarrhea, dehydration and distress) and may prevent post-operative weight gain.

These symptoms may occur in GI cancer patients who have experienced colon resections, gastrectomies, ileostomies, etc.

Commercial canned beverages generally include high percentages of simple sugars (corn syrup) and milk/lactose sugars (milk solids.) These ingredients contribute to diarrhea in patients who may experience "short gut syndrome" and "dumping syndrome" post operatively.

The consumption of commercially prepared supplemental canned beverages, as well as any sweeteners, simple sugars and lactose products, may actually create conditions of weight loss and malabsorption instead of weight gain.

For more information on post-operative nutrition, refer to “Nutrition” link on www.pmppals.org


For specific recommendations regarding your personal nutritional needs, consult with a licensed dietician/nutritionist or physician. The PMP Pals’ Network does not provide medical advice. Patients must seek the counsel for their own physicians and healthcare professionals.


Copyright © 2012 by Gabriella Graham and the PMP Pals’ Network. This article is copyrighted and may not be reproduced without written permission from the author. Visit us on the web at www.pmppals.org We have HOPE for YOU!

 

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_ Friends Can Help Young Families Affected by Cancer!

Adapted from KidsKonnected.org

 

Do you know a young mom or dad going through cancer treatment?

While the parent/patient may be receiving support from fellow adults, quality time, normally devoted to the children, may be reduced while adults in the family tend to the details of cancer treatment, employment, health insurance, etc.

Can you volunteer one or two hours a week to support the child or children of that parent?

Here are suggestions to help you share your time and “pinch hit” to help care for your friends’ children, during times of need.

When visiting a family affected by cancer…

acknowledge the fact that the child's parent is sick. The child is aware of the parent's sickness. Acknowledgement of this fact allows the child to be able to talk freely about how (s)he is feeling and shows the child that you care about not only the parent, but the child.

Ask the child, "How are you doing"? By asking how the child is doing, you give the child a sense of self-worth.

Be available to help support the family!

Here are suggestions to provide practical support…

Take the children to soccer or softball practice.

Take the children to dinner or a movie; give the parents some quiet time together.

Grocery shop for the family; stock the refrigerator with food that the children can easily prepare for themselves.

Provide for a fun distraction!

Family life is strained when a parent has been diagnosed and is going through treatment. Relief from that stress, even for a brief period of time, can make a big difference to the child's emotional health!

Offer to take the child/children to play dates, sports activities, trips to the library, bike riding, visits to the park, etc.

Be available to just listen!

Dealing with the emotional side is critical and an integral part of what the parent and child is going experiencing. Allow children to express their feelings about their parent’s health, in an environment of love, caring and understanding.

These suggestions were developed by Kids Konnected. Visit kidskonnected.org for more resources to assist children whose parents have been diagnosed with cancer



Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved.

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_ PMP Pals' Network Begins 14th Year of Service: 1998-2011

 

This month marks the beginning of the fourteenth year of service for the PMP Pals' Network!

Our volunteer "grass roots" program serves patients and their families in 49 countries and in more than a dozen languages!

Developed by a cadre of ten dedicated patients and family caregivers in Holland, the United Kingdom and the United States in 1998, our goals have remained consistent and proven to be successful for more than a decade.

Our mission has been to assist patients in obtaining the best possible medical care/treatment for rare cancers/diseases affecting the digestive system,

To provide practical resources and support (financial, health insurance, transportation, etc.)

To provide pre screened, trained and vetted "Pal Mentors" to share helpful suggestions for pre and post treatment recuperation,

To educate the public about our rare disease, treatments for our disease and the need to support research for treatment,

And, in conjunction with our first goal, to interview, vet and publicize responsible healthcare providers who demonstrate expertise in the treatment of our disease.

Of the Founding Members of the PMP Pals' Network, including Pal Family Caregivers Bernard Goldberg, Sara Shatford Layne PhD, Tom Panek and Audrey Ragan, three remain living today, with octogenarian Mr. Panek having passed away due heart disease three years ago.

Of the Founding Members of the PMP Pals' Network, including Pal Patients, Elizabeth Collins, Henry den Hartog PhD, Gabriella Graham, Charlotte Lindon, Edie McCall and Joan Panek, two remain living today, with Mrs. Collins, Dr den Hartog, Mrs. McCall and Mrs. Panek having passed away due to complications from cancer.

Surviving Pal Patients, Mrs. Lindon and Mrs. Graham, share the same diagnosis of metastatic mucinous adenocarcinoma with Pseudomyxoma Peritonei. Neither of these patients have ever been cancer free. Both are veterans of numerous surgeries for palliative care, and remain active participants in the PMP Pals' Network today, in spite of their original poor prognoses. Mrs. Lindon celebrated her 91st birthday two weeks ago!

The PMP Pals' Network is proud to provide patients and their families with the most comprehensive source of practical information regarding Appendiceal Cancer, Pseudomyxoma Peritonei and all Peritoneal Surface Malignancies via www.pmppals.org, a site so popular that it has been copied by other "support groups" and healthcare industry companies.

The "Pals" pride themselves in providing "real time" and face-to-face support and resources for patients and their families. In spite of the rarity of our various diagnoses, we are able to personally match liked minded patients and their families, in a manner that provides true comfort and assistance at a time when it is needed the most.

PMP Pals puts the "CAN DO!" in Cancer!®

We CAN outlive our prognosis!

 

We CAN live well in spite of a challenging and rare diagnosis!

 

We CAN find a cure for our rare disease!

 

Thank you for your participation in the PMP Pals' Network!

 

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved

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_ Holiday Air Travel Tips for Cancer Patients!

Patients may have special needs when traveling through busy airports, especially during the busy holiday season!

Whether you are recuperating from recent surgery, or are lacking the marathon strength stamina often required for current air travel, you and your caregiver (spouse/family member) may consider the following options for requesting “curb to curb” assistance for your next flight!

1. Read the TSA guidelines for disabled passengers as posted on www.pmppals.org

2. Request "curbside" wheelchair service when you make your plane reservation (the airlines do not charge extra for curbside wheelchair service.)

3. When your cab/car service drops you off at the terminal curb, a porter will bring a wheelchair for you to the curb for you.

4. The porter will take you, in the wheelchair, with spouse/friend accompanying you as your caregiver, directly to Security (the porter will push the wheelchair.)

5. You and caregiver will receive priority Security check in.

Priority Security checks in may require taking you aside to a private area for a pat down or bringing you straight through "regular" Security where you may also receive the pat down, in front of the public and be scanned. Advise the TSA attendant if you have an Ostomy, prosthetic, feeding tube or any other medical apparatus. Be prepared to show all carry ons, including those for medical supplies to the security agent. You may also consider bringing a letter or note (written on a prescription letterhead) from your physician to confirm your need for particular apparatus.

6. Via priority check in with the wheelchair, you won't have to wait in line for Security...you'll get to the head of the line with the wheelchair porter

7. The wheelchair porter will take you directly to the final check in for your plane (and will take you make "pit stops" at the food court or restroom along, if need.)

8. The wheelchair porter will leave you and your chair at the final check in. This is where you generously tip the wheelchair porter who has been so helpful (and who is earning minimum wage!)

9. The airline staff will take you, in the wheelchair, with your caregiver accompanying you, into PRIORITY boarding, REGARDLESS of which class of ticket you are holding.

10. When you arrive at your destination, another wheelchair porter will meet you, take you to baggage pick up and finally take you to the curb where, where your family or cab can retrieve you.

Anyone reading these steps can follow them whenever you or a loved one is flying with a temporary (e.g. recuperating from surgery) or permanent disability!

 

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by Gabriella Graham/PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org

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_ Cancer Cannot Control Our Holiday Spirit!


Every morning I review the incoming updates as Pal members around the world report information about their current health status. The reports range from happy news of clear annual CT scans and normal range tumor markers to exchanges about chemo regimens that may no longer be effective in halting tumor growth among specific patients. We also address the needs of those families who are experiencing their first holiday season following the loss of a loved one.

Much like Ebenezer Scrooge and the Grinch, cancer attempts to creep into the holiday season to steal our joy. Regardless of how ruthless cancer may be, it does not defeat the fighting spirit of our fellow cancer patients and their families!

Countless Pals report they are “taking a break” from chemotherapy for the holidays, ready to re-engage the cancer beast again in January with a stronger, more powerful chemo “cocktail.”

Pals recuperating from challenging surgeries are making plans to begin the new year with improved strength and stamina.

Pal families who have lost a loved one are extending themselves to help other families and to begin new traditions.

As we prepare to celebrate Hanukkah and Christmas we look ahead to the New Year with renewed courage and enthusiasm for fighting the cancer beast!

Cancer cannot control our holiday spirit!

 

This essay is dedicated to all my fellow cancer warriors, Christine F Mike H, Charlotte H, Andy N, Josh O, Robert R and to the Pal families around the world.

 


This essay is an excerpt from “Where the Red Tailed Hawk Flies: Cancer Can’t Defeat Us!” by Gabriella Graham

Copyright © 2011 by Red Tailed Hawk Publishing/All rights reserved.

www.wheretheredtailedhawkflies.com

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_ In Support of the Nomination for Dr. David L Bartlett as recipient of the Leo Criep MD Excellence in Patient Care Award 2011

“As both a cancer patient and an advocate for cancer patients and their families, I have had the opportunity to travel throughout the United States to interview surgical oncologists regarding my own case, as well as the cases of my fellow patients.

This experience has provided me with opportunities to interact with these specialists and to be treated by several of them.

For a variety of reasons, I have determined that Dr. David L Bartlett is the most outstanding physician, as well as surgical oncologist, that I have ever had the privilege of knowing.

As a patient and an advocate, I examine many factors in selecting a surgeon for my personal care, or one that I would recommend to my fellow patients. David Bartlett excels for his skills as a surgeon, his knowledge of our rare disease,  and his ability to coordinate and “lobby” other specialists to work together for the benefit of cancer research.

One of the qualities that distinguish Dr. Bartlett from the majority of his international colleagues is his willingness to listen to patients, to hear their needs, hopes and fears, and to address their concerns frankly, with compassion.

Dr. Bartlett listens; he doesn’t lecture and overwhelm patients with bravado promises of cures or frightening scenarios of complications.

Time and time again, my fellow patients relay to me how much they appreciate Dr. Bartlett’s calm, unhurried and reassuring manner of responding to their questions. Dr. Bartlett treats patients as human beings, not as potential statistics.

In spite of his brilliance and international renown as an exceptionally skilled surgeon, Dr. Bartlett remains modest and does not boast about his many accomplishments. This factor alone endears him to his patients and renders respect and admiration from his colleagues in the medical community.

Regarding my personal experiences as Dr. Bartlett’s patient, due to the complexity of my case and medical history, I was declined for surgery by all of other most experienced surgeons at major cancer treatment centers across the United States, and had been referred to hospice, when I met with Dr. Bartlett for the first time.

The fact that I am still here today is nothing short of a miracle. The senior patriarch in the treatment of my rare cancer, who would not operate on me, now describes me as “the little miracle” … a miracle that never would have occurred without the skill, confidence, and brilliance of Dr. David L Bartlett.

 


Copyright © 2011 by Gabriella Graham, Patient

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_ Pioneers in Cancer Treatment

This morning I talked with a caregiver whose father has agreed to be treated with an experimental chemotherapy in an attempt to halt the rapid progression of the cancer that has challenged him for months. I commented to the caregiver that I believe his dad is courageous in agreeing to be treated with the new therapy, especially in consideration of the possible side effects of the treatment.

The son responded that his father is feeling anything but courageous. “Truthfully, Dad is distressed and uneasy about this new treatment. He has become suspicious of the doctors and wonders if they are using him as a guinea pig to test this new therapy.”

Who among us has not felt this way, even if just for a moment, when considering the pros and cons of established medical treatment, let alone, new medical therapies?

On one hand, we patients are optimistic that a new treatment will arrest and possibly eradicate our disease. On the other hand, as educated patient/consumers we read the “fine print”, hear rumors of what might possibly go wrong, and perhaps increase the suffering that we are attempting to prevent.

Virtually everyone living today, who has ever been treated through modern medicine, has benefitted since our mother’s pre natal care, from what were initially experimental treatments. These treatments have been refined and improved through the centuries. Anesthesia, pain management, infection prevention, vaccination, diagnostic tests, etc, etc, have all been developed through experimentation. Therapies that initially are tested with laboratory animals, eventually move ahead to human testing, if they are deemed worthwhile.

Since we have all benefitted from tests that were conducted on patients before us, we may consider it to be part of the human responsibility to also participate in new tests, if we are inclined to do so. We ask ourselves, “Do the risks outweigh the benefits?” “Do I have other choices?” “What are the consequences of me accepting this therapy, or not accepting it?” Sometimes we feel we are caught between a “rock and a hard place” especially when our options are limited.

How much does our perspective affect the way we consider the risks and benefits of new therapies? Do we see ourselves as “guinea pigs”, as helpless laboratory animals, or as pioneers dedicating our bodies to science? Are we gamblers, taking a chance with a roll of the dice, so to speak? Or, are we warriors, attempting another stand, risking possible defeat, or the bounty of improved health?

For those of us who have experienced years of medical treatments, surgeries, chemotherapies and the gamut of diagnostic tests, whether we realize it or not, we have contributed to the teaching of countless young physicians, nurses, researchers and medical technicians who have observed and treated our medical cases, both with “conventional” methods and new therapies. Yes, our bodies, are tested and used to educate healthcare professionals. In turn, the knowledge gained from our surgeries, and our medical care in general, is used to create medical therapies to aid patients in the future.

Just as we have benefitted, and our lives have been extended from the contributions of patients that were treated before us, so will future patients benefit from the medical care we receive today!



Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal or medical advice. Each patient’s case is unique, therefore individuals should seek the counsel of their own healthcare providers. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved. Visit us on the web at www.pmppals.org

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__ Questions to Ask Your Doctor About Chemotherapy

This week, Pal Caregiver, GF from the USA poses this question to pmppals@yahoo.com:

“My wife’s oncologist says she should begin the treatment of systemic chemotherapy to treat her diagnosis of Pseudomyxoma Peritonei. Should she agree to receive chemotherapy or not?”

PMP Pals responds: “As with any medical scenario, whether or not a patient commences chemotherapy is a topic that one should explore thoroughly with one’s personal physician and/or team of healthcare providers.

Each patient is unique. Pseudomyxoma Peritonei is not "one size fits all" disease. Whether or not a patient decides to pursue chemotherapy treatment will depend on the pathology, symptoms and aggressiveness of her particular case.

Pseudomyxoma Peritonei is generally treated by surgical oncologists with specifically detailed surgery (CRS), which may or may not include HIPEC (Hyperthermic Interperitoneal Chemotherapy.)

In the past, systemic chemotherapy was thought to be unsuccessful for patients diagnosed with Pseudomyxoma Peritonei. However, during the past decade, due to the availability of more chemotherapies developed for the treatment of colon/colorectal cancers, some physicians are recommending systemic chemotherapy for specific Pseudomyxoma Peritonei patients.

When preparing to consult with the oncologist, the patient should prepare a concise, detailed list of questions and should have the following reports in hand:

Pathology report(s) from surgery, biopsy, paracentesis, etc, 

Laboratory test(s) for tumor markers specifically the current CEA and CA 19 9 markers, and

The radiologist’s written report from the patient’s current CT scans.

These are among the questions for consideration when meeting w/your oncologist:

Why is systemic chemotherapy being proposed?

What is the extent and location (ie on the small intestine) of remaining visible disease, per recent surgery or CT scan(s)?

Why type of chemotherapy(ies) does the oncologist recommend?

Why is he/she recommending this particular chemotherapy regimen for this particular diagnosis?

What data justifies the particular chemotherapy that the oncologist is proposing?

How does the oncologist anticipate this particular chemotherapy will help the patient?

What are the known side effects of this chemotherapy?

For additional resources regarding the efficacy of systemic chemotherapy, you are invited to participate in the PMP Pals’ Chemo Resource Group via www.pmppals.org and to read chemotherapies being prescribed to Pseudomyxoma Peritonei patients on the CHEMOTHERAPY link a http://www.pmppals.org”

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed, professional, legal or medical advice. Patients should seek the counsel of their licensed healthcare providers.        Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org  

We have HOPE for YOU!

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_ SG from the UK asks:

“My sister is recuperating from PMP surgery at home. Her gall bladder, spleen and parts of her colon were removed.  No nutritional advice was offered at the hospital. She has no appetite and doesn’t want to eat. The operation was a success, but we are all very worried about how to get her eating again. What do you suggest?”

PMP Pals responds:

“While nutritional advice may not have been offered at the hospital, as a caregiver and advocate for your sister, you have the right to ask for advice from her healthcare professionals. Begin by asking the surgical oncologist to refer your sister to a registered, licensed dietician for a consultation. Be sure that the dietician is provided with a copy of your sister’s operative report so that s/he can read and understand which portions of your sister’s digestive system have been removed. Nutrition for GI cancer patients is not “one size fits all.” While many of us share the same diagnosis, our nutritional needs vary greatly. You sister’s case must be removed and a specific nutritional plan must be developed for her.

Post op anorexia, or suppression of appetite is fairly common among us for a variety of reasons, not the least of which are:

Nausea,

Inactivity,

Temporary reduction in senses of taste and smell,

Over sensitivity of smells, aromas, fragrances,

Fatigue

Emotional depression

Most of these, and other causes are temporary.

Sometimes TPN is prescribed to supplement an oral diet.

For additional, information …

clickhere to read Solutions to Weight Loss,

clickhere to read detailed information about nutrition for GI cancer patients, including TPN, Lactose Intolerance and the Malabsorption Diet, and

click here to read Post Op Weight Loss and Nutrition.

Once again, begin by consulting with your sister’s physician and request a consultation with a licensed dietician.

 

Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers, and are not intended as a substitute for professional medical or legal advice. Patients should seek the counsel of their licensed professional healthcare providers. Copyright© 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved.

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