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The Good News About Appendix Cancer!

By cancer patient, Gabriella




Newly diagnosed patients are always surprised when they call the PMP Pals’ Network hotline and hear me say that I am optimistic for their healthy future!

Generally, by the time new patients call, they have become frightened and discouraged after reading published medical statistics, and alarming online personal blogs and angst filled FB stories documenting the personal fears expressed by some patients.

While no one would ever logically welcome the diagnosis of what appears to many, as a mysterious cancer, newly diagnosed patients have reason to be encouraged thanks to improvements in the early diagnosis of appendiceal cancer, as well as the increase in the number of physicians around the world who are now qualified and experienced to treat this rare disease.

When I was finally diagnosed in 1998, following three years of complaining to my local physicians about obvious symptoms that they brushed aside, my disease had progressed to the point where my treatment options were limited and the opportunity to be completely cured of this cancer had passed me by.

Now, nearly 20 years after I first became symptomatic, more primary care physicians, OB/GYNs, general surgeons and radiologists than ever before have been educated to recognize the often enigmatic and elusive symptoms of appendiceal neoplasms and Pseudomyxoma Peritonei.

Within the PMP Pals’ Network we reject the definition of the buzz word “awareness” as a reference to wearing to rubber bracelets, colorful tee shirts, or posting online diaries of angst. Instead, our Network has consistently re defined “awareness” by spotlighting the most experienced specialists in the world, supporting state of the art research and sharing the success stories of appendix cancer survivors from all walks of life.

Accurate and early diagnosis is the first step towards effective treatment. As more patients have more opportunities to receive state of the art treatment by experienced specialists, we all, as patients, survivors, family caregivers and healthcare providers, have reasons to be optimistic for the future of newly diagnosed Appendix Cancer patients!

REFERENCES:

For more information, visit www.pmppals.org

We have HOPE for YOU!

Learn more about Appendix Cancer >

Find an Appendix Cancer treatment specialist in your region >

See profiles of Appendix Cancer survivors from around the world >


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 licensed, professional legal or medical advice. Each patient’s case is unique; therefore consult with a licensed professional regarding your specific needs.


Copyright © 2014 by PMP Pals’ Network. All rights reserved. Todos derechos reservados.

Visit us on the web at www.pmppals.org


We have HOPE for YOU



 
 
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PMP Pals’ Network® Welcomes Fred Siskind to our Advisory Council

The PMP Pals’ Network is proud to announce the addition of Fred Siskind to our Patient and Family Advisory Council.

Fred is a retired economist and had a career with the U.S. Department of Labor. Currently he is a part time consultant on safety and health issues for a contractor with the U.S. Department of Labor. He is also a widely published nature photographer.

Fred is a cancer survivor and was diagnosed with appendiceal mucinous adenocarcinoma in 2007. Following successful treatment with CRS and HIPEC, he has remained NED, and serves as a Pal Mentor to several Pal patients around the world.


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 licensed, professional legal or medical advice. Each patient’s case is unique; therefore consult with a licensed professional regarding your specific needs.


Copyright © 2014 by PMP Pals’ Network. All rights reserved. Todos derechos reservados.

Visit us on the web at 
www.pmppals.org

We have HOPE for YOU



 
 
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Pseudomyxoma Peritonei Survivor Story by Marilyn






About Marilyn:

Name:                          Marilyn
Location:                      Australia
Diagnosis:                    Pseudomyxoma Peritonei
Age when diagnosed:    46
Number of surgeries:     5
Treatment:                   CRS with HIPEC
Surgeon:                      Professor David Morris

Marilyn has been a member of the PMP Pals’ Network for ten years. She serves both as a Pal Mentor to newly diagnosed patients, and is a member of the Pals’ Advisory Council, representing patients in Australia and New Zealand.

Marilyn participates in the following Pals’ Resource and Support Groups:

HIPEC Pals

Pacific Rim Pals

Gal Pals

Mucinous Adenocarcinoma Pals

Marilyn shares the following with us:

As a relatively fit and healthy 46 year old, to be confronted with a diagnosis of Pseudomyxoma Peritonei was extremely daunting to say the least. When my doctor told me what he had discovered during surgery for a suspected ovarian tumour I could barely pronounce the words let alone understand what it might mean for me.

During that first surgery I had a debulking and I was told that I could be facing further surgery and, eleven months later, I was.

After my second surgery I knew there had to be a better answer, so my family, friends and I began the research. This was when we found www.pmppals.org. The information provided by the PMP Pals’ Network led me to my fantastic surgeon Professor David Morris at the St. George Hospital in Sydney.

When Prof Morris looked at my scans and considered whether he could successfully treat me, he confidently said the words, “I think this is possible”, which was certainly music to my ears.

I had one month to prepare for surgery by walking daily, swimming occasionally and generally being as fit as I could be.

In January 2004 I made the one and a half hour flight from my home in Melbourne to Sydney, was admitted to the St. George Hospital and underwent a seventeen hour peritonectomy with HIPEC.

I spent one month in hospital, five days of that time in ICU. I then left the hospital to spend the rest of the year at my sister’s home to begin my recovery. It took many months before I was physically back to full strength. The regular encouragement of family and friends, as well as the support from Pals far and wide, assisted emotionally when times were a little tough.

The following year I returned to part time work as a teacher, teaching art/craft and mathematics to young children. Although at times it was tiring, I was extremely grateful for the fact that I was back doing ‘normal’ things.

In 2007 I underwent another surgery.  My time in hospital was not as long and I recovered much more quickly.

It is now seven years since my last surgery and my monitoring schedule has been reduced to annual tests with no evidence of disease.

Since that time I have been able to return to my Primary school to continue part time work. I have branched out with working as a tour guide at one of the beautiful Melbourne museums where I meet many amazing local people and visitors from around the world. I have continued with my love of travelling and have visited several countries both in Asia and Europe. This coming May I will be touring Southern Spain and Portugal.

My continued connection to PMP Pals has become an integral part of my life now. Having experienced the support through the friendships developed, it is now important to me to give back that same support. It has also been an honour and a pleasure to mentor other newly diagnosed patients.



 
 
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Does Gender Make a Difference in Appendix Cancer Survival?  


 


Renowned appendiceal and colorectal cancer treatment specialist, Prof David L Morris, and his colleagues have shared their study of 257 appendiceal cancer patients treated with CRS and IPC in an effort to compare any possible differences in the survival rates between male and female patients.


Read the synopsis of Prof Morris' study > 




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 licensed, professional legal or medical advice. Each patient’s case is unique; therefore consult with a licensed professional regarding your specific needs.

Copyright © 2014 by PMP Pals’ Network. All rights reserved. Todos derechos reservados.

Visit us on the web at www.pmppals.org


We have HOPE for YOU


 
 
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Tips for Managing Folfiri Chemo Side Effects

by Pals' Network member, Warren





On the day of chemo, the nurse gives me an under the skin injection of Atropine before I start FOLFIRI.  I find this delays the onset of nausea by a couple of hours post chemo, enough time for me to eat and go for a short walk.

I take the following medications an hour before chemo

1.  Dexamethasone,

2.  Emend and

3.  Ondansetron.  

On day two I take

1. Emend and

2. Ondansetron. 

On day three I take only Emend.

After receiving chemotherapy I take Prochlorazine and wash the pill down with a lot of water.  I find that hydrating well after chemo lowers my level of nausea. After 22 treatments I haven’t thrown up once (but I have been close a number of times).  

I’ve been told by a number of nurses that Gravol works just as well as Prochlorazine (I haven’t tried Gravol).

Getting outside for a walk helps me cope with FOLFIRI since my sensitivity to smell increases tenfold and certain smells trigger nausea.  I can’t stand the smell of pencil shavings, perfume, dishwasher soap and most of the cleaning products that I have in the house.

I like to be distracted for at least two days after chemo (lots of movies, emails, writing lists, etc.) and I carry a bottle of water with me wherever I go and take constant sips.

I keep a pile of Kleenex in my pocket after my FOLFIRI treatment since I produce a lot of mucous (nose/mouth).


 



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 licensed, professional legal or medical advice. Each patient’s case is unique; therefore consult with a licensed professional regarding your specific needs.Copyright © 2014 by PMP Pals’ Network. All rights reserved. Todos derechos reservados.

Visit us on the web at www.pmppals.org

We have HOPE for YOU!





 
 
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Is Thalidomide Effective for Treating Appendix Cancer?

Phase II Clinical Trial Results






Surgical oncologist, Professor Edward A. Levine, and his colleagues at Wake Forest University, have investigated the effectiveness of Thalidomide in the treatment of appendiceal and colorectal cancers, post CRS with HIPEC.

The average age of participants in this study was 52 years old, and included 52% appendiceal cancer patients, and 48% colorectal cancer patients.

Click here to learn the results of this Thalidomide treatment study >





Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families, unless otherwise noted, and are not intended to substitute for specific medical care. Patients should seek the counsel of their individual specialists regarding their specific personal needs.

Copyright © 2014 by the PMP Pals’ Network/All rights reserved.

Todos derechos reservados.
Visit us on the web at www.pmppals.org



 
 
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Tips for Selecting an Appendix Cancer Surgeon

By cancer patient, Gabriella



It is common for cancer patients to seek a “second opinion” when preparing for surgical treatment.

Pat, as one such patient, has done her homework, and interviewed two specialists in the field of Appendix Cancer and Pseudomyxoma Peritonei. Both surgeons offer a very similar treatment plan of CRS and HIPEC.

After meeting and interviewing each of them,
Pat asks, “How shall I choose between the two?

We have answered questions similar to this, especially in our article “How Shall I Select a Surgeon?” At this point, Pat needs to refine her criteria for a specialist so that she will feel confident in her selection of her surgeon and treatment plan.

Obviously, skill and experience are especially important factors. However, given the choice between two talented surgeons, additional factors will help any patient in making a choice.

Here are some factors for consideration:

Do you feel comfortable talking with the surgeon?


Does the surgeon answer your questions directly?
Are you comfortable with the surgeon’s demeanor?                                                                                 
For some patients, personality and rapport are not as important as the surgeon’s experience and skill level.                                                                                                                                                          For other patients, a conflict in personalities may hamper recuperation.                                                   
Will your surgeon agree to communicate directly with your local PCP when you return home?

Have you investigated the surgeon’s postoperative staff?


Your surgery will last a few hours, but your post op hospital recuperation will last a few weeks. During those weeks, you will be under the care of the Residents, the Physician’s Assistant or Nurse Practitioner, and especially the nursing staff.

Have you met the Charge Nurse of the floor where you will recuperate following surgery (after release from ICU?)                                                                                                                                                                               How experienced is the nursing staff in caring for CRS/HIPEC patients?

What is the nurse to patient ratio on the floor where you will recuperate?

What is the ratio of RNs to LVNs to CNAs?

Is the floor where you will recuperate dedicated to patients of your specific surgeon?

What is the infection rate of the floor/wing where you will recuperate?

What is the infection rate of the hospital?

Other considerations to inquire about:

Is your surgeon required to perform a specific number of HIPEC procedures monthly? Quarterly?

Does your health insurance plan coverall costs of this surgeon’s services?

Does the surgeon offer treatment in a location that is geographically convenient for your initial surgery, as well as for follow up examinations?

Does the hospital offer reasonable/comfortable accommodations for your family caregiver(s)?

Every patient is an individual. The answers to these questions can help you to determine the best choice of a surgeon for your personal and unique needs.





Copyright © 2014 by PMP Pals Network Publishing. All rights reserved. Todos derechos reservados.   This article is copyrighted and may not be reproduced without written permission from the PMP Pals’ Network Publishing. The PMP Pals’ Network does not provide medical advice. Patients must seek the counsel of their own physicians and healthcare professionals.



 
 
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Are You Being Open and Honest with Your Doctor?

By appendix cancer patient, Gabriella



We all want to put our best foot forward when we meet with our physician, but are we neglecting to share important information that our doctor needs to know?

A phone call to the Pals’ desk from a Pal Caregiver, Aileen, prompts today's article!


Aileen tells us her husband complains about a variety of personal symptoms with her daily. Yet during monthly medical exams, when his doctor inquires, "How are you feeling?" her hubby replies with a bright and chipper, "Just fine, Doc!"

Frustrated, Aileen asks:

"Why doesn't my husband speak up and tell the doctor how he’s really feeling?"

Good question!

We patients have a natural inclination not to want to appear to be frail or vulnerable. Certainly we cancer warriors strive to carry a shield of independence and strength, even on days when we might not feel especially strong!

However, it is literally vitally important that we clearly advise our healthcare providers about all our symptoms!

Physicians are medical doctors; they are not mind readers. By neglecting to advise our doctors of all our symptoms we may be masking conditions that could and should be addressed promptly, before they become more troublesome.

There are additional practical reasons for maintaining an open and direct line of communication with our doctors. Recently, another Pal Caregiver, Patricia, advised me that she was shocked when her husband's claim for disability benefits was denied.

In consideration of the side effects Patricia’s husband experienced from systemic chemotherapy, she assumed his disability benefits would be granted promptly.

Upon receiving the DIB denial notice and after obtaining copies of her husband's medical records, she discovered that her husband had been advising his oncologist that he was "just fine" during his regularly scheduled exams.

"Perhaps my husband is in a state of denial" she offered.

Many chronically affected cancer patients do live in a "state of denial" (this author included!)We prefer to consider ourselves fit and well, in spite of a variety of physical challenges. Indeed, this "denial" may be one of the keys to fighting cancer with a positive attitude!

Following the DIB denial, Patricia’s husband contacted his doctor and clearly explained the detailed symptoms and side effects from his chemotherapy regimen, thus providing the oncologist with a true picture of the patient's distress. The DIB claim was re processed and approved based on the doctor's revised, and accurately detailed medical report.

As patients, we don’t want to dwell on distress, but when pain, digestive disturbances, nausea, or any other occurrences divert us from our normal activities, we should notate these specific symptoms, including dates and frequency (don't rely on your memory!) Prior to medical appointments, gather your notes, and compile a concise list or summary, to be reviewed and discussed with your healthcare provider.

Give a copy of your symptoms list to your doctor for filing or scanning into your chart. It's important to maintain copies of your personal observances of your specific symptoms in your patient file with your doctor.

We must be "open" with our healthcare providers by advising them of all our symptoms, thus enabling them to evaluate and treat our conditions appropriately!

 

 

Join the “Pals” and connect with other survivors and their family caregivers! >


Comments? We welcome your comments via “Contact Us” at www.pmppals.org >

 

 



Copyright © 2014 by PMP Pals’ Network Publishing. All rights reserved. Todos derechos reservados.

“PMP Pals” articles are written from the perspectives of patients and their family caregivers and are not intended as a substitute for professional medical or legal advice. Patients should consult with their own licensed healthcare professionals for medical advice.


Visit the PMP Pals’ Network at www.pmppals.org and become a “Pal” today!

There IS HOPE for YOU!



 
 
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Appendix Cancer Survivor Story by Marilyn





About Marilyn:
Name:                          Marilyn
Location:                     Australia
Diagnosis:                    Pseudomyxoma Peritonei
Age when diagnosed:  46
Number of surgeries:  5
Treatment:                   CRS with HIPEC
Surgeon:                      Professor David Morris

Marilyn has been a member of the PMP Pals’ Network for ten years. She serves both as a Pal Mentor to newly diagnosed patients, and is a member of the Pals’ Advisory Council, representing patients in Australia and New Zealand.
Marilyn participates in the following Pals’ Resource and Support Groups:

HIPEC Pals
Pacific Rim Pals
Gal Pals
Mucinous Adenocarcinoma Pals

Marilyn shares the following with us:

As a relatively fit and healthy 46 year old, to be confronted with a diagnosis of Pseudomyxoma Peritonei was extremely daunting to say the least. When my doctor told me what he had discovered during surgery for a suspected ovarian tumour I could barely pronounce the words let alone understand what it might mean for me.

During that first surgery I had a debulking and I was told that I could be facing further surgery and, eleven months later, I was.

After my second surgery I knew there had to be a better answer, so my family, friends and I began the research. This was when we found www.pmppals.org. The information provided by the PMP Pals’ Network led me to my fantastic surgeon Professor David Morris at the St. George Hospital in Sydney.

When Prof Morris looked at my scans and considered whether he could successfully treat me, he confidently said the words, “I think this is possible”, which was certainly music to my ears. I had one month to prepare for surgery by walking daily, swimming occasionally and generally being as fit as I could be. 

In January 2004 I made the one and a half hour flight from my home in Melbourne to Sydney, was admitted to the St. George Hospital and underwent a seventeen hour peritonectomy with HIPEC.

I spent one month in hospital, five days of that time in ICU. I then left the hospital to spend the rest of the year at my sister’s home to begin my recovery. It took many months before I was physically back to full strength. The regular encouragement of family and friends, as well as the support from Pals far and wide, assisted emotionally when times were a little tough.

The following year I returned to part time work as a teacher, teaching art/craft and mathematics to young children. Although at times it was tiring, I was extremely grateful for the fact that I was back doing ‘normal’ things.
In 2007 I underwent another surgery.  My time in hospital was not as long and I recovered much more quickly. 

It is now seven years since my last surgery and my monitoring schedule has been reduced to annual tests with no evidence of disease.

Since that time I have been able to return to my primary school to continue part time work. I have branched out with working as a tour guide at one of the beautiful Melbourne museums where I meet many amazing local people and visitors from around the world. I have continued with my love of traveling and have visited several countries both in Asia and Europe. This coming May I will be touring Southern Spain and Portugal.

My continued connection to PMP Pals has become an integral part of my life now. Having experienced the support through the friendships developed, it is now important to me to give back that same support. It has also been an honour and a pleasure to mentor other newly diagnosed patients. 



This article is copyrighted and may not be reproduced without written permission from the PMP Pals’ Network/Copyright © 2014/All rights reserved. Todos derechos reservados.
PMP Pals” articles are written from the perspective of patients and their immediate family caregivers and are not intended for substitution of advice or recommendations from licensed healthcare providers. The PMP Pals’ Network does not provide medical advice. Patients must seek the counsel of their own physicians and healthcare professionals.