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Appendix Cancer Survivor Story by Maureen






Name: Maureen
Location: USA
Diagnosis: Pseudomyxoma Peritonei with
Mucinous Adenocarcinoma of the Appendix with Carcinomatosis
Diagnosed at age: 54
Year diagnosed: 2001
# of Surgeries: 4
Treatment: CRS with HIPEC

About Maureen:

Maureen is the married mother of grown children and enjoys spending time with her husband and family! She celebrates more than five years of being cancer free and shares her experiences, as well as suggestions for healthy living!

Mis-diagnosis: “Ovarian Cancer”

In 2001, I had a kidney stone when a CT scan revealed something amiss with my appendix. My local surgeon performed an appendectomy; I was diagnosed with a mucocele (mucus cyst) of the appendix. My doctor mentioned in passing that sometimes a disease associated with this diagnosis. He directed me to have two follow-up CT scans during the first year following the appendectomy, and then released me.

Two years later, I began to feel bloated and felt something hard in my abdomen. My family doctor ordered an ultra sound, followed by a CT scan done.

When I returned to my family doctor, she told me that I needed surgery and diagnosed me with “ovarian cancer” I was referred to a surgical oncologist, who said I had “Stage 3 ovarian cancer.” During surgery, he discovered a 5-pound tumor. He recognized it was not ovarian cancer, did his best to debulk, and performed a total hysterectomy. Following surgery, he told me I had Pseudomyxoma Peritonei. He referred me to Dr Paul H Sugarbaker. I lived near Washington DC; therefore, the Washington Hospital Center was a convenient location.

I collected all my medical records for Dr Sugarbaker. The pathology report from my original appendix surgery in 2001 indicated that Pseudomyxoma Peritonei cells were detected in the mucocele. Somehow, the surgeon missed this important information! Dr. Sugarbaker examined me and reviewed my CT scans. He diagnosed Mucinous Adenocarcinoma of the Appendix with Carcinomatosis and scheduled me for surgery.

Preparing for Surgery

Preparing for surgery was a challenge! I was told that surgery was like running a marathon, so I prepared for that! I worked out with a trainer, and exercised at home for 90 minutes every day. My training regimen included running sprints on the treadmill. I delayed surgery for four months in order to attend my eldest son’s wedding!

Surgery and Treatment

“I was admitted to Washington Hospital Center in April of 2004. I experienced a thirteen hour cytoreductive surgery with HIPEC (Mitomycin-C chemotherapy with 16 mg. of drug heated at 41.5 degrees C.) The surgery included the removal of my spleen, gallbladder, greater omentectomy, lesser omentectomy, a small bowel resection and an ileostomy. I was in the hospital for 22 days, then released.”

Post Op Complications

“Upon my release, I never felt right and kept telling everyone that I didn't have any energy. It turned out that my sodium level was very low. I was readmitted to the hospital near the beginning of May. I was put on an IV and responded well. I needed to have my sodium checked again and found myself back in the hospital in June.

A home health care nurse to our home to test my blood weekly. When my sodium was low, she put me on an IV at home. This continued until my ileostomy was reversed, through another surgery, seven months later. I experienced three surgeries in fourteen months.

Cancer Free 10+ Years!

“It has been more than 10 years since my last surgery, with no recurrence or evidence of disease!”

Maureen’s Tips for Success

“I still am “religious” about exercise! I use an elliptical or treadmill every day. I see my trainer once a week.

I have a great husband, who has been by my side each day through my cancer journey.

During treatment, I wrote in my journal daily. I was able to say things in the journal that I might not have wanted to say to anyone. I have kept a very positive outlook and never believed that I was going to die!

I prayed and I know that there were people praying for me and I believe it made a difference.

We have a three year old grand daughter and I intend to be here to see her marry!”

Maureen’s Suggestions

Stay in touch with your body and listen for any thing that does not seem right.  You are in charge, so take control of your wellness!

I do not smoke and drinking has lost its appeal. I felt bad too many days to risk drinking and not feeling well.

I still have “issues” with my intestines and am careful to know where the bathrooms are located. I also feel I am blessed and will not complain because I am one of the lucky ones!”




Articles posted in “PMP Pals” or on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for professional medical or legal advice. Each patient is unique. Patients should seek the counsel of their licensed, healthcare professionals. Copyright © 2014 PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org

 
 
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HIPEC Specialist Shares Insight about Cancer Care in Russia: An interview with HIPEC specialist, Dr Vadim Gushchin

By G. Graham, PMP Pals’ Network

 

Dr Vadim Gushchin treats PSM, PC, GI and Colorectal cancer patients at Mercy Medical Center in Baltimore MD, but shares his expertise with colleagues based in his native homeland of Russia, as well as throughout Lithuania, Siberia and Ukraine.

Three years ago, while teaching a presentation on CRS (Cytoreductive Surgery) at the University of Vilnius in Lithuania, Dr Gushchin observed that while the local surgeons understood the concept and theory of CRS, patient care was challenged by the lack of financial resources.

Dr Gushchin noted,

“The economic crisis hit them hard. With the fall of the Soviet Union, the professionals embraced Western medicine and were helped by EU in switching the medical education system.”

Yet financial support for state of the art medical care continued to be limited.

Two years ago, Dr Gushchin was invited to Moscow to lecture on CRS with HIPEC. During this engagement, he observed,

“It took me some time to realize that my Russian colleagues are not capable of grasping the important details of Peritoneal Surface Malignancy oncology. The problem is much deeper - the lack of systematic modern oncological education.”

Dr Gushchin earned his medical degree in Moscow, then served his residency and fellowship at the University of Pennsylvania, the Washington Hospital Center, and Roswell Park Cancer Institute. As a result of his European and American training, Dr Gushchin says,

“I feel that I am really lucky to be able to get the education in the States. I see that I can make a difference in Russia with this knowledge. Therefore, I chose to teach both cytoreductive surgery and under this pretense, oncology in general.  This has been very interesting project.”

One of Dr Gushchin’s colleagues in Lithuania, enlisted his help in organizing a Peritoneal Carcinomatosis treatment conference, which was held in Vilnius, May 16-17. Dr Gushchin called upon his colleagues, Dr Marcello Deraco of Milan, Italy, and Dr Paul Sugarbaker of Washington DC, both highly experienced in formal mentoring other surgeons in teaching the techniques of CRS with HIPEC, to assist him with this conference. Surgical oncologists from the Baltic States, Russia, Ukraine, and Belorussia, participated.

Dr Gushchin tells the PMP Pals’ Network,

“The focus of this conference was cytoreductive surgery in the realities of Eastern Europe. We strive to bridge the gap and bring modern surgical techniques to previously underserved patients.”

Dr Gushchin has been, and continues to serve as a conduit for introducing state of the art western surgical techniques to Eastern European surgeons. Change in addressing complex medical challenges does not come quickly or easily. Dr. Gushchin observes the following:

“Even in the internet and email connected world, isolation of professional thought is common. I frequently observe surgeons using the same words and concepts but interpreting them with different meanings in such advanced areas of oncology as the treatment of patients with Peritoneal Surface Malignancies. Education, training, personal experience, and many other factors explain this phenomenon. Include individual surgical personalities and cultural differences into this mix and one would wonder if it is ever possible to teach and learn cytoreductive surgery across the nations. And yet, it is possible.

Conferences like this the one provide a good platform to explain the true meaning of complex surgical concepts by surgeons, like Drs. Deraco and Sugarbaker, who have been on the forefront of this field for several decades.

I hope to interpret and share their ideas, keeping in mind the possibilities for misunderstandings, so that next time I am doing cytoreductive surgery with my Eastern European colleagues, we understand one another thoroughly, so that we may combat and overcome the difficult oncological problem our patients have.”







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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Three Suggestions to Help You Recuperate from CRS with HIPEC (Appendix Cancer Surgery)

By appendix cancer survivor, Warren



Appendix Cancer survivor, Warren share three suggestions for recuperation techniques that he learned from his own experience while recuperating from surgery. As a husband and father of two young children, Warren placed high expectations on himself to “bounce back” quickly, but gradually learned that patience is needed, and helpful, while the body heals and stamina is gradually replenished! Warren shares the following suggestions

Educate Yourself about Your Specific Nutritional Needs

While hospitalized and recuperating from CRS with HIPEC, the hospital dietician provided me with a variety of pamphlets nutrition for cancer patients.

After I was discharged, I met with another dietician near my home, whose advice and diet pamphlets weren’t entirely consistent with what the hospital dietician gave me.  Instead of following one dietician’s advice, I followed both which resulted in daily menu changes for my Caregivers and confused everyone, including myself!

Realizing this wasn’t a sound approach, I contacted Gabriella at PMP Pals’ Network to discuss post-operative and ileostomy appropriate diets.  She showed me a couple of examples of diets, specifically for the needs of patients like myself, as listed on the Nutrition page on www.pmpals.org and I focused on one that eventually worked for me - the Malabsorption Diet!

Be Patient with Yourself during the Recuperation Process

I knew that it was going to take a number of months to get back to 80% of my previous strength and stamina but I felt guilty and frustrated when I couldn’t do things such as shovel the snow in my driveway and had to depend on my neighbors for that task. My guilt was reinforced when my wife did all the household chores after working a full day. 

I fixated on what I couldn’t do instead of appreciating the small daily joys of recovery, such as being able to walk a bit longer than the day before!

Take a Daily Nap!

Naps were (and still are) critical to my recovery. When I returned home from the hospital I initially napped for two or more hours each day.  After a few weeks I began to resent the time spent napping, I thought that I should be doing productive activities and that my body shouldn’t still require long naps.  I started limiting my naps to an hour or less but that difference stalled my recovery. 

Once I accepted that my body required (and enjoyed) a long afternoon nap, I put my recovery back on track!







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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Our Pal, Paul, shares the procedures in place at the clinic where he receives his chemotherapy treatment:



1.     When I arrive at the oncology clinic, I am given a list of the medications I am going to be given on that day. The certified Oncology nurse reviews them with me and discusses the optional drugs in the list.

2.     Before I am given any pretreatment drugs, the oncology nurse confirms my name and date of birth.

3.     Before I am given any chemotherapy drug, a second certified Oncology nurse comes in double checks the dosage and the drug. Both nurses must sign off on the medication. Frequently I see them double checking the dosage by multiplying my body mass times the recommended dosage and when there is a difference they call my oncologist to verify why I am on a reduced dosage or a different dosage than the company recommends.

4.     All of this is signed off in the clinic’s electronic medical system.




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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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!