FREQUENTLY ASKED QUESTIONS
 
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Frequently Asked Questions

Please let us know if you have any questions/answers you wish to add.

What is PMP?

How is PMP Treated?

What is Appendiceal Cancer or Cancer of the Appendix or Appendix Cancer?

What is Adenocarcinoma ?

What is Mucinous Adenocarcinoma ?

What are Signet Ring cells?

What is a Carcinoid tumor?

What is Peritoneal Carcinomatosis?

How is Peritoneal Carcinomatosis treated?

What is HIPEC or Perfusion Surgery?

What is MOAS?

Who are the SPECIALISTS?

What questions should I ask my doctor

What should I take with me to consult with my doctor?

How can I prepare myself for the MOAS?

What should I bring to the hospital when I go for surgery?

What if my insurance company refuses to pay for the surgery with the specialist of my choice?

Do I need chemotherapy?

What are the tumor markers CEA, CA125 and CA19-9 and what do they mean?

What if I have to have an ostomy?

My recovery after MOAS seems to be awfully slow - what are your experiences?

How can I gain weight during chemotherapy or prior to surgery?

What if I can't afford to travel to a specialist?

How can I find out about clinical trials?

 

 

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What is PMP?

PMP is an abbreviation for a "syndrome" known as Pseudomyxoma Peritonei.  Literally, this means false (pseudo) benign tumor with mucinous features (myxoma) of the abdomen (peritonei). PMP is sometimes known as "jelly belly".

Because PMP is such a rare condition, it is an "orphan" disease. This means that there is little knowledge of it in the medical community and little research is being done to find better treatments. This is why it is so important to promote awareness so that an appropriate standard of treatment is recognized and money is raised/made available for research. There is about 1 person with PMP for every 1,000,000 people in the U.S.

PMP is caused by low- to moderate- grade mucin-producing tumor cells that usually arise from the appendix.   PMP is difficult to classify in to "low grade", moderate or higher-grade, due to its unpredictable behavior, both in its microscopic appearance and in the individual person.  To most pathologist's PMP looks "low grade", but in PEOPLE it can act in a higher-grade fashion growing and spreading, and producing mucin/jelly more quickly than expected.  This discrepancy between the microscopic/pathologic/scientific description/classification  AND  the actual "clinical" behavior of PMP in the patient, makes it much more difficult for the doctor to make accurate predictions, unlike breast cancers and colon cancers where the expected behavior of the tumor cells is more predictable.  We generally like to think that PMP severity exists on a spectrum from low to moderate to high grade.. Despite pathology that looks low grade and a big "whew!" from the oncologist ("its just PMP") each person's version of PMP may defy what the doctor's and scientists and pathologist's THINK they know!  PMP patients need experienced medical oncologists and surgical oncologists.

Some characteristics of PMP;

  • It rarely spreads via the lymph system or bloodstream, nor does it spread to the bones.
  • It generally remains in the abdominal area, perhaps into the pelvic area, however rarely is there pulmonary involvement.

There are three common classifications of PMP and diagnosis usually includes the following:

  1. Disseminated Peritoneal Adenomucinosis (DPAM) – also called adenomucinosis; this is the so-called “benign” form of the disease because the mucinous cells do not show signs of malignancy; however, because of the nature of PMP itself, it is still a deadly disease without proper treatment.  A person who has been diagnosed as having a mucinous cystadenoma probably has DPAM.
  2. Peritoneal Mucinous Adenocarcinoma (PMC) – this is the form of PMP in which the mucinous cells do show signs of malignancy; the cells are more invasive than in cases of DPAM.  Furthermore, PMC may also involve “signet ring cells” which are more aggressive cancer cells and can make the disease more difficult to treat. 
  3. Intermediate – also called hybrid, or PCMA-I/D; this is a form of the disease which falls between the two described above.

 

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How is PMP Treated?

It is very difficult to find experienced PMP oncologists and surgeons (and pathologist's and radiologists for that matter) which leads to a variety of treatment recommendations from watch and wait, hysterectomy/ovarectomy, "partial" debulking, partial debulking followed by chemo etc. .  Many times a patient has undergone many different treatments before finally finding an experienced doctor - this makes treatment outcome less favorable. It is imperative that a patient consult with a specialist as soon as possible after diagnosis. It is recommended that every patient get at least one "second" opinion on pathology as well as treatment.

"Traditionally, surgical treatment consisted of debulking that was repeated until no further benefit could be achieved; systemic chemotherapy was sometimes used as a palliative option. Now, visible disease tends to be removed through visceral resections and peritonectomy. To avoid entrapment of tumour cells at operative sites and to destroy small residual mucinous tumour nodules, cytoreductive surgery is combined with intraperitoneal chemotherapy with mitomycin at 42 degrees C. Fluorouracil is then given postoperatively for 5 days*. If the mucinous neoplasm is minimally invasive and cytoreduction complete, these treatments result in a 20-year survival of 70%. In the absence of a phase III study, this new combined treatment should be regarded as the standard of care for epithelial appendiceal neoplasms and pseudomyxoma peritonei syndrome." * Authors Sugarbaker PH., Institution Washington Cancer Institute, 106 Irving Street, NW Suite 3900 Washington, DC 20020, USA. Paul.Sugarbaker@medstar.net Title New standard of care for appendiceal epithelial neoplasms and pseudomyxoma peritonei syndrome. Source Lancet Oncology. 7(1):69-76, 2006 Jan.

* Note: HIPEC specialists may perform the CRS/HIPEC procedure only - without the 5 day followup chemotherapy treatment, depending on the post-surgical condition of the patient and their ability to tolerate it. An HIPEC specialist may not prescribe to the secondary treatment at all, offering the CRS/HIPEC treatment only.

Every treatment plan and every surgery has to be individualized, unlike colon or breast cancer where there are some fairly well prescribed treatment "regimens" or "recipes" for doctors to follow.

RADIATION THERAPIES (whether external beam or intraperitoneal) GENERALLY DO NOT PLAY A ROLE IN SUCCESSFUL REMISSIONS OF PMP and make later surgery nearly impossible.  Best to avoid, even if they are doing it at Mayo Clinic in Rochester, MN!  Big Name Cancer Centers do not necessarily have an edge on treatment strategy.  Patients need to evaluate all treatment options presented to them critically.

PMP tumor cells seem to spread and grow by causing inflammation in surrounding tissues. Many cancers share this same characteristic, which has lead some cancer researchers to investigate in this direction. Some PMP doctors treat inflammation with Celebrex/non-steroid antiinflammatories (NSAIDS) in hopes of prolonging remission using low-risk, low-toxicity drugs.

 

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What is Appendiceal Cancer or Cancer of the Appendix or Appendix Cancer?

A malignancy of the appendix, accounting for about 1 in 200 of all gastrointestinal malignancies. Although unusual, cancer of the appendix can range in type. The most common type of appendiceal cancer is carcinoid tumor with adenocarcinoma next. Tumors of the appendix often present with peritoneal seeding of the malignant cells. Advances in treatment have raised survival rates to about 80%.

 

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What is Adenocarcinoma ?

This term refers to tumors, or abnormal cells, originating from tissues that normally secrete something or produce something. In the case of colon cancer or appendix cancers, or in the case of PMP, the cells are originally found in the lining of the intestines and their old job was to produce slippery slimy mucin to help passage of food and stool down the pipe! Another example is: a tumor of the thyroid gland is an "adenocarcinoma" and it produces excessive unregulated thyroid hormone

 

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What is Mucinous Adenocarcinoma ?

The term "mucinous" means that something has a lot of mucus. Adenocarcinomas that are comprised of at least 60% mucus are referred to as mucinous.

 

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What are Signet Ring cells?

The term "signet ring cell" describes the appearance of certain cancer cells. When a signet ring cell adenocarcinoma tissue sample is dehydrated for viewing under a microscope, the nucleus gets pushed all the way over to one side due to the fat content of the cell. This makes the cell look like a signet ring. Signet ring cell adenocarcinomas are considered more aggressive than regular adenocarcinomas and are harder to successfully treat.

 

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What is a Carcinoid tumor?

A carcinoma-like tumor that behaves less aggressively than carcinomas. Usually carcinoids of the appendix are coincidental findings and have not spread until greater than 2 cm in diameter.  Over 95% of appendiceal carcinoids are less than 2 cm in size.

 

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What is Peritoneal Carcinomatosis?

The spread of multiple tumors on the surfaces and linings of the abdomen and/or abdominal organs. A primary source of the tumors could be the intestines, colon, stomach, pancreas, appendix, or ovaries.

 

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How is Peritoneal Carcinomatosis Treated?

The treatment for peritoneal carcinamatosis is pretty much the same as that for PMP (see PMP treatment). The approach uses cytoreductive surgery which includes the removal of visible tumor and affected non-essential organs within the abdomen and pelvis. Then the peritoneal cavity is flooded with chemotherapy solution in an attempt to eradicate residual disease. The surgery may or may not be preceded or followed with intravenous chemotherapy

 

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What questions should I ask my doctor?

About diagnosis, prognosis, and treatment options:

  1. What exactly is my diagnosis?
  2. Show me my scans and my problem areas
  3. How many other patients with this diagnosis have you treated?
  4. What outcomes have they had?  Do you have statistics?
  5. What are my treatment options?
  6. Which one(s) would you recommend for my condition?  Why?
  7. Are you willing to look at my research and work with me on my treatment plan?
  8. What is my prognosis without further treatment?
  9. What is my prognosis with various treatment options?  Do you have or know of statistics to help me evaluate the options?
  10. If you had been given this diagnosis, what would you do?

If I choose to have surgery:

  1. If I choose to have surgery, what organs are likely to be removed?
  2. How many surgeries have you performed on patients with conditions like mine?
  3. Will you use HIPEC as part of the surgical procedure? 
  4. How much experience have you had with HIPEC, and what equipment do you use?
  5. How experienced is your surgical team with the entire procedure?
  6. Are the post-operative units trained to care for people who have had this type of procedure?
  7. What kind of pain management systems do you use?
  8. How long do you estimate that I would be hospitalized?
  9. How long before I would be able to return to work?
  10. What kind of complications can result from this surgery?
  11. If you had to have this surgery, who would you have perform it?

 

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What should I take with me to consult with my doctor?

  • surgical procedure reports
  • pathology reports
  • CT Radiology reports and actual films/CDs
  • tumor markers and other lab reports
  • any research materials you would like to share/discuss
  • a list of your questions
  • a friend or family member

A medical facility will likely want all medical records forwarded to them in advance of your consultation.

In some cases, these records are not automatically provided to you – sometimes there will be forms to fill and fees to pay.  But once you have them, make copies and have them ready to hand out, as needed, when meeting with a physician who will be treating you.  (These forms may also be needed for various insurance purposes, including disability claims.) Keep copies of everything in a binder - don't give your copy away - make additional copies or have the medical facility make a copy for their purposes.

 

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How can I prepare myself for the MOAS?

The MOAS is a very tough surgery, so you need to be in the best health and physical condition possible::

  • Treat this as a marathon and prepare as such - run/walk/cycle - get at least 30 minutes of aerobic exercise per day at least 2 weeks pre-op**
  • Eat healthy meals - no junk food
  • Take a vitamin supplement - (some doctors recommend 5 days of 3x/day Impact supplement with arginine and omega3 fatty acids pre-op which has been shown to minimize surgical infections, length of stay in the hospital, complications etc.) **
  • Get plenty of rest - 8+ hours of sleep/night
  • Keep stress level down (yoga,.music, relaxation exercises may help)
  • Research has shown that taking an anti-inflammatory prior to and after surgery can possibly minimize adhesions and scar tissue **
  • Check out this tip sheet for avoidance of hospital-borne illnesses
  • Ask your doctor about any immunizations you should have/not have
  • Get some sunshine in your life - spend some time outdoors soaking up some vitamin D
  • Create a caringbridge site or blog to keep loved ones abreast of your progress
  • Go to the PMP Bellybutton Yahoo Group to ask questions or just express your feelings to those that have been there.
  • Spend quality time with people you love.
  • Do things you love -- enjoy life and try not to dwell on the upcoming surgery!

** Consult with your doctor before taking any supplements, medication or engaging in a new exercise regimen.

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What should I bring to the hospital when I go for surgery?

For the patient: 
Different patients suggest various “necessities” for getting through the hospital stay.  Various suggestions include:

  • your own pillow
  • something to hug - such as the “Moshis”/squishy pillows or stuffed animal (to hold against you as you cough. laugh or change position)
  • portable music
  • glasses (if you wear contacts)
  • toiletries (esp a new toothbrush)
  • easy-to-slip on slippers or shoes (like clogs)
  • robe - you can drape it over your shoulders
  • pictures of loved ones
  • Big T-shirts and drawstring pants for the stay at a local hotel after surgery

Generally, you don’t need much in the way of grooming products or clothing.  You probably won’t need books, either, unless you have a relatively long stay.  Most of your focus will be on getting your bodily functions back to the point where you’ll be able to get home!

For the caregiver(s):
Many of us would recommend that a caregiver should remain with the patient at all times while the patient is still relatively helpless (connected to tubes, finding it very difficult to move, etc.)  Many hospitals are, sad to say, shorthanded.  There can be a lapse in response after a patient hits the call button, and the caregiver may need to be the “hands and feet,” for the patient, as well as the patient’s advocate.

Things for a caregiver to bring:

  • good books or “lap work” to do
  • portable lap desk
  • comfortable clothes and shoes
  • laptop
  • journal to log patient’s progress
  • snack food
  • music for you and the patient
  • thermometer (for checking patient's temperature after you leave the hospital)

 

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What if my insurance company refuses to pay for the surgery with the specialist of my choice?

This is a problem that has been faced – and overcome – by a number of members of the PMP community. Generally, most agree that the support and help of a primary care physician or the local oncologist can be helpful. In addition, many insurance companies will assign a case manager to work with patients who have rare, unusual, or complicated conditions. The case manager can help to explain the complexities of the disease, but remember, he/she is an employee of the insurance company. You have to be your own best advocate. It may be helpful to send them a link to this or similar web sites. Laurie Todd, The Insurance Warrior may be able to help you address problems with your insurance carrier.

 

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What is HIPEC or Perfusion Surgery or IPHC or CRS/HIPEC?

CRS/HIPEC - CytoReductive Surgery combined with Hyperthermic Intraperitoneal Chemotherapy. By using standard surgical methods, all or nearly all-visible tumor in the abdomen is removed (cytoreduction). In an effort to treat any remaining tumor cells, HIPEC is performed. The term "intraperitoneal" means that the treatment is delivered to the abdominal cavity. The term "hyperthermic chemotherapy" means that heated fluid (hyperthermic refers to temperatures greater than normal body temperature) is circulated (perfused) throughout the stomach cavity (abdomen). The heated fluid contains an anti-cancer drug (chemotherapy drug). This drug, Mitomycin-C, has been shown to be effective at killing tumor cells remaining in the abdominal cavity after surgery. Other chemotherapy drugs may also be used.


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What is MOAS?

"Mother of All Surgeries!" - it refers to CRS/HIPEC - CytoReductive Surgery combined with Hyperthermic Intraperitoneal Chemotherapy), sometimes known as HIPEC or perfusion surgery. The phrase was coined by Sheri Telesh on her web site "Brian's Story" about her husband Brian who had PMP and has been cancer free for over 8 years. "Since being diagnosed this past summer, Brian has had two surgeries so far and is recovering nicely just in time to have what we call "the mother of all surgeries." (Brian had his surgery in NYC in October 1996 at Memorial Sloan-Kettering Cancer Center)
The members of our group have been using the acronym rather "fondly" ever since!

 

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Who are the Specialists?

AUSTRALIA
Morris David UNSW Dept of Surgery, St George Hospital, Sydney, Australia slog@unsw.edu.au
61293-502070
BELGIUM
Ceelen Wim P Surgical Oncology
University Hospital 2K12IC
De Pintelaan 185, B-9000 Ghent, Belgium

wim.ceelen@ugent.be

www.surgery.ugent.be

32-9-332 62 51
BRAZIL
Rossi Benito Mauro Departmento de Cirgurgia Pelvico, Hospital do Cancer A.C. Camargo, Rua Professor Antonio Prudente, 211, Sao Paulo, Brazil bmrossi@hcancer.org.br 55-11-3207-0500
CANADA
Temple Walley Tom Baker Cancer Centre, Calgary, AB, CANADA walleyte@cancerboard.ab.ca 403-521-3723
FRANCE
Elias Dominique Surgical Department, Centre Anti-Cancereux, Institut Gustave-Roussy 94805 Villejuif Cedex, France elias@igr.fr. (33)-142-114-383
Gilly François-Noel Surgical Department, Centre Hospitalo Universitaire Lyon Sud, France francogi@lyon-sud.univ-lyon1.fr
(33)-478-861-375
GERMANY
Jähne Joachim Henriettenstiftung, Chirurgisches Zentrum
Marienstraße 72-90, Hannover, Germany
  05 11 289-2101/2100
Müller
Herwart Department of Surgical Oncology, Carl von Hess - Hospital, Ofenthalerweg 20, Hammelburg, Germany

www.surgicaloncology.de

h.mueller@Klinik-Hammelburg.de

+49-9732-900156
Piso Pompiliu Klinik für Viszeral- und Transplantationschirurgie
Medizinische Hochschule Hannover, Hannover,Germany
piso.pompiliu@mh-hannover.de +49-511-5326534
ITALY
Deraco Marcello Istituto Nazionali Tumori Via Venezian 1- Milano, Italy marcello.deraco@istitutotumori.mi.it (39)-02-23902362
DiFilippo Franco Instuto Regina Elena, First Department of Surgery
Per Lo Studio E La Cure Dei Tumori, 291 Viale Regina Elena,
Rome, Italy
   
JAPAN
Yonemura Yutaka Shizuoka Cancer Center, 1007 Shimo-Nagakubo, Nagaizumi-Machi,Suntou-Gun, Shizuoka-Ken, 411-8777 y.yonemu@scchr.jp 81-(0)55-989-5235
KOREA
Yu Wansik Kyungpook National University Hospital
Department of Surgery, 50 Samduk-Dong, Taegu, 700-721
  82-053-420-5605
THE NETHERLANDS
Verwaal Vic Het Nedelands Kanker Instituut, Antoni van Leeuwenhoek Ziekenhuis, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands

v.verwaal@nki.nl

+31 20 512 9111
NORWAY
Wiig
Johan The Norwegian Radium Hospital
0310 Oslo, Norway

johan.wiig@radiumhospitalet.no

47-22-93-5944
SWEDEN
Mahteme
Haile University of Uppsala, Uppsala, Sweden

Haile.Mahteme@surgsci.uu.se

+46 (0) 18-611 00 00
SWITZERLAND
Lange Joachen Kantonsspital St. Gallen, CH-9007 St. Gallen, Switzerland

www.surgery.ch

ccs1@ms1.kssg.ch

071-494-1312
UNITED KINGDOM
O’Dwyer Sarah Christie Hospital, Manchester, UK Christie Hospital PMP Services +44 (0) 161 446 8051
Moran Brendan

The Hampshire Clinic, Basing Road, Old Basing, Basingstoke, UK

The Hampshire Clinic

44-01256- 354747

OTHER INTERNATIONAL
Sugarbaker International Associates
surgicaloncology.com/txsites.htm  
USA
Ahmad Syed A. The Barrett Cancer Center, The University of Cincinnati Medical Center, Cincinnati, OH ahmadsy@ucphysicians.com

513-584-8900

Bartlett  David  UPMC Cancer Pavillion, Pittsburgh, Pennsylvania

Ikeyia Wallace (Admin Contact) wallaceiv@upmc.edu

412-692-2852
Barone Robert Oncology Associates of San Diego
San Diego California.
www.oncologysandiego.com 858-637-7888
Esquivel  Jesus  St Agnes Hospital, Baltimore, Maryland 

Robin Cianos - Nursing Coordinator for IPHC Program: rcianos@stagnes.org

Dr. Esquivel:jesquive@stagnes.org Website: www.hipec.org

410-368-2743

866-844-1869

Foster Jason 984030 Nebraska Medical Center, Omaha, Nebraska 68198-4030 Amber B Burke RN BSN OCN aburke@nebraskamed.com
Phone 402.559.9806 Fax 402.559.7900  
Goodman Martin Tufts Medical Center, 750 Washington St #9248 Boston MA 02111

mgoodman@tuftsmedicalcenter.org

www.advancedcancerhope.com

617-636-9248
Graves Gregory Sutter Medical Center , Sacramento, California checksutterfirst.org/cancer 916-454-6900
Harrison Lawrence University of Medicine and Dentistry of New Jersey, Newark, New Jersey L.Harrison@UMDNJ.edu 973-972-5583
Holbrook Ryan CANCER CARE NORTHWEST - RADIATION & SURGICAL ONCOLOGY, Spokane , WA  Ryan F. Holbrook, M.D. 509-228-1600
Lambert Laura UMass Memorial Medical Center - Memorial Campus, Worcester, MA

Laura Lambert, M.D.

laura.lambert@umassmemorial.org

508-334-5274
Levine  Edward  Wake Forest University Hospital, Winston-Salem North Carolina  elevine@wfubmc.edu
336-716-4276 
Loggie  Brian  Creighton University Medical Center, Omaha Nebraska  PA - Holly Sennett hollysennett@creighton.edu
402-280-4100 
Lowy  Andrew  Moores UCSD Cancer Center, La Jolla, CA

Appointments

(866) 773-2703
Mansfield  Paul  MD Anderson Cancer Center, Houston Texas  Worcester, MA
713-794-5499 
Sardi  Armando  Mercy Medical Center , Baltimore, Maryland

cancersurgery.com

asardi@mdmercy.com

410-332-9294
Shen Perry Wake Forest University Hospital, Winston-Salem North Carolina  pshen@wfubmc.edu 336-716-4276
Sticca Robert University of North Dakota School of Medicine & Health Sciences 501 North Columbia Road Grand Forks, ND rsticca@medicine.nodak.edu 701-777-3057
Sugarbaker  Paul  Washington Cancer Center, Washington DC  surgicaloncology.com
202-877-3908 
Sussman Jeffrey J The Barrett Cancer Center, The University of Cincinnati Medical Center, Cincinnati, OH sussmaj@ucmail.uc.edu

513-584-8900

 

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What are the tumor markers CEA, CA125 and CA19-9 and what do they mean?

CEA, CA125 and a CA19-9 are tumor marker tests used for the indication of colorectal malignancies. The antigens detected in the blood are either being produced by the tumor or are being produced by the body in reaction to the tumor.

CEA: < 2.5 is normal (5 for smoker), > 10 is high

CA19-9: < 35 is normal, > 100 is high

CA-125:< 35 is normal, > 50 is high

CEA: slight to moderate CEA elevations (rarely above 10) occur in 15-30% of benign diseases of the intestine, the pancreas, the liver and the lungs: liver cirrhosis, chronic hepatitis, pancreatitis, ulcerative colitis, Crohn's disease, and emphysema. Smokers also have elevated CEA.

CA 19-9: slight cholestasis can lead to elevated CA 19-9 serum levels. Elevated values are also found with inflammatory diseases of the gastrointestinal tract or the liver, and in cystic fibrosis.

CA 125: Usually used as test for ovarian cancer. Slight to moderate elevations can also occur in individuals with cirrhosis, hepatitis, endometriosis, first trimester pregnancy, ovarian cysts, and pelvic inflammatory disease. Non-ovarian malignancies include cervical, liver, pancreatic, lung, colon, stomach, biliary tract, uterine, fallopian tube, breast and endometrial carcinomas.

It is the marker trend that is significant for those whose markers do move with the presence of tumor. An upward trend can indicate that something may be happening. A downward trend can indicate that the tumor is shrinking. A CT scan can confirm this, or not ... sometimes the only way to see if something is happening is to open up and look. It's not an exact science .... yet.  

 

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What if I have to have an ostomy?

Many people live normal and productive lives with an ostomy. Your surgeon will often have a pretty good idea before the surgery whether this will be necessary.  There are many good resources for living with an ostomy, whether it is temporary or permanent.

One patient on the PMP bellybuttons website says:

“I have an ileostomy which it seems is going to be permanent.  But considering the alternative, I have learned to live with it the best I can.  I have returned to an almost normal life.  My job is strenuous and requires me to be mobile and I have made it work.” 

Here are some helpful links:


Challenges Adjusting to an Ostomy for Young People: http://www.geocities.com/mr-ostomy/Challenge1.htm

United Ostomy Associations of America: http://www.uoaa.org/

United Ostomy Association Discussion Board: http://www.uoaa.org/forum/index.php

 

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Do I need chemotherapy?

Your doctor may advise you to undergo systemic chemotherapy if you are not currently a candidate for MOAS or possibly as a pre-op/post-op treatment if you are an MOAS patient (MOAS includes intraperitoneal chemo - normally mitomycin).

The most common current systemic chemo regimen for appendiceal cancer/PMP is FOLFOX+Avastin. This drug combination has shown promise in the shrinking and softening of tumor.

The FOLFOX regimen includes 5-Fluoruoracil (5-FU), Leucovorin and Oxaliplatin.

5-FU - one of the most commonly used chemotherapy drugs to treat cancer

Leucovorin - A vitamin B complex that helps counteract some of the negative effects of the 5-FU

Oxaliplatin - A fairly new platinum based chemotherapy drug used mainly for colo-rectal cancers.

Avastin - Avastin is not chemotherapy, but it is given in combination with chemotherapy. While chemotherapy attacks the tumor, Avastin attacks the blood vessels that surround and "feed" the tumor.

Xeloda - 5-FU in a pill form 

Patients who undergo this regimen report a variety of side effects, including tiredness, neuropathy to the hands, feet and throat resulting in numbness, and heightened sensitivity to cold.  Avastin can also cause nosebleeds or hypertension. Consult with your doctor regarding other potential side effects.

 

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My recovery after MOAS seems to be awfully slow - what are your experiences?

Recovery from the surgery may seem frustratingly slow.  After all, your internal organs have been moved around, removed, chemically treated, scraped ….  No wonder you feel awful!  Here are some tips from others who have gone before you for taking those critical steps to recovery:

  • Go slowly – on eating, becoming active, getting back to normal.
  • Eat small meals, and focus on eating things which are easily digestible for you.  You will probably find that it takes very little to feel full.  Eating too much can make you very uncomfortable, so take it easy even if you want to regain weight.
  • Food may taste odd for a while, but try to eat anyway.
  • Walk.  Around the house, around the block, around the neighborhood, around the mall.  When you begin your journey, remember that you have to get back home, so only walk half as far as you think you can.

. It takes a few months to feel "normal" again. NEVER hesitate to call your doctor or PA if something doesn't feel "right".

 

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How can I gain weight during chemotherapy?

Check out this web site for some recipe ideas : http://web.cancernutritioninfo.com/main.cfm?id=1335.

 

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What if I can't afford to travel to a specialist?

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How can I find out about clinical trials?

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