Digestive Distress (Gas) Following Appendix Cancer Surgery
Gastrointestinal cancer patients, and the public in general, are often caught in the dilemma between eating a healthy diet and suffering from the pain, bloating, flatulence (gas) and associated distress that accompanies many common foods. These problems may be exacerbated for Appendix cancer patients, especially following surgery and/or chemotherapy treatments.
In today's article we provide general information regarding common complaints among our fellow gastrointestinal cancer patients. Consult with your healthcare provider regarding your specific personal needs. It is a normal condition to have air travel through the digestive system. The average adult produces up to two quarts of air (gas) daily. Gas may be produced by the foods you eat or when air is swallowed when you eat, drink or chew gum. Some medications, including antihistamines, and calcium channel blockers may contribute to gas production. Gas Producing Foods
Confused about gas producing foods? The following foods may be some of the “culprits” that you may have overlooked!
Bagels, Beans, Bleu Cheese, Bread, (Carbohydrates) Broccoli, Brussell Sprouts, Buttermilk, Cabbage, Carbonated beverages, Cauliflower, Corn Flakes, Crackers, Fried and Fatty foods, Fructose (natural sugar) Peanuts, Peas, Potatoes, Ranch dressing, Sorbitol (artificial sweetener) High fiber foods Intestinal cancer patients may experience difficulties in digesting a high fiber dietand should consult with their physician before adding or deleting foods from their meal plans. Common high fiber foods include: Apples, Artichokes, Asparagus, Beans, Bran, Brussell sprouts, Cabbage, Carrots, Celery, Peas, Pineapple, and whole grains Gluten Sensitivity Patients affected by Celiac Disease may be unable to consume whole grains. For more information about gluten sensitivity, see the Celiac Disease Nutrition page on www.pmppals.org Laxatives Laxatives should only be used after consulting with a physician. Bulk forming laxatives are taken with water, absorb water in the intestine and make the stool softer.
These laxatives may interfere with the absorption of some medications: Citrucel,Metamucil,Konsyl,Serutan
Stimulant laxatives cause intestinal rhythmic muscle contractions:
Correctol,Ducolax,Feen a Mint,Purge,Senokot
Stool softeners add moisture to the stool and may be prescribed following surgery: Colace,Dialose,Mineral Oil
Saline laxatives draw water into the colon for easier stool passage: Citrage of Magnesia,Haley’s M O,Milk of Magnesia
Diarrhea Diarrhea may occur following gastrointestinal surgery and may accompany chemotherapy.
Foods and beverages that may aggravate diarrhea:
Coffee, High fiber foods, Milk, Milk based foods (ice cream, yogurt) Raw vegetables, Strong tea
Foods that may ease diarrhea:
Applesauce, Bananas,Rice, Toasted bread
Medication to combat diarrhea (consult with your physician):
Immodium, Lomotil, Sandostatin
For more information about Diet, Nutrition, Malabsorption and intestinal distress, visit the NUTRITION link at www.pmppals.org
"It is extremely disappointing to know that an "expert" believes that the natural history of breast cancer is the same natural history of tumors whose spread is through the peritoneum.
As mentioned, the term “expert” denotes a person who has been exposed to all the possible complications in a specific work area, following this idea, it's impossible that the “Dr. expert” quoted by the New York Times can actually comment anything seriously about HIPEC. Now days, medicine is an extremely wide area, which makes difficult for any physician to comments on any area that’s not his daily work. I was hoping that a media outlet as the New York Times, would search for people who really stand up in their fields of work.
There are more than 30 world experts on every continent and most countries to be consulted about the HIPEC procedure. One can also read over 500 articles relating to this technique throughout the world. More importantly, the number of patients who were sentenced to a zero survival in 6 months without treatment and now the 65% of them have been able to survive 5 years more with an good life quality, that makes them able to work, eat, and be with their families.
It’s true that the mobility can be high in comparison with other therapies, but every time that a patient is presented with the possibility of this treatment, all the risks and benefits are carefully explained to them.
Returning to the attempt of correlating the treatments against breast cancer and HIPEC, the NYT article neglected to mention that for a long time, the absolute benefit of chemotherapy for breast cancer was at it’s best of 11%.... so why not to keep seeking for better treatments that can give to the patients a better benefits, ie HIPEC?
It is true that morbidity can be high compared with other therapies, but every time I propose HIPEC to a patient, I explain risks and benefits carefully."
Dr. Juan Manuel Medina Castro, Presidente de la Sociedad Médica del Centro, Oncológico Estatal
"Es extraordinariamente decepcionante saber que un "experto" cree que la historia natural del cáncer de mama es la misma historia natural de los tumores cuya diseminación es mediante el peritoneo. Como hemos comentado, el término experto denota a la persona que ha presentado todas las complicaciones posibles en un área de trabajo específica, imposible pues que el citado "Dr. experto" pueda en realidad comentar algo al respecto de HIPEC. En la actualidad, la medicina es impresionantemente amplia como para que cualquier médico pueda comentar algo de lo que no hace cotidianamente. Esperaba que la empresa que representan buscara gente seria como lo son ustedes para sus reportajes.
Hay en el mundo más de 30 expertos, en todos los continentes y la mayoría de los países a quien pueden consultar acerca de HIPEC, también pueden leer más de 500 artículos publicados referentes a la técnica, la experiencia de los diferentes centros a lo largo del mundo, pero más importante el número de pacientes que de ser condenados a una supervivencia de cero por ciento a 6 meses sin tratamiento, han podido vivir el 65% a 5 años con calidad de vida, conviviendo con su familia, trabajando, comiendo. Es cierto que la morbilidad puede ser elevada en comparación con otras terapias pero cada vez que la proponemos a algún paciente, explicamos detenidamente riesgos y beneficios.
Regresando al intento de correlacionar los tratamientos contra cáncer de mama y HIPEC, se les olvida decir que, por mucho tiempo, el beneficio absoluto de la quimioterapia para este padecimiento era máximo del 11% ….. entonces por que no ofrecer una terapia que puede dar un beneficio mucho mayor que eso."
Dr. Juan Manuel Medina Castro, Presidente de la Sociedad Médica del Centro, Oncológico Estatal
For more information about Dr Juan Manuel Medina Castro, visit the HIPEC Treatment Centers page at www.pmppals.org
Appendix Cancer Patients Can Overcome Depression
Depression is a condition that touches the lives of many patients, and their family caregivers. The symptoms of depression may become more pronounced during the winter or holiday season. Among the causes for depression among some Pseudomyxoma Peritonei patients are....
Isolation may include situations of not being able to relate to other cancer patients, nor having them relate to you. Most people have heard of colon, breast or lung cancer, few people, have ever heard of Appendix Cancer, or Pseudomyxoma Peritonei.
Many traditional or well-known cancer societies don’t support patients diagnosedrare cancers, as their research and support services are directed towards the more common cancers.
Many local or family physicians aren’t familiar with Pseudomyxoma Peritonei and may mis diagnose the condition, thus delaying appropriate medical treatment.
Patients and their loved ones may have concerns about surgery and othermedical treatments. Although the internet has become a modern tool for sharing information, some methods of information, i.e., via “chat rooms” or “message boards” can be sources of misinformation, leading to fear and confusion.
Insomnia, worrying, and general lack of sleep associated with diagnosis,can contribute to the condition of depression.
Lifestyle adjustments, whether temporary or permanent, associated with medical treatment, may contribute to depression. Changes in lifestyle may affectemployment, athletic recreation, relationships and intimacy.
Side effects from some medications may contribute to depression. Pharmacists and
physicians can educate patients and their caregivers about the possible side effects
related to some medications.
Medical treatment, and time taken from work to complete treatment, can strain any budget. The “Financial Benefits” link at www.pmppals.org provides resources for disability and other benefits, in addition, help with health insurance challenges.
Sources of Relief from Depression
Here are a few options for overcoming depression:
Seek professional counseling through licensed, healthcare professionals,Spiritual guidance of your choice, Direct, “one on one” communication with other “PMP Pals.”Request a “Pal Mentor” to assist you with helpful resources and practical suggestions!
A well-informed patient may be less likely to feel depressed after some of the fear and mystery of their medical treatment plan is fully understood.Become pro active in your medical treatment!Research your options for medical treatment.Become a “team player” with your healthcare provider!
Volunteer to help others.It has been proven in numerous studies that when we extend ourselves to help others, we benefit as well! Share your talents and positive experiences with other patients; we all have valuable and helpful resources to exchange!Find additional helpful articles by visiting www.pmppals.org
Articles posted in PMP Pals, on the PMP Pals’ Network Blog are written from the perspective of patients and their family caregivers, and are not intended to substitute for licensed, professional legal or medical assistance. Patients should seek the guidance of their licensed healthcare professionals. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved.
PMP Pal Celebrates Her First Vacation Following CRS and HIPEC! About this “Pal”: Kim lives in the United States and was diagnosed with Pseudomyxoma Peritonei during the latter part of 2009. She and her husband are the parents of young adult children, and haven’t allowed her diagnosis to prevent them from leading active lives! Kim shares this report about her recent vacation…
Late last year, I was diagnosed withPseudomyxoma Peritonei. I had CRS with HIPECin January. My surgery required me to have an ileostomy. The ensuing few months of recuperation earlier this year were very difficult. As time went on I realized that I needed to challenge myself to overcome my situation. Therefore, in July, I planned a trip to fly to New Jersey to visit some good friends of mine! Although this vacation would potentially include new obstacles for me, I felt that it would be worth the risk! While in New Jersey, I tried to never let my condition stop me from doing anything, as I had the loving support of my dear friends. They took me to watch a baseball game at the new Yankee Stadium! Instead of worrying about my ileostomy and all of its challenges, I remained focused on the all the laughs and the great time we were having! Since first being diagnosed, I had my share of difficult days, but now they have become few and far between, as I am learning to find my new sense of normal. Taking the risk of going on my trip was well worth it, and I will do more of the same in the future! Articles written in PMP Pals and posted on www.pmppals.org are written from the perspectives of patients and their families and are not intended to substitute for licensed, professional legal or medical counsel. Each case is unique, therefore patients should seek the advice of their licensed healthcare professionals. Copyright ©2011 by Gabriella Graham/PMP Pals’ Network. Visit us on the web at www.pmppals.org We have HOPE for YOU!
Document Your Office Visits with Your PhysicianDo you document your office visits with your local healthcare providers?If you are an appendix cancer patient, or the caregiver of a cancer patient, it is likely that, in addition to consulting with your surgical oncologist specialist, you meet with several other healthcare providers throughout the year.Your list may include your primary family doctor, local oncologist, endocrinologist, cardiologist, nutritionist, ophthalmologist and dentist. Each of these professionals needs to be kept in the "information loop" regarding your overall health care and any symptoms you may be experiencing.As a pro-active patient, you already know how prepare a list of questions prior to any medical consultation. When you meet with your primary family doctor, do you use your home computer to prepare two copies of your questions?With your copy in hand, and, while the second copy is being read at the same time by your physician, you will both be able to stay focused on the symptoms and concerns of the day.Request that your physician maintain his/her copy in your patient file (the copy can be scanned if your file is electronic.) By maintaining your copy in the physician's system, you are creating a record documenting your questions, symptoms, and the date(s) that you brought those concerns to your healthcare provider's attention.At home, you can maintain master copies of your questions and symptoms, then, periodically review them to determine any progress or changes you have occurred.Your list of questions and symptoms can be revised, as appropriate, per other medical consultations; some of your symptoms may be of interest to more than one of your healthcare providers.All healthcare providers, including ophthalmologist and dentists, would be advised of any medications you are taking (prescribed or OTC) as well as your laboratory test results.It is easy to prepare your list of questions and symptoms, prior to your medical appointments,using your home computer.At the top of the list, note the date of the office visit and the name of the healthcare provider that you will be meeting with.List your symptoms and questions concisely, and in order of importance,Print two copies, one for you or your family caregiver to "check off" during the appointment. Give the second copy to the healthcare provider.Maintain an original copy in your computer file. Save that copy and use it as a template to create "symptoms and questions" lists for all of your other medical consultations.This list is obviously not as detailed as the list of question you will prepare prior to meeting with your surgical oncologists. However, it is helpful, and often important, to maintain your own copies of questions that you ask of your healthcare providers.For additional suggestions and details on how to prepare,a list of questions for your healthcare providers read the PMP Pals’ Network Handbook: Physician Consultations.
Articles posted on www.pmppals.org and in the PMP Pals’ Network Newsletters are written from the perspective of patients and their family caregivers and are not intended as a substitute for licensed, professional medical or legal advice. Patients should seek the counsel of their licensed, healthcare professionals. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All Rights Reserved
How are patients selected for surgery?
This question is frequently asked by newly diagnosed patients and “veteran” patients experiencing a “recurrence of disease.”
Why are some patients accepted for CRS or CRS/HIPC while others are not?
Is there any truth to the rumors that surgeons “cherry pick” their patients?
Why isn’t every patient a candidate for surgery?
Surgeons refer to the process of evaluating a surgical candidate as “patient selection.”
Many factors are taken into consideration for patient selection.
The success of CRS and HIPEC may be dependent on the:
patient’s overall general health,
complete removal of all tumor tissue,
location of tumor site(s) and
type of tumor (histology and differentiation.)
The following is a very general explanation of how patients are selected as surgical candidates:
1. Preliminary disease criteria
Patients with metastasis to the peritoneum, aka Peritoneal Carcinomatosis.
Patients with disease contained within the abdomen (without metastasis outside the abdomen)
2. Preliminary general health criteria for patient selection
Good overall heath lacking any major co-morbid conditions*.
Age (some surgeons limit the ages of patients they will accept into surgery)
Mental health (coherence, ability to understand instructions, evidence of chemical dependencies, etc.)
Ability to pay for surgery (adequate health insurance coverage or ability to pay out-of-pocket for medical care)
3. Preliminary review of patient medical history
Medical history including surgical history, if applicable, co-morbid conditions* (ie diabetes, lung or heart disease) current medications (prescribed and OTC) allergies and family history
History of present illness including summary of symptoms
Operative reports of previous surgeries
Record of previous chemotherapy and radiotherapy treatments, if applicable, including dates and protocols
4. Extent of disease
Evaluation of CT scans to determine PCI (Peritoneal Cancer Index.)
The PCI helps the surgeon to determine the extent, volume and locations of the disease.
Evaluation of tumor block samples from original surgery(ies) if applicable.
Evaluation of tumor markers and associated lab tests
Physical examination of the patient
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 © 2011 by PMP Pals’ Network/All rights reserved.
Caregiving is a Balancing Act!
This week’s article is contributed by Pal Caregiver, Susan, who has more than five years of experience balancing caregiving for her husband, an Appendix Cancer patient, their teen son, and her aging parents.
Today Susan shares her suggestions for taking care of oneself, as a caregiver, in order to take care of ones you love!
"Our family has been learning to live with Pseudomyxoma Peritonei since my husband was diagnosed in 2004. We have been through his extensive surgery, the post-surgical recovery,his return to work for two years, a recurrence with metastasis to the chest and lungs, and two separate lengthy periods of chemotherapy treatment.
As the family caregiver, I have been on a leave of absence from teaching since 2008. Prior to my husband’s diagnosis, I was a very active volunteer in our community, and was a dedicated quilter/artist.
I offer these “tips” to other family caregivers….Acknowledge fatigue!
You will be taking on roles that used to be filled by the patient, as well as having full responsibility for things that you used to share. Try to let go of tasks that aren't important, for example, preparing a home-cooked dinner every night. No one will suffer if you order a pizza from time to time!
Ask for help.
Friends usually want to do something for you; they just don't know how to help. Once I mentioned that we weren't having anything special for Thanksgiving because I was too tired to cook. My friend delivered an entire meal to our door!
I set up an e-mail network of friends and family and post messages describing my husband’s medical treatment and mentioning whatever help we might need. Friends respond with help as they are able, bringing food, offering rides for our son, etc.Get help for yourself if you feel overwhelmed.
If you don’t take care of yourself, everyone around you will suffer. I find I have to paint as optimistic a picture as possible for my in-laws, so they don't worry, as they live very far away. My own mother becomes very distressed if she hears too many details.
When stress builds up, I contact the Employee Assistance Plan available through my husband's employer and schedule a meeting with a therapist. I can freely talk about my hopes, fears, and frustrations with the therapist. It’s such a relief to be totally honest about everything I am feeling. Other sources of help can be your local minister, or priest, or a friend who can listen without feeling they have to solve all your problems.Tap into community resources.
I live in Canada, where we have a government agency that helps patients stay in their own homes rather than being admitted to hospital. This service provides home visits from nurses, physiotherapists, nutritionists, housekeepers, people to help with baths, etc.
Additional sources of community services can be found in the phone book, through your family doctor, or your local public health unit.
Be kind to yourself.I used to try to be a perfect mother and wife.
I find we are all a lot happier now that I am only a good mother and wife! Now I am less stressed, I enjoy my family more and they like me better! Let go of the things you can't manage. When my son was young, I volunteered every day at his school. Now I try to go to special events where he will be speaking or getting an award and I let the other things slide.Accept that you will feel guilty (or angry, or sad, or depressed) when you have to choose between several different demands. Talk it out with your family.
Explain that you feel bad that you will be away taking care of your spouse, when your child is having “meet the teacher night”, or is going to the prom, or playing volleyball, etc. Arrange for someone to take your place; can a friend drive him to prom? Can he take a cab? Can Aunt Jackie go see the game? Arrange to meet the teachers at another time.
Even if our son is disappointed when we can't do something for him, he understands that taking care of his dad is more important now.
Communicate as a family. If everyone has a chance to be heard, hard feelings seem to evaporate.Give yourself time to adapt to your "new normal".
After my husband came home following seven weeks in the hospital, it seemed nothing would ever be the same. Indeed, it never was the same. Eventually we adjusted to “life after PMP” and gradually developed a new rhythm for living that fit our new reality.
We had to adjust again when he experienced a recurrence. My husband and son talked with me about their feelings. I talked things out with my therapist. I used to feel broken inside,but now I have come to see myself as different person, different than I would have been had PMP not changed our lives; I no longer feel “broken.” Bad things can happen to anyone. We need to live with “what is” and not in the “what if". I try to be thankful for the things I have, not resentful of the things I've lost.Adjust your expectations of yourself.Maybe today you need to sit quietly and read, (instead of vacuuming as you told yourself you should!) The vacuuming will always be there tomorrow!
Find someone you can relate to about what is happening in your life.
I communicate with several PMP Pals because we each understand what the others are going through. We talk about the medical issues, but also about quilting, and our families, and dogs and life in general! I enjoy feeling I have helped someone and I am grateful to have Pals who offers tips that help me.
Last, but not least, laugh when you can; cry when you need to.
Find a friend to lean on.
Take time for yourself.
Don’t let anyone tell you how you "should" feel.
Appreciate your partner's good qualities and turn a blind eye to the bad ones.
Live every day.
Get lots of rest.
Don't try to be perfect.
Life is short. Hope is powerful.Love is forever!"
Susan participates in the following PMP Pals’ Network Resource Groups:
Canadian Pals, Caregivers’ Club, Chemo Pals and Young Families with PMPArticles 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 © 2011 by PMP Pals’ Network/All rights reserved.
Dear Dr. Lerner, Thank you for taking the time to respond to my concerns and those of my fellow patients and their families. We are disturbed and disappointed that you would publicly compare HIPEC, a treatment so many of us have benefited from, to outdated, unsuccessful procedures that bear no relation to PSMs or cancers of the digestive system. Surely you realize that by posting your concerns via a forum such as the NYT, that you have the responsibility to investigate the topic under discussion; in this case, the efficacy of HIPEC. I am hopeful that patients who read your article will investigate their individual options for medical treatment, after thoroughly investigating the facts for themselves. Your inclusion of dramatic references to graphic and perhaps gruesome outdated medical care, including battlefield amputations and pelvic exenteration have no bearing on the HIPEC procedure and serve only to instill fear and doubt into a poorly informed public; a public whose readers may include the very patients who may benefit from modern HIPEC treatment. Physicians, patients and critics alike would like to see additional studies documenting the efficacy of HIPEC published. However, many published studies are posted throughout www.pmppals.org Pub Med, Springerlink, etc and more are underway. At the very least, please refer to the HIPEC Consensus for the Management of PSMs of Colonic Origin. Time is of the essence in cancer treatment. While researching our options for treatment and given the options of CRS with HIPEC or CRS alone, the majority of us select HIPEC. Patients prefer the option of specific targeted isolated regional perfusion/HIPEC during one therapy session (CRS or CS) as opposed to systemic chemotherapy over a period of months or years. HIPEC treatment is not a cash cow for surgical oncologists; the cost of HIPEC therapy is relatively minimal in relation the cost of the surgery and recuperation in the hospital which the patient is already being admitted for with or without HIPEC. CRS and subsequent hospitalization easily costs at least $100,000 while the HIPEC therapy portion of that bill costs an average of $4,000 to $7,000 depending on region/location. Compared to the cost of systemic chemotherapy, during which one treatment can easily cost $20,000, HIPEC is bargain! Like you, I personally find advertisement or “commercialization” of HIPEC therapy to be unsettling. However, it should be clearly noted that, to the best of my knowledge, NONE of the surgical oncologists listed on the HIPEC Treatment Centers page at www.pmppals.org advertise the availability of HIPEC commercially; not in Google ads, “Yellow Pages” nor elsewhere. All HIPEC treatment providers listed on www.pmppals.org are posted after being thoroughly vetted by us, the “Pal Patients” ourselves. The PMP Pals’ Network neither solicits, receives nor accepts advertising or funding of any sort from HIPEC treatment providers, cancer treatment centers, pharma companies, government agencies (NCI, NIH, NHS, etc.) As patient advocates we review the CVs, publications, and case histories, when determining which HIPEC Treatment providers we will or will not post on our website. Like all medical care, cancer treatment is rapidly being refined. I am optimistic there will come a day when “aggressive cancer therapy” as you describe it, is a thing of the past. Believe me when I say this; as in my quest to subdue Stage IV Mucinous Adenocarcinoma during the past thirteen years, I have had all non-essential* organs* removed and all essential* organs resected from the peritoneal cavity through a series of six challenging debulking surgeries for palliative care (and I have an ileostomy.) Finally, during the sixth surgery, in 2006, I was provided with the opportunity to receive the HIPEC treatment through the auspices of David L Bartlett at UPMC. Obviously, I am still alive today, in having outlived all the naysayers, and my local physicians (Drs. Doom and Gloom.) Anecdotal? Indeed. Rare? Not for my fellow PSM and gastrointestinal cancer patients who have also benefitted from HIPEC. Dr. Lerner, my case is an extreme one. Many PSM and appendiceal cancer patients are receiving HIPEC earlier in their course of treatment today, due to recognition of symptoms, improved identification of the diagnosis, and referral to surgical oncologist specialists such as the ones who provide HIPEC treatment. I am thankful that newly diagnosed patients are receiving appropriate treatment far earlier than what was originally available to me. Now with improved diagnosis, and appropriate, effective medical treatment, including HIPEC, lives are being saved and medical treatment costs are greatly reduced. Is HIPEC 100 per cent effective for all cases? No it is not. As we all know, there are no guarantees in cancer treatment. Those seeking 100% guarantees may be better suited to purchasing a new automobile or washing machine with a warranty. Are the “stories” of thousands of my fellow successful post HIPEC patients anecdotal as well? Perhaps. However, when patients are diagnosed with a rare “orphan” disease, we realize that we must serve ourselves first; no special interests, no “treatment du jour”. We are literally at the bedsides, in the trenches, if you will, of our fellow patients. For us, “do no harm” not only refers to other patients, but to ourselves and to our loved ones, affected by this challenging diagnosis of cancer. With best wishes for your good health, Gabriella Graham *I define non-essential organs that were removed as the following: Appendix Cervix Colon Gall bladder Peritoneal lining “scraping” Omentum Ovaries Rectum (partial) Spleen Stomach (partial gastrectomy) Uterus ** I define the essential organs that have been resected as follows: Both lobes of the liver (15 lb. mucinous mass was removed from the right lobe) Pancreas