What are the side effects of HIPEC? 11/14/2011
RS from the USA asks: “How long does it take to recuperate from HIPEC? What are the post op side effects of HIPEC?” GG responds: “Recuperation times and side effects are as varied as our fellow patients themselves. Currently, within the PMP Pals’ Network, post HIPEC patients range in age from 30 to 80 years of age! The most common side effects reported among our post HIPEC Pals are fatigue, nausea, medical anorexia, and weight loss; however these symptoms may related to CRS itself and can occur without HIPEC. Here are photos of just a few of the cancer free Pals, all of whom have been treated with HIPEC many years ago. Here are articles written by a few of our longtime Pals who have been cancer free, on average, ten years post HIPEC. Contact us to request a HIPEC Pal Mentor. For more information, please see our HIPEC Treatment Specialists page. Copyright © 2011 by PMP Pals’ Network/Gabriella Graham. All rights reserved. Articles published by the PMP Pals’ Network and posted on www.pmppals.org are not intended as a substitute for professional medical or legal care. Individuals should seek the counsel of licensed healthcare professionals regarding their own specific needs. Visit us on the web at www.pmppals.org Add Comment Solutions for Weight Loss During Chemo 11/10/2011
Solutions for Weight Loss During Chemotherapy Today’s question has been submitted by DG in Mumbai, India who seeks solutions for his father’s weight loss. DG says: “My father has lost seventy pounds since his surgery and chemotherapy treatment began nine months ago. Originally his weight was 180 lbs. Now he weighs 110 lbs. He is halfway through a 12 cycle chemotherapy regimen for the treatment of Signet Ring Cell cancer (appendiceal.) Based on his recent CT scans, his oncologist believes the chemotherapy treatment is helping my dad. However, due to my father’s weight loss, the chemo treatment has been suspended until my father can gain at least five pounds. Although my father is trying to maintain his caloric intake, he does not have an appetite. Do you have suggestions for how my father can gain weight?” GG responds: “Thank you for submitting your question. We will share your question with participants in the PMP Pals’ Network who have experienced similar situations and will ask for their suggestions. In the meantime, we offer the following suggestions: These are the three most common reasons "Pals" lose weight during and after medical treatment (surgery and chemotherapy) - 1. Digestive distress (eg vomiting) - 2. Anorexia (loss of appetite, typically post surgery, and/or during chemotherapy) - 3. Inability to absorb nutrition (due to ileostomy, gastrectomy, or other surgical removal of critical portions of the digestive system) From what you describe, your father may suffer from reasons #1 and #2 Reason #1 (digestive distress, vomiting) may be addressed/corrected through prescription medication to relieve nausea, as prescribed by your father’s oncologist. Non prescription remedies for nausea include ginger tea, dry crackers, and limited, unseasoned, bland foods served in small portions. Reason #2 (anorexia, loss of appetite) may be addressed by offering a variety of small meals and "snacks" throughout the day and noting which, if any of those foods offered, appeal to your dad. Here are resources provided by the PMP Pals’ Network to assist patients in understanding their nutritional needs: Review our NUTRITION page carefully for the following… BeneCalorie: ask your father’s physician whether this may be a beneficial supplement for your dad Lactose Intolerance :often overlooked by family caregivers, but very important for GI cancer patients, as many of us are lactose intolerant following surgery and cannot tolerate sugars, sweeteners, caffeine, chocolate, canned commercial nutritional supplements, like Boost and Ensure, milk and other dairy products) and read the Malabsorption diet. These articles may also be helpful: How can I gain weight? and How can I gain weight...I already drink Ensure Please keep in mind that every patient is unique; what works for one patient may not work for another. This is why it is important to incorporate a team of healthcare providers in the coordination of your father’s care. In this case, your father may benefit from the inclusion of a licensed clinical dietician and an endocrinologist, to be included in his healthcare team. The articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers, and are not intended as a substitute for professional medical or legal advice. Patients should seek the counsel of their licensed professional healthcare providers. Copyright© 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Why Doesn’t My Surgeon Specialist Visit Me Daily? Most PMP Pal members choose to schedule their surgeries at university hospitals. The majority of our surgeon specialists are professors; the young physicians who do visit you daily (more commonly twice a day) are their students, who carefully report on your daily condition, under the supervision of your surgeon specialist. Due to the detailed nature of our surgeries, it is not uncommon for our operations to last eight to fourteen hours, sometimes even longer. The time surgeons spend in the operating room does not include prep time to evaluate and plan the treatment of your individual case; this requires additional time. The long hours in the operating room, combined with hours devoted to consulting with newly diagnosed patients in the clinic, time devoted to research studies, time scheduled for coordination and preparation of symposiums and conferences, etc, leaves little time for daily bedside visits with patients in the hospital. Therefore, frequent monitoring of the patient’s recuperation, as conducted by the nursing staff and physicians in residence/training, provides the surgeon specialist with the opportunity to supervise your recuperation without daily visits. When your surgeon does visit you, don’t be surprised if s/he pops in very early in the morning (on the way to surgery) or very late at night (after surgery has been completed.) Copyright © 2011 by PMP Pals’ Network/Gabriella Graham. All rights reserved. Articles published by the PMP Pals’ Network and posted on www.pmppals.org are not intended as a substitute for professional medical or legal care. Individuals should seek the counsel of licensed healthcare professionals regarding their own specific needs. Visit us on the web at www.pmppals.org JL from the USA asks: “I am about 11 months post-CRS, and feeling great! My weight had stabilized at a pretty good number. However, recently my weight seems to be dropping again. Perhaps my body is not making efficient use of the food I eat, because portions of my digestive system were removed during surgery. I don't know what else to eat, or how to eat much more than I am eating. Why am I losing weight? How can I maintain my weight, and perhaps gain additional weight?” GG responds: “There could be many reasons for your weight loss. The first place to begin is by consulting with your medical team, which should include your surgical oncologist, an endocrinologist and a registered, licensed dietician. Among other tests and examinations, your surgical oncologist will investigate any possible recurrences of cancer; your endocrinologist will test you for diabetes, hormonal imbalance, pancreatic malfunction, and other possible reasons for your weight loss. After all of your tests and examinations have been completed, the dietician can assist you in developing a diet for your specific needs. Have you changed/increased your level of physical activity recently? Do you maintain a food diary and notate your daily intake of protein, carbohydrates, fats and overall calories? Click here to read “Do you need to keep a food diary?” Have you been tested for lactose intolerance? Many “Pals” attempt to regain calories by consuming high fat/high sugar content beverages and foods including commercial products like Ensure or Boost, or smoothies and milkshakes made with milk products, without realizing that post-surgery, some patients are unable to tolerate lactose, dairy, or simple sugars including corn syrup (found in many processed foods.) These “foods” can actually contribute to weight loss, as they often cause or contribute to diarrhea symptoms. NUTRITION pageincludes articles about the Malabsorption Diet and about Lactose Intolerance. When you schedule a consultation with a licensed dietician, give him/her a copy of your operative report so that s/he can clearly read the portions of your digestive system that have been removed. Diets for GI cancer patients are not “one size fits all” and must be developed for each individual patient. Our NUTRITION page includes information about a protein supplement sold under the name of BeneCalorie. Some “Pals” have found this product to be helpful in supplementing your diet. Ask your licensed dietician whether the BeneCalorie product is appropriate for you. In conclusion, consult with your medical team of specialists, as noted above, to determine 1) the cause of your weight loss and 2) methods to maintain and perhaps gain additional weight. 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. Patients should seek the counsel of their licensed healthcare professionals regarding their specific medical needs. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network. All right reserved. What Can I Wear Comfortably After Surgery? 11/02/2011
Post Op Clothing: What Should I Wear After Surgery? Answered by Pal Mentor, Misty P, USA Patients may experience unique challenges during the weeks immediately following release from the hospital. Incisions can be tender and clothing can cause irritation at the surgical site. Patients can anticipate these special needs and plan ahead by packing at least two comfortable post op outfits when packing to leave home for surgery. Both male and female patients may choose to wear athletic outfits with elastic waists bands. Commonly we lose 20-30 lose while in the hospital therefore the waistbands that fit snugly the day we were admitted to the hospital are too loose to wear upon discharge. Elastic waist pants are a practical option, especially if a patient has a stoma. Some patients prefer to wear suspenders. Jumper style dresses with no waistband are a comfortable option for some women. Jumpers made of heavier fabric, i.e. corduroy, and worn over a sweater, with boots, are a warm option for fall and winter wear. Many hospitals stock soft, knit underwear, specifically designed to be worn comfortably, post-surgery for women who have had abdominal and pelvic surgery. If they are unavailable on the floor where you are recuperating, ask a nurse to obtain these underwear garments from the OB/GYN floor, where they are commonly available post Caesarian section. Due to the length of the CRS incision, which may extend up to the breast bone, traditional bras, especially those with underwires, may be uncomfortable during recuperation. Soft knit, or sports knit style bras may be a more comfortable choice for many women. Bali Bra’s “Barely There Microfiber Damask Crop Top 0103” is an example of a comfortable choice, constructed without any metal. These garments can be obtained in department stores, outlet malls or online. For additional post op clothing suggestions see the PMP Pals’ Network Handbook #2: Preparing for Surgery BB from the USA asks: “I had a clear colonoscopy, yet I have Pseudomyxoma Peritonei. Why wasn’t PMP detected during my colonoscopy?” GG responds: “Nearly all of us “Pals” (including Stage IV) patients have "clean" or "clear" colonoscopies because Pseudomyxoma Peritonei rarely penetrates the colon. “PMP” can "surround" the colon and obstruct the colon, but those conditions occur from outside the colon, thus are not necessarily visible/detectable via a colonoscopy. Many of our newly diagnosed Pals exclaim "how can I have cancer when I had a "clear" colonoscopy?" While the colonoscopy detects polyps, inflammation, diverticulitis, etc, it generally does not detect appendiceal cancer or Pseudomyxoma Peritonei.” Copyright © 2011 by PMP Pals’ Network/Gabriella Graham. All rights reserved.Articles published by the PMP Pals’ Network and posted on www.pmppals.org are not intended as a substitute for professional medical or legal care. Individuals should seek the counsel of licensed healthcare professionals regarding their own specific needs. Visit us on the web at www.pmppals.org Can Tumor Markers Predict Appendix Cancer? 10/19/2011
Q: TZ from the USA asks: “I have been diagnosed with Appendix Cancer. My adult children want to be tested to determine whether they might have appendix cancer or Pseudomyxoma Peritonei in the future too. Do tumor markers indicate a propensity for this diagnosis? Or, are tumor markers effective for detection only after the disease as developed?” GG responds: “We don't have a marker that indicates a predisposition to Pseudomyxoma Peritonei. The CEA and CA 19 9 are common markers to help detect the presences of abdominal cancer. Tumor markers are not foolproof in detecting cancers, but they are a helpful "tool", among other "tools" in diagnosing cancer. For more information, please read Appendix Cancer Staging.” Copyright © 2011 by PMP Pals’ Network/Gabriella Graham. All rights reserved. Articles published by the PMP Pals’ Network and posted on www.pmppals.org are not intended as a substitute for professional medical or legal care. Individuals should seek the counsel of licensed healthcare professionals regarding their own specific needs. Visit us on the web at www.pmppals.org Nausea and Vomiting 10/13/2011
Q: LA in the USA asks the following… My adult daughter had CRS and HIPEC three months ago, yet still feels nauseated with occasional bouts of nausea. Her surgical oncologist says it will take a few months for her digestive system to “wake up.” Is this normal? GG responds: Each patient’s case is unique; it's not unusual for patients to experience nausea three months post CRS and HIPEC. However, your adult child should be physically evaluated by her surgical oncologist to rule out any complications (ie obstructions, new tumor growth, adhesions, etc.) For future follow up care, she may consider doing what some GI cancer patients like myself do; seek the counsel of a local gastroenterologist. Since gastroenterologists specialize in treating the digestive system as a whole, some of them are more knowledgeable regarding GI distress than are the local "family doctor" or local oncologist. Perhaps your daughter’s surgical oncologist and a local gastroenterologist develop a treatment plan to discover the source of your daughter’s symptoms and alleviate them. 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. What is the Peritoneum? 10/11/2011
The peritoneum is the transparent serous membrane that lines the abdominal cavity. What Questions Shall I Ask My Surgeon? 10/06/2011
The PMP Pals’ Network suggests that patients prepare a personal list of questions prior to meeting ith a surgeon for a pre op evaluation. Here are a few questions for your consideration. Refer to the PMP Pals’ Handbooks, Preparing for a Consultation with a Specialist and Preparing for Surgery for detailed lists of questions to ask your physician. Treatment Is my diagnosis aggressive? Does it require treatment? What are my treatment options for my particular diagnosis? If you were me, which option would you choose and why? What is my prognosis with the treatment you recommend? What is my prognosis without treatment? What does “watch and wait” mean? Surgery Will any organs be removed? If so, what, if any, are the ramifications of losing those organs? Will I have an ostomy? If so, which type? Ileostomy? Colostomy? Urostomy? If I have an ostomy, can it be “reversed?” If so, when? Will I have the HIPEC treatment? Is HIPEC optional? How will my pain be controlled after surgery? What, if any, are the risks/complications from this surgery? From HIPEC? Will the HIPEC treatment and your fees as my attending surgeon covered by my insurance? Post Op (After Surgery) Will my family caregiver be able to visit me in the ICU? How often will you visit me during my hospitalization? Who will oversee my post op recuperation? You (my attending surgeon) or the Fellows or Residents? How long will I be hospitalized? When will I be able to return to work? When will I be able to return to work? Surgeon’s Experience How many patients with my diagnosis do you treat each year? How many surgeries have you performed on patients with conditions like mine? How often do you treat patients with the HIPEC procedure? How experienced is your surgical team and post op nursing staff in treating patients with my condition? Refer to the PMP Pals’ Handbooks, Preparing for aConsultation with a Specialist and Preparing for Surgery for detailed lists of questions to ask your physician. 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 Pals' Network
Resources for Appendiceal and Colorectal Cancers, Pseudomyxoma Peritonei and all Peritoneal Surface Malignancies ArchivesApril 2012 CategoriesAll |
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