CancerCompass message board discussion started by sue d. on 2/4/2004 http://www.cancercompass.com/message-board/message/all,1051,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I would like to talk to anyone who has esophageal cancer and find what treatments have been successful, and in particular anyone who has had the photodynamic therapy offered at Cancer Treatment Centers of America in Tulsa. sue d. Wed, 04 Feb 2004 00:00:00 GMT I was diagnosed with esophagus cancer and it had spread to liver and lungs and lymph nodes (stage 4) .My doctor decided to treat with chemo and I have been in remission for almost a year the cancer on my liver has just shown some growth in Jan 2004. My chemo was carboplatin, and two others I cannot remember right now. Just keep fighting and don't ever give up and pray a lot. Donny C. Donny C. Thu, 12 Feb 2004 00:00:00 GMT Sue - My brother in law had esophageal cancer and was treated with chemo and radiation. I am a certified nutritionist and helped him with diet and nutritional supplements. I would be glad to tell you what he did. He is cancer free now after being told he had 6 months to a year. Nancy C. S. Fri, 13 Feb 2004 00:00:00 GMT My Husband was found to have esophagus cancer in an early stage in 1/2000. The Dr wanted to take out his espohagus and he said no. It had not spread outside the first layer of the esophagus. He had Chemo and Radiation treatments. In 2002 he changed his cancer dr to the VA clinic, so they did a scope for their records and the cancer was back in the area next to where the first cancer was. They said it could have been a cancer cell that did not die the first time but this also was caught at an early stage. He had radiation treatment this time. His last can scan and scope came back cancer free. Check out all the treatment that you can find and don't let the Dr push you in to anything. Keep praying for a healing. It does work Nydadpig Sun, 15 Feb 2004 00:00:00 GMT My husband 55yr was diagnosed in Aug/03 with Esophageal cancer, which had spread to liver, lungs, some lymph nodes and some bone involvement, Stage 4. Being in basic good health he received aggressive chemo of Cisplatin, Epirubisin and Zeloda for 6 rounds. The tumor had shrunk, bone involvement resolved and lungs and liver improved. He is now on a 3mo.break and will get a repeat CT scan and blood work to see if any progression and plan of care from there. Would like to hear if anyone has had Photodynamic Therapy treatment for this and how it worked and where it was done. We also did lots of praying, meditation and relaxation. Any other success stories we would like to hear. Donna Donna H. Mon, 16 Feb 2004 00:00:00 GMT Donna - I would be glad to let you know what I did for my brother in law when he was battling Esophegeal cancer. I helped him to keep his body strong and we adjusted his diet to rid it of all things that fed the cancer and weakened his system. email me if you would like details. Nancy S. Nancy C. S. Tue, 17 Feb 2004 00:00:00 GMT Nancy, where had your brother-in-laws cancer metastasized? Where did he receive treatment? Did he have the photodynamic therapy I have read about? How long did his treatment last? When was he diagnosed and how old is he? I would like to know how you helped him. I am a RN but this is foreign to us as I am in the maternity dept. I have the dietician's book from the Cancer Treatment Centers of America and have found some very useful things we are starting. Any help or info you can give me would be greatly appreciated. Ernie just turned 56 and retired so this has been a very stressful 6 mos. Thank you. Donna Donna H. Fri, 20 Feb 2004 00:00:00 GMT My brother is 44 years old and was diagnosed with espohogeal cancer in April, 2004. He's doing chemo and been doing a lot of nutritional things on his own...but we're not sure he's doing all the right things. Can you advise on the nutritional help you gave your brother in law? Marykay Fri, 11 Jun 2004 00:00:00 GMT Could you please send me the same information? Kenny Thu, 17 Jun 2004 00:00:00 GMT Nancy could you please send me that information also? Thank you VERY much! Ken E Kenny Thu, 17 Jun 2004 00:00:00 GMT Nancy, Please let me know what you did for your brother in law as I have the same problem with mine. Thank you so very much. Terry Fri, 18 Jun 2004 00:00:00 GMT Nancy, I am also searching for information. My mother has stage 4 esophageal and stomach cancer that has spread to her liver. The doctors offer no treatment at all, have said the treatment would not prolong her life and would only make her very ill. The prognosis is 6 months. My brother has found an alternative therapy using cesium. This is something I know nothing about and research is not giving me anything helpful. Mom has been taking cesium for about a month. She has lost 12 pounds, is very weak and shaky, unsteady on her feet, nauseated, not eating well, sleeps a lot. Can you or anyone out there tell me anything about cesium, or something else that would help? My brother tells me the cesium causes the cancer to self destruct and the body needs a lot of potassium and magnesium because the cesium uses minerals to destroy the cancer. Cesium causes the pH in the body to become alkaline to 8.0 and higher. Any help? Dorismw Sun, 20 Jun 2004 00:00:00 GMT My husband was diagnosed with esophageal cancer last year (stage 3 adenocarcinmona). He went through chemo, radiation and surgery which removed the top of his stomach and lower esophagous. At the six month endoscopy the biopsy showed cancer. He is feeling well, eating well and we had thought that we had this beat. I'm looking for information on diet. We already eat a diet high in fresh vegs and fruits. I've been making soy protein shake with yogurt, frest fruit, fruit juice and wheat germ in the morning and would like some on soy protein (spiru-tein high protein enery meal) is helpfull for a cancer diet? Any information would be greatly appreciated. Janet h Sun, 20 Jun 2004 00:00:00 GMT Could you please tell us what you did? My husband has esophageal cancer, diagnosed May 28th, 2004, he's in stage 4 with squamous cell metastatic, meaning it has already spread to his lymph nodes, they gave him 9 to 12 months. We have a daughter getting married on August 14th this year and were not sure if he'll even make that. So we can use all the help and information we get. Thank you Cheryl R. Cher53 Sat, 26 Jun 2004 00:00:00 GMT Hi Cheryl, My mom was diagnosed with stomach cancer 2 years ago. They gave her 6 months to live. She is still here. She had her whole stomach removed and they found cancer cells in her esophogus and lymph nodes. After 6 months of chemo treatment it showed no signs of cancer. She has went through CT scans, blood work, PET scans and none of them showed any signs of cancer. Three weeks ago she had her gallbladder removed and they found the cancer has returned. The doctors again gave her 1 to 6 months to live. She is not giving up. They have so many new treatments now. Her oncologist is thinking about sending her to the clinical trials. Don't take no for an answer when it comes to treatments. There is treatment for everyone. Let me know how things go. If you go to cancer.gov find a number to call this place, they will send you free information on clinical trials specifically for your stage and type of cancer. Mira Mirat Sun, 27 Jun 2004 00:00:00 GMT My husband was diagnosed with EC 4/30/04 and was told that surgery or radiation would not be indicated as it was Stage IV and had already spread through the lymph nodes. He has had two rounds of chemo - the first one was Carboplatin and Taxol and we saw good results - tumor receded and lymph nodes shrunk. Two months later the pain came back and the PET showed that the lymphs were still involved so he underwent a round of Cisplatin and Taxotere. Very hard on him and unfortunately it has now spread to the liver and possibly the lungs. I am wondering if you are having any successful treatments that we could investigate. Thank you. Lynne Ann Sun, 21 Nov 2004 00:00:00 GMT Hi.. My husband is starting his 2nd round with esophageal cancer and I would appreciate any diet and nutrition info you could send me. Thanks and bless you, Liz Elizabeth Sun, 21 Nov 2004 00:00:00 GMT Liz - I would be very glad to advise regarding diet and nutrition. I need to know particulars. What is diet like now? How difficult to eat and drink and other questions. Nancy S. Nancy C. S. Mon, 22 Nov 2004 00:00:00 GMT My son was diagnosed with Cancer of the GE junction in 3/04 after loosing almost 50# and being treated for back strain @ back pain. I took him to the Ireland Cancer Center when his local Dr. had done an endoscopy & found a tumor in his stomach & across his esophagus. After a scan - it was found that the tumor started at the cranial area of the stomach - was not "in" the esophagus yet, but had lesions on his liver & lung. He was started on a clinical trial of Xeloda, Oxaliplatin, & Irinotecan. The treatment was for 4 weeks - then off 2, etc. for a total of 6 cycles. After 2 cycles he had a scan completed & was diagnosed as "near partial remission." He had a couple delays @ low WBC. He had back pain to start with, but after 2 chemo treatments it disappeared. When it was time to start the 3rd cycle, he had an additional 3 week delay @ loc WBC. The back pain returned and the family Dr. did a entire body bone scan. This showed a spot on his thoracic spine. His chemo was stopped and he rec'd. 10 radiation treatments. His last treatment was 9/12. From 9/10 - 11/5 he could barely eat or drink anything due to an enflamed esophagus. I asked for nutritional information, etc. to help him - I was told to try Ensure or Boost. Both of these caused him diarrhea. He went from 154# to 133. When he was receiving chemo he went from 144# to 162. He handled the chemo on the clinical trial with no problems. Anyways, he ended up in our local hospital for dehydration, in the emergency room of the Cleveland hospital for dehydration, and then a week later they put him on a mild chemo (stating he no longer qualified for the trial as they feel his cancer "progressed" while on the study) - still weak and not eating. After 2 treatments he ended up in the Cleveland hospital for pain & dehydration. While there they put him on a nutritional supplement - which now after being on that for a couple weeks - he is able to eat and drink anything. BUT - now the Dr. said since he ended up in the hospital after the mild chemo - they plan no further treatment - saying he can't handle any....not taking into consideration his condition caused from the radiation. He is on state medical coverage. BUT if I can take him anywhere that might help him I will find the financing, help, etc. Can anyone give me any advice? This is my only surviving child....my youngest son was killed 12/21/02 @ a work accident. Thank you for any help you can give me. Anyone know anything about the Burczynski Clinic in Houston, Texas??? Cheryl I. Mon, 29 Nov 2004 00:00:00 GMT Your son's symptoms and cancer progression sounds just like my husbands which was diagnosed at the end of April 04 with EC with a complaint only of some back pain. My husband has adenocarcinoma of the esophagus at the GI junction and it had already spread to the lymph nodes. My husband has had two series of chemo and is now on his third. He responded to the first series (Carboplatin and Paclitaxol) very well and was in partial remission. The next series was Taxotere and Cisplatin which was very hard on him and unfortunately did not stop the spread which is now in his liver and lungs. He has just started Navelbine and is also taking Celebrex. We will see if this helps. He is unable to eat as well but drinks Ensure and Boost and tries to eat a little - he does like ice cream. I have a packet from the Burcynski Clinic but have not completed the paperwork. Has anyone tried chemo with Celebrex? Lynne Ann Fri, 03 Dec 2004 00:00:00 GMT I will let you know how our visit goes. We have an appointment at the Bruzynski Clinic in Houston, Texas on Monday, December 13. I have had my son's records faxed there already and talked to them over the phone. They received his records and feel he is a good candidate for their therapy. I sure pray it goes well. I will let you know how it goes when we get back. We should be back just before Christmas -- or right after. Cheryl I. Fri, 03 Dec 2004 00:00:00 GMT Nancy- Can you send me info on the nutritional things you did to help your brother in law? I have stomach cancer (stage 4) a total gastrectomy, obstructions after chemo (carbo platin and taxol) and tumor is now massive in my digestive system shutting down food intake. Surgeon who did "bypass" in Nov of '04 gave me a few weeks to a few months to live. Weight down 1/3 since diagnosed, and that (in conjunction with compromised digestive system), is a big issue for me. Losing energy and strength. TR Atrand Thu, 16 Dec 2004 00:00:00 GMT Dear Cheryl- I find pure foods(no additives- for eg. unprocessed natural peanut butter on crackers with banana slices and pure honey- or other pure fruits, veggies etc.) are tolerated by my compromised system. Also, look at carnation instant breakfast if boost and ensure don't work. Finally, "Prosure" has less sugar than Ensure and may be better tolerated than Ensure- by the way butter pecan flavor isn't half bad. Don't give up- keep praying and trusting in God. TR Atrand Thu, 16 Dec 2004 00:00:00 GMT Donna - I will be glad to correspond with you regarding nutritional help for fighting cancer. Nancy Nancy C. S. Fri, 17 Dec 2004 00:00:00 GMT Dear Lynne, There are so many new drugs out, there is something for everyone. I went to all the doctor's appointments with my mother. I contacted the Cancer Research and received all information on these new clinical trials and what they are using. They sent me a LOT of info. I took this info. to the oncologist. They (at first) said they couldn't do radiation and there was no new medicine. I showed them all the information I had and they changed their whole attitude. I kept asking, "why not radiation." I insisted to speak with a radiologist and they went ahead and did the radiation. The treatment my mother is on is what the doctor saw on the clinical trial. It is a drug for breast cancer that they are using on stomach cancer patients now. She will receive her last round next month. My mother is only 56 years old. She was diagnosed 2 years ago and it is amazing to see that in a matter of 2 years the new stuff they have. They have given her a pill that helps increase appetite. She has gained 8 lbs and they give her medicine to help with the nausea that works very well for her. My point is, it is going to be up to you to do the reasearch and don't give up!!!! Let me know how things go. (I can't remember what the drug my mom is taking, but I will ask her and let you know). Stay strong and God Bless. Mirat Mon, 10 Jan 2005 00:00:00 GMT I have been fighting colon cancer for 6 years now. Would like some nutritional information from you if that is at all possible. God bless you and your family. Polly57 Mon, 10 Jan 2005 00:00:00 GMT Hi Eileen - If you will send me a message with all your particulars. Meds - diet - nutritients I will be glad to offer some recommendations. Blessings! Nancy C. S. Tue, 11 Jan 2005 00:00:00 GMT I have colon cancer mets to the psoas muscle and again to the bone. Am taking nothing right now except morphine pills for the pain. I take 2 (60mg) pills every 12 hours, they are a slow release pill. I also take modified citrus pectin pills which are supposed to slow tumor growth. I also try to eat healthy and watch my sugar intake. I am mainly a vegetarian. Hope this helps. Polly57 Tue, 11 Jan 2005 00:00:00 GMT Please let me know how you helped your brother in law survive the cancer so I can help my mom. Thank You. Thunder Tue, 01 Feb 2005 00:00:00 GMT Anyone wanting information re: nutrition while battling cancer please let me know. I will be glad to assist anyone who writes. I will need specifics regarding your needs. BGU, Nancy C. Nancy C. S. Wed, 02 Feb 2005 00:00:00 GMT I have stage IV stomach cancer; just finished a 9 week chemo treatment of cisplatin, epirubicin, and 5-FU. The main tumor in my stomach feels like it is still growing. I am taking Nestle Nutren 1.5 through a J tube for nutrition and am maintaining my weight. What nutrition do you recommend? Thanks, Nancy. BobA Bobaa Tue, 15 Feb 2005 00:00:00 GMT What kind of a diet do you recommend for esophageal cancer? Also what chemo treatments have you seen successful for stage IV, lymph nodes, liver and lungs? Any info would help. Thanks, Chad Chad t Wed, 23 Feb 2005 00:00:00 GMT Hi, I just read your message about your brother-in-law. My very good friend was just diagnosed with stage four esophageal cancer. He will begin a clinical trial at Fox Chase tomorrow but we would be very interested in hearing what you did. Doctors are not very optimistic and we would appreciate any advice you could give. Thanks. Also, I think he would love to correspond with any survivor. Would you or your brother-in-law be interested? Deboe Mon, 28 Feb 2005 00:00:00 GMT Hi, Nancy: I need your advise. My dad was diagnosed with EC back in June, Had an esophagectomy back in July. Developed severe back pain in October, he has been getting checked by numerous Drs. and have found nothing but arthritis. last week a nuerosurgeon found a huge mass on his back. Did an MRI found the mass on his spine and a nodule on the lung. We had a pet scan done early this week and the pet scan revealed 3 spots 1 on a lymph node under his arm, the pelvis and stomach. They do not know if it is the cancer coming back maybe or it can just be an infection. Please any advise you may have. Thanks, Nelly Nelly Fri, 11 Mar 2005 00:00:00 GMT Nelly- I am not a Dr. but I do believe that the human body has an innate ability to heal itself if given the proper circumstances. I tell everyone who asks that 'what we put into our bodies becomes our body.' Healing food, using food as medicine, is the best way to go. Nancy C. S. Fri, 11 Mar 2005 00:00:00 GMT Hi, I'm new to message boards, but am so heartsick I'm looking for any help. Can you tell me what you did to help your brother-in-law. My brother, age 41, non-smoker, non-drinker, was just diagnosed with esophageal cancer that appears to have spread to his liver but the biopsy of the liver was just done today, 3/11 and we'll get the results Monday. The doctor's are acting like there's not much hope. I will thank you from the bottom of my heart if you have suggestions. Thank you, Chris Desperate Fri, 11 Mar 2005 00:00:00 GMT I would like to have details of his current diet. To give you an idea I had my brother in law do particular juices daily. Plus adjusting his diet. Avoid all refined food. Eat whole grains. NO SUGARS plus other things to avoid. He took a few supplements. Whole food supplements are best. Organic food is best. I believe that the human body was so designed to heal itself when given the proper fuel. Think of the body as a machine. It needs the PROPER fuel. If you put 'any old' fuel into it it may run but will not run effeciently or smoothly. Will need corrective mantenance and even new parts. There is much detail to dietary changes that is why one on one contact is necessary. Look forward to hearing from you. Nancy C. S. Sat, 12 Mar 2005 00:00:00 GMT Dear Nancy, I have a close friend with esophageal cancer. He is having a very difficult time keeping things down and therefore getting the nutriton he needs to stay on chemo and fight the cancer. I would be greatful for any advice you can give me. Bruce Bruce1 Mon, 14 Mar 2005 00:00:00 GMT Can you please also send me what nutritional advice you gave your brother. My Dad was diagnosed in January, 2004 with Esophageal Cancer. Thanks, Denise Deniselongo Fri, 22 Apr 2005 00:00:00 GMT Dear Nancy, I was hoping you would be able to give me nutrition advice for my father. He is stage iv (spread to liver, lungs, and some lymph nodes). he takes some nexium and is on s-1 and docetaxel. he is doing very well on treatment, and is eating mostly veggies, tofu and some fish, very little meat. his nutritionist told him not to drink mixed juices (that my mother was making daily) because they can be hard on the liver. Thanks, Cathy Chc27 Wed, 27 Apr 2005 00:00:00 GMT I would not disagree with his nutritionist though I do not recommend the same. I am assuming that his adviser has explained to him about the importance of getting all sugar out of his diet. And to eat foods high in nutrients. There is a company called Garden of Life that carries whole food products especially good for bolstering the body during its battle with cancer. Also - a company called Standard Process - also whole food supplements. I do not recommend synthetic supplements. If you need more suggestions please contact me. Blessings and peace, Nancy Nancy C. S. Fri, 29 Apr 2005 00:00:00 GMT I would be interested in hearing what you did for your brother-in-law. My partner has just been diagnosed and it has spread to his liver. We still don't know what path to take (i.e., radiation, chemo) - still waiting for the doctors to meet with us. I would be interested in diet information. Sharonspirit Fri, 29 Apr 2005 00:00:00 GMT I have helped many people by advising on diet and nutriton. It is useful to eat mindfully whether or not a person decides to go with the conventional treatment or with alternatives. Getting all sugar out of the diet is foremost. A little raw honey is ok. Eat fruits and vegetables. Organic when possible. All prepackaged food should be avoided. There are many many things to avoid and many to eat daily. It is important to have a nutrition consultant. There is probably one near you. If you are unable to find one let me know. ncs@nancysonnier.com Please put 'cancer compass' in the subject line. Supplements are important but should be whole food supplements. Try to avoid all synthetics. Good company is Garden of Life. Or Standard Process. Most healthfood stores can show you what is being used to boost the immune system. Your best weapon is knowledge. Read read read. Blessings and Peace, NCS Nancy C. S. Fri, 29 Apr 2005 00:00:00 GMT Nancy - From what I've read, you assisted your brother-in-law with a guide on nutritional supplements and diet when he had esophageal cancer. My mother-in-law was just treated with chemo and radiation and unfortunately, we were told that there is nothing else that can be done. Any guidance or assistance would be very much appreciated. Thank you! Kellie Kellie Tue, 09 Aug 2005 00:00:00 GMT Hi, I would be interested in the nutritional information that you were able to share that could help with this type of cancer (esophagus)and any other alternative treatments that you have heard of for people whose cancer is inoperable. Thank you Omshanti Wed, 28 Dec 2005 00:00:00 GMT Just found this site today - wow! Jan '05 my brother (age 51)was diagnosed with s.IV adeno EC. Started in stomach, metast'd into esoph, lymph, plus many nodes all around area. 1st rad did nothing. Several cycles of chemo stopped growth but when it came back, it had spread to liver, kidney, and bone (shoulders, spine, hip). (I'll withold my ire for the med and insur systems for another discussion...) Just finished a round of rad for pain mgmt only. Prognosis is another month, tho he has outpaced all predicitons, so who knows? Pain is the current issue, otherwise he's struggling but managing. He recently moved in with us in NC (from MD) and I want to help him every way I can. A key area of importance to him is nutrition. He has limited but adequate ability to eat by mouth, with lower-intestine feeding tube as backup. He'd like a diet for enhancing further treatment and Q-of-Life. Has a terrible sweet tooth, and trouble getting sufficient hydration (water doesn't go down). Also needs to rebuild strength - mobility - endurance, etc. I would love and so much appreciate any direction you can offer. Also, recommended reading would be great, as would advice on finding a "focused" local specialist. Thank you - all of you - so much. Cynforray Tue, 03 Jan 2006 00:00:00 GMT Hi, My husband will be going through chemo as a followup treatment to the esophagectomy/thoracotomy he recently had. What did you find that was successful for nutritional supplements for your brother-in-law? Thanks Terry Teemarie Wed, 23 Aug 2006 00:00:00 GMT Please send me some information on this type of nutritional support. My husband has gastric adenocarcinoma. Thank you so much. Hpatricia Sun, 12 Nov 2006 00:00:00 GMT  On 2/17/2004 Nancy C. S. wrote:Donna - I would be glad to let you know what I did for my brother in law when he was battling Esophegeal cancer. I helped him to keep his body strong and we adjusted his diet to rid it of all things that fed the cancer and weakened his system. email me if you would like details. Nancy S.Nancy - I know this post is old...however, I would really like to know your opinion on nutrition and supplments for this disease.  I hope your brother-in-law is still doing well.  My dad has been battling this disease for 2 years with chemo and radiation.  Now his body, which was so strong at the beginning, has been reduced to almost a shell - however, he has a strong will and I was able to convince him to try zeolite drops (a detox) - which he started a few days ago.  I'd appreciate any advice...  Thanks Nancy, Toni  -- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Antonette Mon, 18 Dec 2006 00:00:00 GMT