CancerCompass message board discussion started by Akvmk on 5/21/2006 http://www.cancercompass.com/message-board/message/all,5431,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, I'm a new particpant in this message board, I posted something last night and it turned up in the general "Cancers" message board instead of here on the stomach cancer message board, under "post gastrectomy problems/gastric cancer journey". Most of it is about the journey and difficulties my husband has had since his gastrectomy last September. I'll just summarize and put my questions in here. He is currently having another digestive system shutdown with vomiting, hiccups, trapped gas (this time mostly from the endoscopy 3 days ago). Anyone else been through this? He has extremely alkaline stomach secretions with symptoms that are like overacidity but in his case its total lack of stomach acid. Has anyone had this and resolved it, if so how? Has anyone had any experience with zeolite (NCD)? I've seen some interesting anecdotal stories, understand that the claim about the study on stage 4 cancer patients is not true, but there are some personal reasons why we are drawn to try this, however if it is hard on the stomach, that wouldn't be good right now. Who are the really knowledgable stomach cancer oncologists in this country (excluding MD Anderson, we are with kaiser and can't afford the $41,500, but could see an independent specialist? Blessings to you all. Vivienne. Akvmk Sun, 21 May 2006 00:00:00 GMT Hi Vivienne, My father has stomach cancer and he has also had several bouts with hiccups. The odd thing is, his oncologist seems surprised by them. He has no explanation for why it's happening. What does your husband's oncologist say? As for good oncologists, I wish I could help you, but I'm having trouble in that area myself. I hope you will continue to search and eventually find one who meets your needs. We just started trying zeolite today, and I think anything that eliminates toxins is worth a try. I would be interested to hear how you discovered that the study done on stage four patients is a hoax. Take care, Patti James73 Thu, 08 Jun 2006 00:00:00 GMT Dear patti, I believe the hiccuping is related to irritation/ compromise of the vagus nerve, which may even be severed during stomach surgery. My husband's oncologist prescribed Thorazine, it can work but does cause drowsiness. Regrettably things are winding down for my husband rather quickly - the junction between his stomach and intestine closed off and caused multiple complications and severe pain, and he has just had enough and is ready to leave. I wish you and your father much luck on this challenging journey. If he can possibly do cesium, that would be my first choice - we did meet someone who healed from inoperable stomach cancer using that, but it is counterindicated when there is intestinal blockage, which was an issue for my husband all along. Vivienne. Akvmk Thu, 08 Jun 2006 00:00:00 GMT Dear Patti, I forgot to answer your last question. re The question about the supposed study on zeolite - I read on another stomach cancer message board somewhere about someone who had a phone conversation with the man who originally patented the formula before Waiora got involved, and this man said there was no such formal study done. That does not mean that the product doesn't work - I think there is some powerful anecdotal evidence, and time will tell. We felt it was worth a try but were late in starting up with it, so I couldn't say whether it had any beneficial effect for my husband or not - he was only on it 2 weeks and during that time there were so many other complications. Vivienne Akvmk Thu, 08 Jun 2006 00:00:00 GMT Vivienne, Thank you for your response. I appreciate the insight. I am so sad to hear that your husband's condition is deteriorating, and that he is suffering. Is there truly nothing more that can be done? I would be torn between wanting his suffering to end and wanting to grasp at anything that might offer even the remotest of possibility for recovery. Such a brutal disease. May God carry you both through this difficult time. Patti James73 Sun, 11 Jun 2006 00:00:00 GMT Hi Vivienne I hope by the time you receive this your husband has mended. I was diagnosed with linitis plastica May 24th and have so many of the same symptoms, the burping, vomiting with over eating, etc. Because they feel that the cancer has spread, they will not do a gastrectomy on me, but I hope that they are wrong about the cancer having spread and the surgery can be done. It's been over 6 weeks of tests, biopsy's and Dr. visit after Dr. visit with no definitive treatment decided. I also had Kaiser insurance, but was fortunate enough to have Pacificare as a back up. I am very frustrated wtih Kaiser and believe that I am in stage IV cancer due to their not listening to my complaints that started over 15 months ago. But I can't stay in that angry mindset and move forward. I am meeting with an oncologist from UCSF on June 29th and hope that we can start some type of treatment soon. Do you have any experience with Essiac. It's an herbal treatment. Someone recommended it to me but I haven't ordered any yet? I will keep you and your family in my thoughts and prayers. Marlene Gilroy California Wed, 21 Jun 2006 00:00:00 GMT I came across your post as I was doing research into another subject. I am a neurotoxicologist, but have little experience in the area of cancers. I feel for those of you who have been fighting the long hard battles against cancer. I wanted to just remind you to be careful with what you try. Cancer is bad, but there are some treatments out there that are much worse. Anything that says that it "eliminates" toxins should be looked at with great skepticism. The reason is that "dose makes the poison." This means that anything is toxic if you get a large enough dose of it, including water, salt, vitamins, oxygen, etc. So then, what exactly in your body is toxic, and how would some chemical be able to recognize something as being toxic? Compounds that tend to be labelled as toxic have nothing in common except that they harm the body above a certain dose. Most likely, if something says it "eliminates toxins," it doesn't. If it did eliminate some chemicals that tend to be harmful, it would be more explicit as to what is eliminated. Toxdoc76 Tue, 25 Jul 2006 00:00:00 GMT Dear Marlene, I'm sorry I missed your message, my husband died on 6/20 and I have not kept up with e-mails. An herbalist friend feels there are better herb combinations than essiac, if you can work with a good acupuncturist who can do pulse diagnosis and either prescribe herbs from that or co-operate with an herbalist that can be good. My husband couldn't tolerate his herbs by mouth for long unfortunately. His inability to take anything by mouth prevented him from doing many helpful things. If you are within reach of the Bay area I can recommend KW Botanicals in San Anselmo for custom tailored herbal preparations integrating Western and Chinese herbs. I still feel the best option if he had not had intestinal blockage would have been cesium, carefully monitored. Good luck with your next steps. Vivienne. Akvmk Tue, 25 Jul 2006 00:00:00 GMT Dear Vivienne, I am so sorry to hear of your husband's death. My heart goes out to you and your family. What exactly is cesium? Im just now going to start exploring alternatives. Herbs etc. I have also purchased a juicer and will juice all my drinks during the week I have chemo. It is hard to eat much during those weeks, but I've read that with extracting the juice at home the enzymes are kept that helps the lymphatic system. Everyone has their theories. I'm just exploring anything that will give me a fighting chance. I am currently having an infusion of Cisplatin and Epirubicin which lasts about 6 hours one day every three weeks. I also take Xeloda by mouth for two weeks. I just completed my first round of treatment and this is my week off. I feel good. So I will take it one day at a time and pray for remission. I don't know you but you are in my prayers. -Marlene P.S. Yes, I live in the bay area. Gilroy... Gilroy California Wed, 26 Jul 2006 00:00:00 GMT Yes, what you say makes sense. Thank you very much for the insight. James73 Thu, 10 Aug 2006 00:00:00 GMT Dear Vivienne, I am so sorry to hear about your husband. I am new to this board and looking for some information for my terminally ill uncle whom we are trying to take care of. He already had a total Gastrectomy and at the moment is in a nursing home. HE was due to get out today but began to run a fever and has now admitted that he has no feeling in his right arm and the Doctors have said that this is part of the final stages. Did your husband or anyone else have these symptoms towards the end? This is new to us and we were never told this before and we just feel like they are just saying anything so that they can send him home. Can anyone help me with some info on the symptoms he may begin to develop once his time gets near to the end? We want to be aware when they happen and the truth is it has all happened so fast and we have had so many questions that I have not found much info on this type of question online. Thank you to all! Sylvia Sylviam Wed, 16 Aug 2006 00:00:00 GMT Dear Sylvia, By now I imagine things have moved on one way or another. I was not familiar with the symptom you spoke of. I wish for a gentle transition for your uncle. With my husband, I felt there was invisible holding during his passing and definitely a movement out of the suffering of the body, spending more and more time "on the other side". I am signing off these web conversations now, I send well wishes to everyone dealing with cancer, their own or their loved ones. It is a hard journey - be as kind to yourselves as you possibly can, and share all the love you possibly can. Vivienne. Akvmk Wed, 23 Aug 2006 00:00:00 GMT I am so sorry to hear about the loss of your husband.  I pray that God give you the strength you need to move forward.  I also pray that many memories were shared that can comfort you through those tough days.  My question for you is what you feel is the best treatment? My dad had his stomach removed and part of his esophagus. 14 out of 20 lymphnodes tested positive for cancer.  He is not eating well at all.  Feels like everything gets stuck and has went thru one round of chemo - got very naseaus on top of feeling blockage he's losing a lot of weight fast.  In 2 months he's lost over 40 lbs.  We live in the bay area and the only insurance we have is kaiser.  We are desperate for anything.  I saw you recommending something to someone here just curious what it was and where I can find out more about alternative treatment for my dad. Thank you so much and God be with you. Jmaviles35 Sat, 02 Jun 2007 00:00:00 GMT