CancerCompass message board discussion started by Jockey on 2/28/2008 http://www.cancercompass.com/message-board/message/all,21434,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My son was diagnosed with stomach cancer stage 4 in mid December.  He is only 36.  In the last 6 mionths he has lost 80 lbs.  He has lost of nausea and cannot eat.  He vomits when we insist he eats.  He drinks ensure but not much else.  The Dr. gave us a prognosis of 6 months - 1 yr at diagnosis.  He was put on a clinical trial but was removed after 2 rounds since it was not working and the cancer continued to spread.  He is now on a new regimen of 5-FU, Cistaplatin and something else..  The effects of the chemo have weakened him a lot.  He is extremely tired all the time.Can someone who has been through this or a loved one tell me what to expect?Thanks.Jockey Jockey Thu, 28 Feb 2008 00:00:00 GMT  On 2/28/2008 Jockey wrote:My son was diagnosed with stomach cancer stage 4 in mid December.  He is only 36.  In the last 6 mionths he has lost 80 lbs.  He has lost of nausea and cannot eat.  He vomits when we insist he eats.  He drinks ensure but not much else.  The Dr. gave us a prognosis of 6 months - 1 yr at diagnosis.  He was put on a clinical trial but was removed after 2 rounds since it was not working and the cancer continued to spread.  He is now on a new regimen of 5-FU, Cistaplatin and something else..  The effects of the chemo have weakened him a lot.  He is extremely tired all the time.Can someone who has been through this or a loved one tell me what to expect?Thanks.Jockeywe have son with stage 4 different type of cancer. trying off label stuff but science. if you would like to chat, email: --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . where are you located? I wish you the best,it is very tough with a child. 32543 Thu, 28 Feb 2008 00:00:00 GMT I am very sorry to hear that your son is so sick. I am concerned about them putting him on a clinical trial BEFORE using 5-FU and Cisplatin.  It does seem from what you are telling us that your son is getting very sick, very fast. Does he have a feeding tube, and where is he being treated? This disease is horrible, I watched my father deteriorate in a short 7 months. I cannot tell you what to expect as everyones situation is different. If they are giving him a prognosis of 6 months, then it does not sound like they are hopeful, and it could be longer than that, or shorter. Does he have mets? Where has it spread? Kristennyc Thu, 28 Feb 2008 00:00:00 GMT We are in Dallas, Tx.The Dr. originally suggested the cocktail as an aggressive treatment. did not seem tohave much hope, though.Then called a day later and said he would be an excellent candidate for a clinical trial..  that did not seem to work.I think it has spread to the liver.. they say it is all over his stomach..Tehre is some fluid that accumulates in the stomach.. He has been drained twice..  First time they took out 3 litres.. 2nd time 8.25 litres..  His stomach is swollen again.. meaning more fluid is accumulating..  A dr. friend tells me that means liver is not functining well.. Dr. is a christian and seems very nice..I wonder if it is worthwhile to contact MD Anderson in Houston, Tx.What do you think? Jockey Thu, 28 Feb 2008 00:00:00 GMT I strongly suggest you contact MD Anderson. They are a great hospital. Runabout Thu, 28 Feb 2008 00:00:00 GMT Jockey,If you are in Dallas, have you taken him to MD Anderson in Houston for an evaluation? MD Anderson is ranked the number one cancer center in the country by US News and World Reports.Rick rick51 Thu, 28 Feb 2008 00:00:00 GMT Will check them out after the next Scan in a few weeks..  Thanks, Rick Jockey Thu, 28 Feb 2008 00:00:00 GMT  On 2/28/2008 Kristennyc wrote:I am very sorry to hear that your son is so sick. I am concerned about them putting him on a clinical trial BEFORE using 5-FU and Cisplatin.  It does seem from what you are telling us that your son is getting very sick, very fast. Does he have a feeding tube, and where is he being treated? This disease is horrible, I watched my father deteriorate in a short 7 months. I cannot tell you what to expect as everyones situation is different. If they are giving him a prognosis of 6 months, then it does not sound like they are hopeful, and it could be longer than that, or shorter. Does he have mets? Where has it spread? after they tried at Sloan Kettering the radiation and surgery(chemo was done earlier at another good hospital), they has nothing else so we tried folfox(oxaliplatin, leucovorin and fluorouracil(also called 5Fu) ) and avastin(all normally for colon cancer). He does not have colon cancer. he has metastatic testicular cancer to the bone. This chemo seemed to control the cancer but he does not want to continue since he feels so bad. I should also mention that we are trying a lot of things that are not normal cancer medical protocols. most are what are called off label(but so was the use of folfox and avastin). OGF, low dose interferon, buphenyl and artemisinin. We will probably look at Germany soon for another anti cancer treatment. He has time but they do not know how much and the first negative step will be paralysis.We are close so we are willing to try things as long as they do not hurt him. We thought that the folfox/avastin would not hurt but it did.If you would llike to chat re the Drs. we are using and the off label protocols, give me a call 917 295 4699. All the Drs. we are using are US oncologists. 32543 Thu, 28 Feb 2008 00:00:00 GMT Hi neighbor in DallasMy father-in-law is at MD Anderson at this moment.  He went for tests on Monday and Tuesday to see about getting into their clinical trial.  MD Anderson is the best hospital and a relatively easy drive from Dallas.  We drive up and back in one day.I recommend talking to Dr. Ajani (sp) in the Gastric dept.Thoughts and prayers are with you.Karen   DallasTX Thu, 28 Feb 2008 00:00:00 GMT Thanks KarenWill send infor to his wife to contact MD Anderson.Please let me know how your Father-in-Law's visit goes.Why is he there?  Does he have stomach cancer also?  Jockey Thu, 28 Feb 2008 00:00:00 GMT While your son or his wife is at MD Anderson, have them ask about oleander extract.  A very noted MD Anderson researcher named Robert Newman has led and participated in several studies about oleander.  There is a patented medicine you can obtain from Honduras via FDA exception rule and there is also a dietary supplement form available from South Africa.My own uncle had his brother in law make the same inquiries about oleander and came away very impressed - after which he began taking the medicine and is now cancer free.If you would like more information, send me a private message.  I have nothing I wish to sell you except hope. Dquixote1217 Thu, 28 Feb 2008 00:00:00 GMT Thank you very much.  We shall definitely ask about Olender.I appreciate you. Jockey Thu, 28 Feb 2008 00:00:00 GMT Will call you to talk.  Not tonight.. I have Bible Study  (BS) tonight Jockey Thu, 28 Feb 2008 00:00:00 GMT Yes, Stage 4 Stomach.  Inoperable.  Spread to the peritneum?, but not the liver, which I hear is good.He does not have any symptoms.  They found it because of gall stones, so it came as a huge surprise.I am still learning what to expect.... DallasTX Thu, 28 Feb 2008 00:00:00 GMT  On 2/28/2008 Jockey wrote:We are in Dallas, Tx.The Dr. originally suggested the cocktail as an aggressive treatment. did not seem tohave much hope, though.Then called a day later and said he would be an excellent candidate for a clinical trial..  that did not seem to work.I think it has spread to the liver.. they say it is all over his stomach..Tehre is some fluid that accumulates in the stomach.. He has been drained twice..  First time they took out 3 litres.. 2nd time 8.25 litres..  His stomach is swollen again.. meaning more fluid is accumulating..  A dr. friend tells me that means liver is not functining well.. Dr. is a christian and seems very nice..I wonder if it is worthwhile to contact MD Anderson in Houston, Tx.What do you think? I agree that you should go to MD anderson. I would ask them about the main three areas: chemo, radiation and surgery. But I would also ask about cutting edge areas outside those three since it seems that your son needs something quickly and since chemo has not really worked. You need to try things which are not proven yet but which are from the scientific side of the house. I wish you good luck. 32543 Thu, 28 Feb 2008 00:00:00 GMT Thank you.  I will definitely ask.Jockey Jockey Fri, 29 Feb 2008 00:00:00 GMT Please update me on any findings, progress.ThanksJockey Jockey Fri, 29 Feb 2008 00:00:00 GMT I got it..  reading it now..  Will get back to you. Jockey Fri, 29 Feb 2008 00:00:00 GMT I got it..  reading it now..  Will get back to you. Jockey Fri, 29 Feb 2008 00:00:00 GMT hey,Point me to the page about Ensure..  Are you the patient? What cancer? Jockey Fri, 29 Feb 2008 00:00:00 GMT  On 2/28/2008 Jockey wrote:My son was diagnosed with stomach cancer stage 4 in mid December.  He is only 36.  In the last 6 mionths he has lost 80 lbs.  He has lost of nausea and cannot eat.  He vomits when we insist he eats.  He drinks ensure but not much else.  The Dr. gave us a prognosis of 6 months - 1 yr at diagnosis.  He was put on a clinical trial but was removed after 2 rounds since it was not working and the cancer continued to spread.  He is now on a new regimen of 5-FU, Cistaplatin and something else..  The effects of the chemo have weakened him a lot.  He is extremely tired all the time.Can someone who has been through this or a loved one tell me what to expect?Thanks.Jockey Dear Jockey, Two years ago, I was diagnosed with Stage IV stomach cancer that had spread to the ovaries.   I asked my doctor not to tell me anything negative and stated that I am not a statistic or number.  I requested that he did what he knew best and that I'd take care of the rest.    PROGNOSIS are a doctors devise to cover themselves against lawsuits.   It is not up to them to "grant" life terms.Stomach cancer is considered incurable but can be kept at bay.  Someone I know of personally was diagnosed with the same illness 18 years ago in Guatemala.   Her doctor "gave" her sic months.  She went home totally demoralized.    Her sister reminded her that it was a human being not G-d who was giving her such forecast, and encouraged her to fight.Chemo then and there was even more toxic and aggressive.   18 YEARS LATER, she is ALIVE AND WELL.   I also know of someone who three years ago was "given" two weeks after being diagnosed with the same illness.  He currently has decent life.My own approach has been to try to find as much stress relief as possible.   My own spiritual approach (i.e. G-d and Jesus) has been a pillar.  Reflexiology has helped me tremendously to flush away toxicity from chemo; acupuncture has enabled me to cope with nausea much better that medicine that usually constipates me; nutrition is vital.  I understand that it is vital for your son to keep his weight on but instead of ENSURE, please look for the advise of a natural nutritionist.  For example; brown rice, black beans, nice guacamole, hummus (mashed chickpeas); fresh salmon with green beans; lots of broccoli; sprouted grains bread; almond butter.   Fresh pineapple has lots of digestive enzymes.  You son has to drink lots of fluids.  No soda or diet drinks.    No diary, however, goat milk products are very good.  I avoid the use of sugar as it turns into acid, something that cancer needs to reproduce.  A very simple remedy (an inexpensive as well) that helps to reduce acid in the body is to mix a teaspoon of baking soda in an 8 oz. glass of water.  This is the first thing to drink in the morning and 30 mins. should elapse before eating.  After two months of treatment, my tumors were tremendously reduced and I was able to undergo a partial gastrectomy and the removal of my ovaries and uterus.  Thank G-D I have not been bed ridden one single day, with the exception of the recovery from surgery.  Also, I because I've been able to do lots of detoxification, the chemo side effects have been minimal, and thank G-D I have LOTS of beautiful hair!!!!! The head of Integrative medicine at Memorial Sloan Kettering also prescribed a supplement that the Japanese government has researched extensively because stomach cancer is very prevalent in Japan.  It is "coriolus" and you can find the information in the website for "Mushroom science"  Of course, you need to research all of this by yourself and keep asking questions to the doctors.   Some doctors do not like to be questioned, but your son has to ensure that he is in charge of his treatment. My husband gave me the following book, which you may borrow from your library, but you can also read the excerpt at amazon.com.   You'll understand what I mean. Peace, Love and Healing : Bodymind Communication & the Path to Self-Healing: An Exploration by Dr. Bernie Siegel. PLEASE, PLEASE TELL YOUR SON NOT TO GIVE UP!!!!!! The road is long, and it requires hard work, but G-D is there to hold us along the path.I'll be happy to be in touch. Wishing you all the best in health, love,  light and wisdom..   REBBECA Thu, 06 Mar 2008 00:00:00 GMT Rebecca, Thank you very much for the encouragement and information.I will share the infor with him this evening..God bless you.Pls send me a private email with an email address.Thanks. Jockey Fri, 07 Mar 2008 00:00:00 GMT