CancerCompass message board discussion started by reoking on 11/19/2007 http://www.cancercompass.com/message-board/message/all,18096,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Looking for any stage 4, stomach cancer survivors.  Any helpful information you'd be willing to share would be appreciated.   Thank you and God bless! reoking Mon, 19 Nov 2007 00:00:00 GMT I am only a short term survivor so far.  When first diagnosed, I was given a 10% chance of survival.  After chemo, surgery, radiation and more chemo I am now told I have a 30% chance for survival.  My plan is to be one of those three out of ten that makes it. Best wishes, Tom LabGuy Mon, 19 Nov 2007 00:00:00 GMT  On 11/19/2007 LabGuy wrote:I am only a short term survivor so far.  When first diagnosed, I was given a 10% chance of survival.  After chemo, surgery, radiation and more chemo I am now told I have a 30% chance for survival.  My plan is to be one of those three out of ten that makes it. Best wishes,tomtom...way to go!!! you have a strong will and reading this makes me have some hope about my dad. i have all but given up the thought that he will beat this, or at least get another year. so thank you!!when were you diagnosed and what with? any spreading? where are you getting treatments from? i wish you all the best and will keep you in my thoughts. kris lippygirl Mon, 19 Nov 2007 00:00:00 GMT I was diognosed with stage 4 stomach cancer June 8,2007. Was also told it was in-op. After 5 rounds of chemo i will having surgery in Dec. The last pet-ct showed the cancer to be in remission. I have been drinking aloe vera juice and changed my diet to about 95% oganic. it's hard to be 100%. I dramaticaly increased my intake of fruits and veggis. When it became painful to eat I used the morphine to continue eating. Nurishment is a key. Even when it tast bad and hurts. I was seen at Stanford they have a clinical trail going on. you may want to inquire. Good luck markc Mon, 19 Nov 2007 00:00:00 GMT I'll add to this.  My father was diagnosed July 2007, was operated on July 10 to remove 70% of his stomach and a whole bunch of lymphs that were cancerous.  He's been doing some intense chemo and so far his last cat scan came up clean.  He has 2 more rounds of chemo to go, then we go in for another scan.   If that's clean then he gets to stop chemo and we just monitor him with periodic scans.Stay positive and have some sort of faith.  People CAN beat this. Steeda Wed, 21 Nov 2007 00:00:00 GMT I love to add some encouragement to this site. I am so lucky to be able to share this with all of you. I was diagnosed with colon cancer in 2003, I did the chemo regimen and did fairly well. eight months later I was diagnosed with colon cancer again with mets to the stomach Stage 4. last time Stage 2. I had surgery once again, removed half my stomach, total of 37 inches of colon,  survived another,  yet long regimen of the worse chemo ever and I am here today to tell you all I am 1 1/2 years cancer free. I have a scan every 3 months. As  time goes on we will shoot for 4 months. My life will never be the same nor my body. lol!!  I have adjusted to all the conveniences this disease can bring but I m here and doing Quite well. I have a wondeful family and great friends. I have so much to be Thankful for. Hope  everyone has a Wonderful Thanksgiving. I know I will!!! Skittlebug Thu, 22 Nov 2007 00:00:00 GMT That's outstanding Skittlesbug!  Like I said, people can beat this! Steeda Mon, 26 Nov 2007 00:00:00 GMT Kris,Thanks for the encouragement.  I was diagnosed on Jan 2, 2007 with stage IV gastric/esophageal adenocarcinoma at Stanford (I work there).  I had three months of chemo, IV Carboplatin and oral Xeloda.  The first three week cycle was no problem.  In the middle of the second cycle I had severe hand/foot syndrome.  Xeloda also whacked my GI tract.  I had severe dehydration and my electrolytes dropped to panic levels.  I had to go into the hosptial for a few days and had outpatient IV's for a another week until my intestinal mucosa grew back.  My Xeloda dose was reduced by 25% for the third cycle (to 3000 mg/day).  The third cycle was not too bad.  The chemo didn't reduce the size of the mass but it did a good job on my lymph nodes and made me a candidate for surgery.  The lesson I learned was not to wait until you get really sick to get help.  IV rehydration and electrolyte replacement is much easier to deal with than severe dehydration.In May I had an Iver-Lewis gastrectomy/esophagectomy.  They removed most of my stomach, esophagus and 22 lymph nodes.  Four lymph nodes were positive but the surgical margins were clear.  No other metastaces.  I was discharged after nine days.  It took a couple months to recover from surgery.  The abdominal surgery wasn't to bad.  It was the thoracotomy that was rough.  My ribs hurt for six weeks.  Next I had five weeks of radiation with oral chemo.  Today I finished another two months of Carboplatin and Xeloda.  I had a PET/CT a couple weeks ago and they saw no signs of new disease.  My next appointment is Jan 7, 2008.  I am in the "watch and see" mode now. I can eat anything I want now, but in small quantities.  I occasionally have some acid reflux at night, even with the proton inhibitor I'm taking.  I have irregular bowel movements but I am waiting to see how my GI works after chemo.  The Xeloda is tough on the GI tract.  I lost 40 lbs but I had a lot of extra weight to begin with.  I walk regularly but sleep a lot.  My biggest problem has been fatigue.It has been a tough road but, overall, not to bad.  I look healthier now than before I was diagnosed.   Tom LabGuy Mon, 26 Nov 2007 00:00:00 GMT  On 11/26/2007 LabGuy wrote:Kris,Thanks for the encouragement.  I was diagnosed on Jan 2, 2007 with stage IV gastric/esophageal adenocarcinoma at Stanford (I work there).  I had three months of chemo, IV Carboplatin and oral Xeloda.  The first three week cycle was no problem.  In the middle of the second cycle I had severe hand/foot syndrome.  Xeloda also whacked my GI tract.  I had severe dehydration and my electrolytes dropped to panic levels.  I had to go into the hosptial for a few days and had outpatient IV's for a another week until my intestinal mucosa grew back.  My Xeloda dose was reduced by 25% for the third cycle (to 3000 mg/day).  The third cycle was not too bad.  The chemo didn't reduce the size of the mass but it did a good job on my lymph nodes and made me a candidate for surgery.  The lesson I learned was not to wait until you get really sick to get help.  IV rehydration and electrolyte replacement is much easier to deal with than severe dehydration.In May I had an Iver-Lewis gastrectomy/esophagectomy.  They removed most of my stomach, esophagus and 22 lymph nodes.  Four lymph nodes were positive but the surgical margins were clear.  No other metastaces.  I was discharged after nine days.  It took a couple months to recover from surgery.  The abdominal surgery wasn't to bad.  It was the thoracotomy that was rough.  My ribs hurt for six weeks.  Next I had five weeks of radiation with oral chemo.  Today I finished another two months of Carboplatin and Xeloda.  I had a PET/CT a couple weeks ago and they saw no signs of new disease.  My next appointment is Jan 7, 2008.  I am in the "watch and see" mode now. I can eat anything I want now, but in small quantities.  I occasionally have some acid reflux at night, even with the proton inhibitor I'm taking.  I have irregular bowel movements but I am waiting to see how my GI works after chemo.  The Xeloda is tough on the GI tract.  I lost 40 lbs but I had a lot of extra weight to begin with.  I walk regularly but sleep a lot.  My biggest problem has been fatigue.It has been a tough road but, overall, not to bad.  I look healthier now than before I was diagnosed.   TomNice job with your treatment choices.  Could I ask who and where your surgery was performed?  My wife is in remission from Stage 4 diagnosed in March of this year.  She has been on chemo since then and is in remission.  At some point we may be looking at a similar procedure and I am interested to know how you are doing post surgery?  Keep the faith! Steve  momwithkids Tue, 27 Nov 2007 00:00:00 GMT Tom:Just for future reference, my wifes stage 4 was diagnosed while the two tumors (stomach and liver) were still only about 2cm in diameter.  Her initial chemo consisted of Epirubicin, Cisplatin, and 5-FU (delivered via pump continously).  This is the treatment that put her into remission with a complete response.  Currently she is taking the Xeloda (started at 5000mg/day but had to reduce to 4000 (round two) and now 3000 round three AND oxaliplatin as a maintenance dose for 6 months.  Then some testing and retesting - THEN if still clear may have to choose if she wants surgery??? momwithkids Tue, 27 Nov 2007 00:00:00 GMT i just got diognosed with cancer  1 month ago . its nice  2 hear  that u r doing so good and i hope it stays that way ..i was just wondering  if u can tell me how hard is it  to eat with out a stomach ,and is it possible 2 gain ur weight  back,im  going to have surgery on 12/27/07 and im a little nervous that if i have that surgey im never going to recover..they say im et stage almost 2 , and its very localise.it has not spread anywhere else, but they say its possible that when they start the surgery they might still have to take my whole stomach, atalo Fri, 21 Dec 2007 00:00:00 GMT my mother had her entire stomach removed 10/31/07.   she was stage 1.  the tumor was only 1 cm. in diameter, but because of the position of it in the stomach, they had to remove the whole stomach.   depending on the position of your small tumor, they will remove all stomach or partial.   my mom can eat anything she wants but in small quanities.   her biggest inconvenience is fatigue.   she'll feel great for a few days, then very tired another day, and she gets frustrated by that.   she has some acid reflux that's annoying to her.    she has some gas that's painful sometimes but it goes away.   she'll start chemo and radiation on 12/26/07.    we try to give her shakes packed with protein.   Whey protein is best, they say.   She'll have a shake in the morning.  We make it with water, but you can make it with milk.  I also add 2 tablespoons of almond butter for the fat.   You must chew your food very well.   Every now and again, she'll swallow a piece of something not quite chewed enough and when it comes back up she feels like she's choking until she regurgitates it.   This scares her when it happens, but it's not often.  anybody else want to chime in on this eating subject?   especially those with full gastrectomy? claudia1 Mon, 24 Dec 2007 00:00:00 GMT my mom's was localized too.   only spread to one lymph node which was removed.  tell your doctor to do everything he can to spare some of your stomach.  if not, it's o.k.   90% of one's digestion occurs in the intestinal area, so not having a stomach only poses some inconveniences.   vitamin B12 supplements for life.   my mom was already taking those by injection every now and again for fatigue, so that's no big deal.   laying on a bed that's about 10% raised at the head, so bile doesn't come up your esophagus in the middle of the night.   when your stomach is removed, that little flap between the stomach opening and the bottom of your esophagus is gone so if something wants to come up, there's nothing to stop it except gravity.    my mom is doing great.  it's just a process and learning to eat more timees a day, smaller portions.  claudia1 Mon, 24 Dec 2007 00:00:00 GMT Your story is amazing.    My mother had a total gastrectomy two months ago.  Stage 1 stomach cancer.   Do you suffer from a lot of gas?  If so, do you have some remedy for it? Also, do you get a lot of reflux (acid or bile reflux)?    Do you have any tips on managing it? claudia1 Mon, 31 Dec 2007 00:00:00 GMT I was just diagnosed myself and am scared to death.  How are you doing? RobynG Wed, 09 Jan 2008 00:00:00 GMT I wanted to respond so you would know that others have walked your path.  Dec. 19, 2006, my son-in-law was diagnosed with stage 4 stomach cancer.  It was confirmed on Dec. 22--our Christmas was a disaster.  He began treatment at the Mayo clinic with a 6% survival rate on Jan. 2nd.  Even the drs doubted that he would survive for surgery.  He did!  On March 13th they were able to operate.  They removed his entire stomach, 40% of his pancreas, his spleen, many lymph nodes, and 4" of his esphagus.  They attached his small intestine to the remaining esphagus.  It was a long road, but well worth the journey.  He has had three clear scans!  Our holiday was so much better this year.  It took until early Dec. for him to feel better.  He is eating, off all medication and gaining weight.  He is back at work part time.  It is really a credit to his courage and positive attitude.  You might check out carepages.com for other inspirational stories.  I hope that your journey is smooth and that next year you will be writing a survivor's story.  I know that miracles happen and that someone has to be in the survivor statistic.  It may as well be you.  Best of luck, I'll check back to see how you are doing.  Minnesotamom Mon, 21 Jan 2008 00:00:00 GMT  On 1/21/2008 Minnesotamom wrote:I wanted to respond so you would know that others have walked your path.  Dec. 19, 2006, my son-in-law was diagnosed with stage 4 stomach cancer.  It was confirmed on Dec. 22--our Christmas was a disaster.  He began treatment at the Mayo clinic with a 6% survival rate on Jan. 2nd.  Even the drs doubted that he would survive for surgery.  He did!  On March 13th they were able to operate.  They removed his entire stomach, 40% of his pancreas, his spleen, many lymph nodes, and 4" of his esphagus.  They attached his small intestine to the remaining esphagus.  It was a long road, but well worth the journey.  He has had three clear scans!  Our holiday was so much better this year.  It took until early Dec. for him to feel better.  He is eating, off all medication and gaining weight.  He is back at work part time.  It is really a credit to his courage and positive attitude.  You might check out carepages.com for other inspirational stories.  I hope that your journey is smooth and that next year you will be writing a survivor's story.  I know that miracles happen and that someone has to be in the survivor statistic.  It may as well be you.  Best of luck, I'll check back to see how you are doing. Did he have chemo/radiation prior to the surgery?  How about after?  I'm also planning on getting my 2nd opinion at Mayo in Scottsdale.  Thanks so much for the encouragement! RobynG Tue, 22 Jan 2008 00:00:00 GMT Yes, he had both chemo and radiation.  I wouldn't say it was easy, but he did pretty well.  I don't think that I told you he weighed about 200 lbs at diagnosis, but went down to 114 lbs.  He currently is at 145.  We were so grateful to have been seen at Mayo.  They were a fantastic team.  His doctors continue to be such a support.  The surgeon called this week to see how he was doing.  Life is getting back to a routine.  I can't stress enough how important having a positive attitude and a team that supported us was.  On the day of his surgery, there were over 700 hits on his care page.  He is willing to talk to anyone who needs to go through it.  There will be scary times but it is important to know that someone else got through the nausea and the burning feeling.  Please keep positive thoughts and know that others are thinking of you.  Keep asking questions.  If I can't answer, I will get him to respond.  He is an inspiring story and I know how much we needed one! Minnesotamom Wed, 23 Jan 2008 00:00:00 GMT  On 11/19/2007 reoking wrote:Looking for any stage 4, stomach cancer survivors.  Any helpful information you'd be willing to share would be appreciated.   Thank you and God bless! Hi there.. My name is michael I'm 47 trs old, just got diagnosed with stomach cancer 3 weeks ago. Starting chemo next week. Can you pls give me any tips on helping with the side affects?Thank you! God bless mikeb777 Fri, 25 Apr 2008 00:00:00 GMT  On 11/27/2007 momwithkids wrote:Tom:Just for future reference, my wifes stage 4 was diagnosed while the two tumors (stomach and liver) were still only about 2cm in diameter.  Her initial chemo consisted of Epirubicin, Cisplatin, and 5-FU (delivered via pump continously).  This is the treatment that put her into remission with a complete response.  Currently she is taking the Xeloda (started at 5000mg/day but had to reduce to 4000 (round two) and now 3000 round three AND oxaliplatin as a maintenance dose for 6 months.  Then some testing and retesting - THEN if still clear may have to choose if she wants surgery???Hi tom, How old is your wife?.. I'm under going my first round of chemo next week, any good tips you can share with me?.. I have stage 4 stomach cancer and I will BEAT THIS!! mikeb777 Sat, 26 Apr 2008 00:00:00 GMT