CancerCompass message board discussion started by Salty on 3/29/2005 http://www.cancercompass.com/message-board/message/all,1802,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with linitis plastica cancer last November. I have completed three rounds of chemo. I have been unable to have surgery due to the size of the cancer, the three rounds of chemo has shrunk the cancer slightly, but not enough to operate. My chemo doctor said the only thing left now is to give me a low dose of chemo and radiation, and I guess it is just to prolong my life. Does anyone know of something I can do different, or where I can go for a second opinion? Thanks. Salty Tue, 29 Mar 2005 00:00:00 GMT Hi I also have the same cancer as you. I was diagnosed in Jan this year. So far I have had 4 sessions of chemo, and up for 5th on Monday. The treatment is Euporubicin; Cisplatin both in infusion every 3 weeks, andthen I take tablets Xeloda by Roche for the 3 weeks in between. I generally feel OK, although not strong to go to work etc. It is a rear cancer and have communicated via e:mail with a Japanese specialist, where this cancer is v common. He recons that they use the above regimen for a few months, so may be you should have more sessions. I also had a scan after my 3rd chemo and unfortunately the scans in our cancer dont really show much, as it is the tissue that is effected and there is no particular one tumour to measure. The Japanes Dr recons that after the above 6 chemos he would recomend paclitaxel and CDDP or paclitaxel and 5FU (or Xeloda) for a while, as he thinks that the above is good for peritonial spread treatment, and the ideal time of operation is 5-7 months after initial t/ment. So dont give up, I think 3 chemos are probably not enough and do get a second opinion if you can, as all specialists are different. The Japanese Dr who speciliases in stomach cancer also said that the best way to help yourself is to treat your cancer with confidence and eat very good food to improve your immune system. I personally have been eating according to my blood type, as I read about it and it seems to be helpful when one has cancer. Also I have been eating mostly organic. My Professor who is v famous here in UK said that the best way with this cancer is to judge how much you eat in one go, if you are eating increasingly bigger portions than the cancer cells are dying and giving more mobility in your stomach wall to be able to stretch. I know all info on the net is v negative about this cancer, but there are people that have been cured from it, so if there are others being cured, why not us??? Just hold on to this thought, pray, open your mind to spiritual meanings, try and eat good, get support from your friends and family and mostly believe ...in your strength and your god and your ability to fight this disease. I hope this advice helps you, I have learnt a lot in the last few months about myself, life and what really matters.. I have met many cancer victims while for treatment and they are all fabulour people, I am myself only 42, fit 42 always doing the 'right' things -diets; exercise and so on so on... but we dont know who chooses us and why.. just be strong and discuss diferent options with may be yours or another specialist. I pray for you to be strong. T Tutsi Sat, 14 May 2005 00:00:00 GMT Could you tell me the name and contact information of the Doctor in Japan to which you refer. Thank you Gerry Gerry Sun, 12 Jun 2005 00:00:00 GMT Unfortunately I cannot as I have only communicated via my company with him. through my product manager in Japan. But his opinion is very consistant with what my Drs in the UK are doing. I can give you details of my Dr in the UK, Professor Hawkins, Oncology Director, Christies Hospital, Manchester, UK. This hospital is one of the excellence centre in Europe. I have now completed 6 sessions of chemo, and will have a laporoscopy in July to see if the mets in the peritonial cavity have cleared, in view of truying to have the stomach surgery. Just be postive and try not to give up. Everyone is different, mainly get your body to fight. You need to eat well, try organic food if you can, and read about your blood type, following that regimen has helped me through chemo so far, instead of loosing weight I have gained 10 kg, in the Drs opinion this is an excellent sign for stomach cancer in particularly as it normaly shrinks when the cancer is growing and unables the person to eat enough food. How you feeling, what is going on with you at the moment. Please dont give up and keep up your strength. God bless and all the best Tatiana Tutsi Wed, 15 Jun 2005 00:00:00 GMT tutsi, how are you doing now? How did they diagnose your condition firmly? I MAY or may not have the same thing. Did they do a biopsy? You also mention a spread. I'll assume it's in your abdominal cavity and the chemo is to lessen that. What do your Dr's say about a surgery option? Please respond. Thanks and hope you're doing well. bob Hdhntr8bob Sun, 10 Jul 2005 00:00:00 GMT Hi, I am about to have a laporoscopy this week, to see if chemo has worked . If it has I will have the stomach removed. Thats what we are all praying for. The diagnoses came as a shock. I had nothing apart from a feeling of early satiety when I eat. This became worst, but as I have a good apetite I compensated by eating more often. Hence never lost weight, so they did not believe or suspected cancer. After further tests with biopsies it showed negative. Then two months later after no improvement, they did more speliased tests with a small camera attached to the equipment that goes into your stomach trhough the mouth, taking nearly 50 - 100 biopsies I was told. That is when they found the cancer, I still had not other symptoms and still dont to this day. The chemo as you say was exactly to hopefully clear the very few mets in the abdominal cavity with the view to surgery. I have had full 6 chemos since jan and they sometimes were really rough, but I finished them and I eat miles better. I have actually put nearly 14 kilos on since chemo, which all professionals think is amazing when you have cancer in the stomach and on chemo, so they say it is a really good sign that chemo has worked. But the only test to prove that is a camera operation - laparoscopy going from the outside to see if the mets have gone. I think I am having that done next monday. I have high hopes and pray for it. Let me know more about your condition, what they doing now, and what are you doing different, also what is your age. Thanks and may god bless you and all that you hope for goes your way. T Tutsi Mon, 11 Jul 2005 00:00:00 GMT Tatiana, thank you so much for your words of encouragement they meant so much to my mother. You were the first to respond to her message. Her screen name was salty. She did everything she could to fight this cancer,she loved life, but she passed away on July 17th, it was 8 mos. to the day that she found out that she had cancer for the second time. The first was ovarian cancer in 1982. She was cancer free for 23 years. She wanted to write you herself to tell you her treatment plans. She went to M D Anderson , a hospital in Houston, Texas. She spent two mos. there receiving chemo and radition. When she returned home to Georgia she had plans to return to texas to have her stomah removed on the 19th of July. She believed that M D Anderson had saved her once and they could do it again. She loved that hospital, but this time it was not to be.I read her your response to her message and she would often say to me,"please read me Tutsi letter again, don't lose it , when I get home I'm going to write her a nice long letter." I know that she would want to say to you don't give up! Never lose hope! Fight hard and stay strong! Thank you again, Bonnie, one of Jeanette's 3 daughters. Lacyclay Thu, 21 Jul 2005 00:00:00 GMT Hi there , I am so sorry about your mum's loss. All I can say is that I have no doubt she is somewhere good, very light very lovely and with no demands for appointments, bills, work and so on and so on. There is one thing for sure in this life, we are all going somewhere else. And you know what, we dont actually know whether that other place takes its best people from here first. You mother must have been a very brave and strong woman and obviously did fight the cancer for 23 years as it did not come back. We all have a chosen date and only go when the time has come whether we realise this in life or not. I am sure you and your sisters must have learned so much from your mum's battle. Cancer I have learnt so far is not just about suffering it is also about opening a spiritual path of learning. Learning things many of us never thought to spend much time on when life was OK and just thiking along. I use to think - oh is life all about just getting up, cooking, working , I use to think what is the point of this all, what do we mean as people. But through my cancer experience, I have learned that yes - we cannot be all remembered in history like Hamplet or Ahiless or Churchill, but we matter. We all matter to each other in our ordinary lifes. And now my life has turned up differently - hospital apps; chemo; ops; councelling; uncertainty of the future etc, all I want is that normal life I had before. I have learned that ordinary life does matter, at any one time we touch other people and they touch us.. sometimes we do not even know about it but there is a reason for every single however small human interaction we have with others. If we just follow the: love one another moto and enjoy the now, today this minute, life will be so much easier. We have no control of the past, it has gone- so should not worry about it; we have no control of the future - only god has, so should not worry about it. What we can do is enjoy today - the small things - the fresh air, bear feet on grass; blue sky; nice smell; the love of a child or a pet; the smell of nicely cooked dinner, the kindness to and from strangers. Your mum probably did not know, but I was also touched by her, the fact that although far away, there was another human being experiencing similar things to me, makes things easier. And now receiving your letter, has made me feel happy , that I managed to brighten at least some momments through her suffering. Well I best go now, thank you so much for sending me this note, it means a lot to me. May your mum be blessed in heaven, and just remember, there are so many relatives she has there already, from the 1000s years past, she will never be lonely and she will will be loved by them up there. All my best to all your family, be assured her spirit is alive, all she has got rid of is an old coat (the body that covered her soul on earth). Nothing else has changed..She is still the strong loving woman you know, just somewhere else, watching over you all.. Love T Tutsi Sun, 31 Jul 2005 00:00:00 GMT Hi there, my mum has been diagnosed with Linitis Plastica November 2005 and getting chemo she's just had her second dose with the tablets in between, she having quite a rough time with it going in and out of hospitals. I've noticed my mum has been eating slightly more so I was hopeful that it could be a good sign that the cancer may be shrinking but she's getting a lot of fluid. The doctor's drained 4 litres of fluid from he stomach before for the chemo started, and after the second chemo she's just had about 2.5 litres drained from her lungs the doctor has told us that it may be a sign that the chemo is not working. We're all very confused and hope there's someone that may be able to explain what's going on or any kind info that might help my mum. My mum has took the diagnoses really badly she's badly depressed and doesn't see any light at the end of the tunnel. My mum's 42 years old and has always been very healthy and exercised regularly. Balhar Wed, 25 Jan 2006 00:00:00 GMT Hi, I am very sorry for your mum. I was diagnosed at 42, just over a year ago, and look at me I am still here.. I have just been told I am in partial remission, that means I still have it, but it is not growing... So I can be with it for a short or a long time, god willing I hope for a long time. But one thing you should tell your mum is NOT TO GIVE UP. This cancer is nasty and difficult to treat, but there are people who survive it, there is no reason why she cant. The chemo will make her depressed and down and she has to fight that, it is good that she is eating more.. that is a sign of stomach streching again better and her able to eat. I am not sure why she has liquid in here lungs, you need to question these things. Have your self a list of Qs every time you see the specialist with her and ask everything.. because she needs to get control of this ilness. There is not much research on it, but it tends to affect slightly more women then men and at a younger age around 40. I also always eat well and excersize, but this things dont ask.. tell her to look at this as a very difficult challenge for her, but not impossible. I firmly believe that being very positive through the entire 12 sessions of chem is what has kept me going. As far as I know it is not a very fast growing cancer, and at least it could be sustained for a long time, so she should not give up. I know it is very hard, but she needs to control her body and her spirtit. Other things I have done apart from 12 chemos is travel to somewhere even locally to cheer myslef up (if she is strong enough physically that is). Go for walks in parks for good fresh air, have eat accodring to my blood group type and now eating only organic food as well as purified/or mineral water. I also drink tea made from galangal/fresh camomile and mint or green tea. But most importantly she needs to change her spirit and believe she can pull throug this. And for yourself, please be strong for her and help by being there, listening more to her rather than talking much. May god bless you both. Tutsi Wed, 25 Jan 2006 00:00:00 GMT I have tried 4 times to write a message to you. I keep getting kicked off. My mom had her stomach out yesterday at Oschner's Hospital in New Orleans. She was diagnosed 4 years ago and given 6-12 months to live. She was given chemo to help make her comfortable, but not for a cure!!! She has lived a great life the last 4 years. They recently found a mass in the inside of her stomach, making the doctors believe tht the cancer is growing. There is so much I can tell you. Just keep the positive attitude. I think that is why my mom is still living. God and a positive attitude!! I will email you more about her story in the next few days. I hate to keep writing and then lose all of it! Kaycc Fri, 10 Feb 2006 00:00:00 GMT Hi thank you so much for your message. It has arrived. Yes please tell me more if you can. I could not have my stomach taken out, as in the UK they will not do the operation if there is any of the cancer to be seen outside the stomach walls in the peritonium. That is my case. I am so happy your mum still here after 4 years, it gives me great hopes. I finished my last chemo in DEcember and the results are just the same - not moved either way. So they called it partial remission.. I can eat not very comfortable and have to watch foods, as I get much acid, and heartburns of lately, but could eat a reasonable amount, so I am happy andd greatful for that. I am starting injections - monoclonal antibodies in march and there is some hope that these may work. i drink eissiac tea at the moment, take probiotics and Q10, as well as pray all the time. I think God is what keeps me going, as well as positive attittude, but of lately i think I might be loosing the latter, things are getting me down, so i was very happy to hear from you. IF you want to write to my email directly it is: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thanks for getting in touch. T Kaycc Fri, 10 Feb 2006 00:00:00 GMT Hi thank you so much for your message. It has arrived. Yes please tell me more if you can. I could not have my stomach taken out, as in the UK they will not do the operation if there is any of the cancer to be seen outside the stomach walls in the peritonium. That is my case. I am so happy your mum still here after 4 years, it gives me great hopes. I finished my last chemo in DEcember and the results are just the same - not moved either way. So they called it partial remission.. I can eat not very comfortable and have to watch foods, as I get much acid, and heartburns of lately, but could eat a reasonable amount, so I am happy andd greatful for that. I am starting injections - monoclonal antibodies in march and there is some hope that these may work. i drink eissiac tea at the moment, take probiotics and Q10, as well as pray all the time. I think God is what keeps me going, as well as positive attittude, but of lately i think I might be loosing the latter, things are getting me down, so i was very happy to hear from you. IF you want to write to my email directly it is: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thanks for getting in touch. T Tutsi Sat, 11 Feb 2006 00:00:00 GMT Hi, My father was diagnosed in January 2005 with Linitis Plastica. Since this is a rare disease with a poor prognosis and relatively little information to be found, I hope to share his experiences to help (and hopefully to be helped by) others. Starting in October 2004, my father had severe stomach pains and was unable to eat as he normally would. Granted, he wasn't necessarily a small man so it was pretty odd when he wouldn't finish his dinner. Over the next 3 months he met with his physician about 4 times complaining about digestive issues before his physician scheduled an appointment with a gastro-specialist for mid-March 2005 (Note that this was in January after he had lost 50 lbs from not eating and March would have been 5-6 months after his initial complaints!). However, my angelic mother took matters into her own hands, and nagged the physician and specialist until they could take no more and had the appointment moved up to the following week. This was a critical time savings when possibly dealing with a cancer that has a prognosis of 6-12 months. Anyway, after the biopsy came back positive, the following 2 weeks of January were dedicated to finding the right team of gastric oncologist, radiologist, surgeon, and chemotherapy cocktail. Officially, we had two real opinions, but we met with 6 different doctors from 5 different hospitals. The first oncologist was reading the CT-scan upside-down and diagnosed him as a stage 1 ardenocarcinoma (it wasn't until they met with a potential surgeon (a.k.a. SurgeonA) a week later that she told him that she knew it was linitis plastica from the thickened stomach walls seen in the CT-scan and typically that is a stage 4). Unfortunately, one of the drawbacks we found in dealing with this rare cancer, is that it will not be in the forefront of the doctor's mind in diagnosis and an oncologist that does not specialize in gastric cancer tends not to be knowledgeable of linits plastica. Additionally frustrating, in searching for an oncologist, was that a couple of them (from Dartmouth & Dana Farber) also wrote my father off since he was too far along to qualify for their clinical trials. The oncologist at Dartmouth actually told my father that he had about 6 months to live and that if he were him he "would get his life matters in order". That was not something that my father, my mother, or the rest of us kids were going to believe. Finally, it was the surgeon that originally diagnosed my father correctly, SurgeonA, that referred us to a good oncologist. This oncologist did not specialize in gastric cancer, but he got along well with my father and he believed (still does) that my father would/will survive. It also should be noted that SurgeonA had a background in gastric cancer and also inspired and believed that my father could beat this. So the team was set. I'm not recommending or discounting this, but my father decided he wanted to aggressively attack the cancer and try not follow the protocol that any one hospital would typically have set up - so things got done a bit quicker than normal. His treatment started in the beginning of February (remember the original gastric specialist appointment was supposed to be in March!) with taxotere and carboplatin for ~6 months with removal of the stomach as the goal. My father had a very good reaction to this cocktail - it significantly reduced the walls of the stomach so he was able to eat again (he actually looked and felt better than he did in a year!) and seemed fit to have surgery. Unfortunately, when they went to operate they found a tumor at the GE junction. This prompted the next cocktail to include radiation (targeted at the tumor) with 5-FU and carboplatin. After this cocktail, CT-scans over the period of 3 months showed that the tumor had been reduced, but that there were 4 small 5mm-8mm nodules in his lungs that appeared to be growing. Around Christimas he had a lung biopsy to find that the cancer metastasized. It's been nearly 18 months since my father's initial complaints. He started his latest regimen (now switched to CPT11 as a single agent), but seems to be having a harder time - he's lost 10 lbs since December, has severe balance issues, and has been so tired that he hasn't been able to work. They have discovered that he has a 4mm benign tumor in his middle ear (possibly the reason for loss of balance; though the ear doctor we saw doubts this size would have an affect) and, since his lung biopsy, his heart occasionally goes into atrial fibrillation (possibly the reason for more fatigue). If anyone has any information as to why he would have balance issues that would be greatly appreciated. So, from our experience with linitis plastica we've found: 1) Those 5-year poor prognosis' that you find all over the web do not take into account the recent advancements in medicine - the treatment is getting better all the time. 2) Take charge. Your fighting for your's or your loved ones' life. Assuming that the 5-year prognosis is accurate, even one month of time counts in the beginning of the process you will go through. 3) I think it can be important to have an oncologist and surgeon that you like and trust. Most of the doctors that my parents' came across didn't express any emotion or were very pessimistic about the outcome. Unfortunately though, it is a rare disease which oncologists probably don't see as often as other gastric cancers and their basing their opinions on the 5-year stats which, again, don't take into account recent advancements. It was important for my parents to have someone that simply believes that anything can happen. Really, if you don't believe that it can happen then you've already shut the door to it possibly happening. People have been cured of this and one of the best pieces of advice my father received was when SurgeonA told him "don't let anyone turn your head to think that you can't beat this - I have seen people cured of this". 4) Doctors are not superhuman. Do all the research you can. Go prepared to meet with them and ask lots of questions. Sometimes the more you know the better you'll feel. Collect all of the CT-scan and biopsy reports and read them yourself. Monitor blood counts. 5) Try to have a note-taker come along in meetings with the doctor or ask if you can record the meeting to avoid miscommunication. There's been a few times that my parents' have had their weekends ruined because they heard or interpreted something that the doctor didn't say or mean. . Fordad Sun, 12 Mar 2006 00:00:00 GMT Hi Balhar, I got to know this site just a few days back. I wish to take this opportunity towish you the best. Perhaps the folowing will help. My wife passed away from 28 days ago (16th Feb) from linitis plastica. We did very well to prepare ourselves during her illness as well as after she passed away. I would like to share with you the preparations we made that equipped us the mental strength to deal with challenges while she was very sick and after she died. It is bad enough to suffer the symptoms of this dreaded disease. You have a choice of beating the confused state your mum (and you as well because you have no answers to her confusion) is going through. I suggest that you approach your doctors to recommend a motivator or physiologist from the same hospital your mum is in as he or she will access to first hand records of your mum medical history. If you are not able too, I will try my level best to help you from Malaysia. Please message me soonest. May you all be destined for better times now and in the future. Sincerely, ThomasTan1953 Tact Solutions Tue, 14 Mar 2006 00:00:00 GMT Do you know if Linitis Plastica is hereditary? Maeburr Fri, 28 Apr 2006 00:00:00 GMT hi i have done a lot of research and it is definately not hereditery. this is a strange and rear cancer, it affects 1 in 100000 people, are we not lucky ??? i have been suffering since january 2005. in my 17th months now, defeating the prognosis of max 16 months that i found in the latest and probably one of only 3 studies on this cancer. however in that same study 5%-10% people made it over 5 years (trial stops then so they may be still alive i hope) . that was irrelevant of stomach removal or not. in fact in linitis plastica as the tumours as so difficult to detect microscopic cells are often not seen and operation is performed only to return to other places. i am classed as inopperable, i am now on my third coctail of chemotherapy. i live in the uk and i am treated in a christies which is one of the top 3 european cancer centres. i see prof hawkins, who is one of two top stomach cancer specialists in the country. but this cancer is a nasty nasty cancer. i have now have mets in my bowel, which although not fully blocking are causing a kink which is preventing me from eating and i do i throw up bile all day. i have been in hospital artificially fed for the last 3 weeks(let me out for the weekend and back in tonights). the problem with this type of cancer is that it does not grow into a tumour upwards that can be easier detected on scans. instead it grows outwards into the tissue and only gets detetected on scans when is sufficiently tick. for example i started sicking bile back in jan. in feb the scan did not show cancer in the bowel. i got worst and worst and at the beginning of may after an emergency admission the scan showed the cancer in the bowel. yet my dr said it must have started building much earlier. going back to hereditory. my proff who does a lot of research has noted that in the last 5 years this cancer has been on the increase especially in women under 50, with no cancer in their family. (i am 43 and have no cancer in my family). he is almost certain that it is an enviromental cause but of course cannot know what. its still relatively very rear, i have not yet met anyone else with this type, yet there is plenty w the other stomach cancers. i just keep on praying that while i keep it at bay with chemo, a new treatment will come and kill it for good.my prof recons many new things are coming up. in fact he said if i keep you alive for the next 5 ys i will cure u. well so far i have made 17 months. praise the lord and his good work. good luck and special prayers to other sufferers. i do know quite a bit about this now, so if you have any qs ask please. as far as japan is concerned they are not better at treating this cancer, but they are very good at detecting any gastric cancers early, as it is their no 1 cancer killer. unfortunately for us in the west we get anti-acid tabs and wrong diagnosis for a long time before they find this horrible cancer. i was investigated for 5 months had all tests, several scans, two sets of biopsies before they found it, yet i was told it had been there at least for a 1 year. but past is past, now i just concentrate on trying to beat this monster with gods and drs help. lots of love to all of you. t Tutsi Sun, 28 May 2006 00:00:00 GMT There is more information regarding linitis plastica at the following link: http://www.cancercompass.com/message-board/message/all,3135,0.htm Administrator Wed, 14 Jun 2006 00:00:00 GMT Hello there- My mother has been diagnosed with linitis plastica, and is yet to start recieving treatment. She was diagnosed in the beginning of May, and has been going through hoops to try and find someone to start treatment, it is now June 26th; I feel like if her name was Lance Armstrong she would have been in treatment for a month already. I guess what I am asking is, did it take anyone else this long before they actually started getting some kind of treatment. I feel like the Doctors are just putting my Mom off because of the progression of the cancer. The Doc says that she is stage four, which is very far progressed. I am having a hard time, as well as others as I read, trying to find out more about this cancer. I feel that there should be a specialist out there, but I have yet to find one. I like what the doc in Japan has said about diet. I think that it is very important to be on a good organic diet, no GMO. Is there any type of food that has helped you along? Anything in general? The other question is emotional streangth. My Mother is having a hard time trying to keep her chin up so to speak, and having a tough time keeping possitve. Do you know of any forums, positive thinking cassetes or CD's, how do I help her believe that she can fight this. I hope this is not too much help to be asking for as I can't even imagine the battle you are fighting as of now. I hope your treatment is going well, and I hold you and all others here in my thoughts throughout the day, sending all the love and prayers I can. Take Care and Be Well and Good Luck Nate Natey Mon, 26 Jun 2006 00:00:00 GMT http://www.msfhr.org/sub-funding-recipients-profile.asp?award_recipient_id=261 We unfortunately couldnt find the help we needed either. This is a nasty, aggressive cancer. I have since found this site. We found it too late. But maybe, just maybe he can help. I am sorry about your mom. Maeburr Fri, 30 Jun 2006 00:00:00 GMT I am sorry there is another victim out there of this ilness. But she can beat it or at least live with it for as long as he can. I dont vknow how USA works with the Drs but any good stomach oncology specialist will be able to treat her correctly. At the moment the treatment is same as other gastric cancers. Othr things I do is keep clean organic diet as much as I can, although I now just follow what my body wants and feels is right. Also I try to follow my blood groop diet. It makes quite a bit of sense. I was very ill and now two months on, 3 moresessions of the new chemo and I am up again, been away on two hols already. I love travelling and never have given it up because of this. Ultimately my way of thinking is I have 50% chance to live or leave for the other side at any one time. Either way the decision has been made long before all of this happened. But when you think about it so does everyone else. Every day we all have 50/50, just dont think about it when things seem normal. Its hard at first to accept things and still feel normal, but it does come. Tell your mum to live her life as much as possibe the way she did before she knew about this. I know treatment prevents many things, but its not necessary to stop living, just slow it down. Mental strentgh is within but also its important to have support of friends and family around. You seem such a lovely son/daughter and thats already wonderfull for your mum. As far as books just look for any cancer surviving books and choose some. I have read many - some are good some are not. Francisco Contreras "The coming cancer cure" i liked a lot, it was the very first i read at the beginning and it lifted me immensely. Also many good Christian books can help depending on your mum's believs, but I found myself much closer to God since I have been ill and have felt his help many many times. All you need to do is learn more about it, ask for help and trully belief. Ask for each day alone and be gratefulc every day she awakes, because many would have not be awake that very same day. Hope she is strong, i am living with this for 18 months plus since diagnoses now and intend to carry on, I believe i will survive this and thats what your mum needs to do, its an ilness but does not need to control her, she can control it.. Other things I have found helpfull to cope with chemo - reflexology - really helps and relaxing/meditating CDs. God be with you and your mum. All the best and prayers your way. Tutsi Fri, 14 Jul 2006 00:00:00 GMT Tatiana, I wantedto aske you about your laparoscopy, how was it, did it give information about your stomach, please read my info, it is long, but may be you can help me with advice. I asked my surgeon for laparoscopy, but he said he can not justify this procedure. Thank you Ed Vtech Sat, 15 Jul 2006 00:00:00 GMT If you are worried instist on it. yes it gives complete information, also about what is going on around the stomach as well. You are put to sleep for a 30 mins, its quick and its totally fine. T Tutsi Sun, 16 Jul 2006 00:00:00 GMT I have heard it takes general anastesia to go thru this procedure. Please tell me how it was in your case, was it a decisive information, why laparoscopy, is it because everything else did not work, and only one way to see it is to look inside. Does everyone have to go thru this? Does Endoscopic Ultrasound show anything at all? CT scans, MRIs? Thank you Ed Vtech Sun, 16 Jul 2006 00:00:00 GMT Tatiana, I just came back home, so sad, disappointed. The doctor sent me to a physologist, who asked me questions if I lost interest to some things in life. Of course. So she put me on antidepressant, and gastroenterologist, who I saw after her, said the same things. I insisted on CT scan, and that was it. They said I am depressed, so Mayo CLinic sent me home. So much for a such a big name. I am in pain, I have nausea, It hurts me all the time.I do not know what to do next. I can not convince them that it is serios. But on the other hand I read all these messages, and see no hope once you diagnozed like this. So what is the point to go and humaliate yourself, beg for their attention. I wish I did not speak with that phycologist, but I thought they were there to help me. I do not know what to do next. Somebody, please, give me an advice. Ed Vtech Mon, 24 Jul 2006 00:00:00 GMT Dear Ed, I am sorry about what you are going through, but may be you really do not have this ilness, you mentioned you are eating well. That is the most important sign with this particular cancer. You will not be able to eat a full or even half portion of anything. Try and relax. You are reading our messages and you are panicking but we have been dignosed with this illness, we have been going through a variety of treatments and so on and so on. It seems to me you had all the possible test, and biopsies, and perhaps and praise the lord you dont have this or any other cancer. I think so many people have given you advice but ultimately we are patients and not Drs. It seems best to me at the moment to try and relax and do things you like doing and enjoy what you can. I pray for you that you clear. Lots of support through your difficult time. T Tutsi Thu, 10 Aug 2006 00:00:00 GMT Tatiana, I am the one that went to Mayo and was diagnosed with depression. I tried those pills, Cymbalta, and Pamelor, it helped for a while, but now it started again. I am making an appointment with Mayo again, and I am very scared, since I read all messages, and know if I have it, it is late, nothing will help. But, still have to go and ask if they can help me. I am eating normal portions, stopped Pamelor, and continue Cymbalta. Please tell me what should I ask them to look for, please help me with advice. Ed Vtech Wed, 01 Nov 2006 00:00:00 GMT Hi, I stumbled on to this msg board in my quest to find more information on LP. My partner was diagnosed with this cancer today. He had had an endless round of endoscopies, CT Scans, etc, which only showed a thickened stomach wall. An attempted laparoscopy was too risky as the doctors thought he had a lymphoma and were afraid his stomach would leak, and so the finally did a laparotomy 2 days ago. We got the biopsy results today. Just wanted to thank you Tutsi for all your posts on the board. It has comforted and encouraged me more than you could ever imagine. When my partner gets back from the hospital, I'll get him to read your posts too. If he recovers from his surgery well, we'll start chemo next week. The oncologist has recommended the ECF regimen. Oh and BTW, he's 32 this year. So I guess his age will work for him. We've set our mind to defeat this thing together. May God continue to walk with you every step of the way. Thanks again, Vivien Vvienl Thu, 23 Nov 2006 00:00:00 GMT Hi Vivien I have only just seen your message, sorry answering so late. But just wanted to ask how are you and your husband.  I hope he is still alive and fighting. I have had two very bad spells this year, the last one in hospital for 10 days all over the christmas period.  My new immunjology treatment did not work and now the cancer is in the bowel.  Back on strong chemo cocktail, hardly can walk the steps in my house, lost much weight, but still here, tomorrow will be 2 years since my diagnoses.  Two hard years, but two years of living.  Life is so precious, any extra is a bonus.  We are not in control of our time here, any given is a privilege, and I do believe we go to a better place one day.  I dont know how long I will have the strenght to fight.  Times have been so hard I think I am ready for a piecefull solution even if that means dying.  I just feel so sad for my family and what they are going through around me.  But still I dont have control over how long the battle will be and when is it going to end, just bravely get on with it.  This is my battle in life - cancer, we all have some battles to fight, and I am sure there are even toougher battles our there for many. You and your husband are so young, it seems so unfair, but bad things to happen to good people, to very good people, maybe there is a reason, the other place is much nicer perhaps, it is all a mystery, a journey, but it will have an end, somehow. God bless you and what ever you are going through, stay strong, stay loving and stay positive. All the bestT Tutsi Thu, 11 Jan 2007 00:00:00 GMT Dear Tutsi,My good friend and co-worker was just diagnosed with linitus plastica on friday.  He is a young, otherwise healthy mexican native that has been experiancing the weight loss, throwing up symptoms since July.  In August we finally talked him into going to the doctor (he hates doctors and hospitals) and after rounds and rounds of CT scans, endoscopies etc...they finally diagnosed him Friday.  We are sickened, to say the least, although his attitude is incredible.  Reading all your postings has been inspirational to me and I have passed them on to him and his girlfriend.  The lack of information that we are experiancing is disheartening and we could really use some information regarding expertise in this area of cancer where we live, which is Seattle, WA, or anywhere else in the U.S or British Colombia . When he was given the diagnosis he experianced some of the same things other people had experianced as far as not being given much hope.  This is awful...I just don't get that kind of negativity as far as helping an individual fight for their lives.  We're rallying around him and trying to help him with gathering as much information as we can find on the subject, so if anybody reads this and has information to share, please email me .   And Tutsis, god bless you and thank you so for sharing your story.  I don't know if you realize how very much it helps to read about treatments and survival stories.  I am sending you my prayers!! Debra 4moses Mon, 15 Jan 2007 00:00:00 GMT hi thank for your lovely message. Another victim it makes me so sad.. Well I am still here, very weak, very ill since christmass in and out of hospital, very thin, but my spirit is still strong. Waiting for a new revolutionary treatment that suppose to start in May in my hospital as a trial, its called T cell therapy and involves a lot of DNA coding, and scientific new methods, but I need to be strong enoughy to go on the trial, so I am trying, with Gods help I will make it as I believe that may be the future cure.  Just imagine if your friend finghts as long as me over two years, that treatment mights become available and successfull by then for all.  So dont loose hope till the end.  If the end comes I decided I willo faced it with dignity.  God Bless you all. T Tutsi Mon, 12 Feb 2007 00:00:00 GMT  On 2/12/2007 Tutsi wrote:hi thank for your lovely message. Another victim it makes me so sad.. Well I am still here, very weak, very ill since christmass in and out of hospital, very thin, but my spirit is still strong. Waiting for a new revolutionary treatment that suppose to start in May in my hospital as a trial, its called T cell therapy and involves a lot of DNA coding, and scientific new methods, but I need to be strong enoughy to go on the trial, so I am trying, with Gods help I will make it as I believe that may be the future cure.  Just imagine if your friend finghts as long as me over two years, that treatment mights become available and successfull by then for all.  So dont loose hope till the end.  If the end comes I decided I willo faced it with dignity.  God Bless you all. TOh Tutsi, so glad to know that you are still with us.  Your strength is an inspiring pillar for us all to reach for.  My friend started chemo last week.  He went to the Mayo clinic for a second opinion and they varified that he was in the IV stage. The cancer is not in any of his organs and his lymph nodes are also cancer free at this time which is amazing.  The hope is that the chemo will shrink the cancer We've a long haul ahead of us but knowing there are people like you out there also fighting and surviving provides hope when hope seems a distant relative.  The doctor spearheading his treatment is Dr. Linn who comes to Seattle from M.D. Anderson in Texas and he has been really positive about directing Moses to really look this devil in the eye and fight back as inner strength knows no bounds.  Dr Linn also mentioned the hope that new medications and treatments are being discovered every day. Godspeed to the researchers!!!  I want to thank you again for replying to this email.  It strengthens resolve in people to hear from a survivor.  Stay strong and I'm sending as much positive love and vibrations your way as is possible.  Debra 4moses Mon, 12 Feb 2007 00:00:00 GMT Debra,  I am very sorry to hear about your friend. I am suffering for more then two years, had tons of tests, went to many doctors, was in Mayo as well. Nothing to help me.Can you please tell me what location did you go to Mayo, MInnessotta, Arizona, or Florida, and who was the doctor.I would like to ask about the tests, what test showed the cancer? What tests were done at your hospital, and as well at Mayo.Please share with me.Thank you. Ed Vtech Sat, 17 Feb 2007 00:00:00 GMT hi ms t, i am new in this site, i am looking for a site that will explain more about LP, i come across this site, which in  a way inspire me on joining.  My mom was diagnosed w/ LP last January 2007, she went thru surgery Feb 14, sub total gastrectomy. Before the operation series of examination was done by CT scan, Upper GI series and endoscopy, that is when the doctor suggest operation first, after which chemo therapy will be needed. we just went to the doctor yesterday for the result of the histopath, the doc refer us to an oncologist which we will be visiting w/in the week, i happen to asked the doctor if he can give us at least the stage of the cancer, they said stage 3.  As of the moment mom is doing well, she is now eating, b4 our operation we were informed that a total gastrectomy will be performed, that we will be needing to put her to ICU after operation to make sure she's doing fine.  But w/ God's grace it was not a total gastrectomy, only 3/4 of the stomach was removed, we didn't put her to ICU, though the operation took her 8 hrs plus 2 hrs for recovery, she was able to manage 7 days only at the hosp instead of 12 days, many good signs were shown by mom.  My concern now is that how will she be able to cope up w/ Chemo.... would appreciate any insights and suggestions from you please...... Thank you. Daughter Phil Mon, 26 Feb 2007 00:00:00 GMT I have not been through stomach  removal myself as in the uk if the Lp is at 2 3 or 4 stage they do not reccomend this.  I have only had chemo for a very long time and so far I am not in remission but have kept on living for more than 2 years since diagnoses.  Not always well, not well at the moment.  I dont know how strong is your mum but chemo is not pleasant however she must think it is to keep her going.  New treatments come all the time and while we are staying alive the cure may just turn up.  She has to be positive. Many things will change she will not eat the same as before, she will probably loose weight, but it is about adjustment.  So keep her spirits up and if you believe in God pray for her . It really helps.  God bless you both. T Tutsi Thu, 01 Mar 2007 00:00:00 GMT Thank you very much for your reply..... so far mom has a very high positive attitude, currently she is undergoing a series of vitamins injection, doctor said its vitamin B..... Her chemo will start on March 16.   Honestly I am very afraid, I've been doing a lot of reading, some of the article I read are so depressing saying it will only be for 4 to 6 mos only.  But when I read your article and other's from this site, it gives me additional hope.  I am praying very hard to God, that if He will still lend her to us please help us do the right things for her, but if it is her time to go please do not let her experience so much pain.  Everytime I look at her I can see how determine she is to get well, that makes me thank GOD so much, I can feel HE is with us every step of the way. Thanks Daughter Phil Mon, 05 Mar 2007 00:00:00 GMT Hello Tutsi, I just wanted to tell you that I'm praying for you.  I have a close friend who was diagnosis with LP about 1 year ago.  I found you, by way of this web site while researching for treatments.  You've been an inspiration to me and I shared your earlier messages with him and his wife to give some hope where the doctors were not offering much of.  I pop in from time to time to check on your progress and your often in my thoughts.  I'm sorry to hear your having a set back at this time.  Your positive spirit shines though your posts.  You have been in my prayers often.He's been on chemo for the better part of the year with a few set backs in white count and now an adventure in pancreatitis. He's been on Doxirubicin, Cisplatin and continuous 5FU.  He's worked through most of it, taking a rare day off as needed.  He is truly an inspiration to the power of a positive spirit.  He has a lot to live for and he's doing his darndest to do so.I will continue to keep you in my prayers. Lifeevents Fri, 09 Mar 2007 00:00:00 GMT Good morning all,i have been reading your responses this morning and for the first time feel compelled to speak also.My father was recently diagnosed with LP and the butchers who feel they have the right to add the letters "Dr" in front of their names were very vague and dis-interested when t he first started going to them for his ailments.  Their notification to us of their finding was nothing short of atrocious, yet they got paid and their life goes on.  I'm sorry but I'm sure you can tell I'm very angry.  not angry at the fact that my father has this but angry at the fact that doctors are like this - with others also.  My father was recently diagnosed and we have modified his diet drastically to include only organic and to eliminate any acid in his body.All the victims of this nasty ailment who have spoken here have really touched me.  i feel like I've been given a hug by all of you - and you are the strong ones so from the depths of my soul, I really do thank you.I am in my mid 30's and feel like a 7 year old little girl seeing my father like this as he means the world to me.but there is one thing that I have come to realise through my own research of this terrible cancer.  There is a couple pieces of information which doctors do seem to know and do tell us.  i have also read two statements which are also key to survival which hit me between the eyes like being socked by a baseball bat.Cancer cannot live in an Alkaline bodyandCancer cannot live in an oxygentated environment.So whether my father decides to undertake chemo, radiation, pills or whatever treatment, reduction of his acidity and boosting his immune system to the max is the one thing that can ensure a good chance at fighting this and any other cancer.  the chemotherapy can only do so much but if your immune system is shot, how can you expect the chemo to do what it's supposed to do?Tutsi, you are a blessed soul.  My thoughts are with everyone who has a loved one, friend or even an aquaintance suffering from this or any kind of cancer as I wouldn't want this for any living creature.My nerves may be shot, I may be dancing one minute and in hysterical tears the next, but I'm also a very stubborn little squirt and will do everything and give everything I have to give this bug the biggest fight it's ever come across.If you want to take my dad, BRING IT ON! Maraki Sun, 11 Mar 2007 00:00:00 GMT  On 3/11/2007 Maraki wrote:Good morning all,i have been reading your responses this morning and for the first time feel compelled to speak also.My father was recently diagnosed with LP and the butchers who feel they have the right to add the letters "Dr" in front of their names were very vague and dis-interested when t he first started going to them for his ailments.  Their notification to us of their finding was nothing short of atrocious, yet they got paid and their life goes on.  I'm sorry but I'm sure you can tell I'm very angry.  not angry at the fact that my father has this but angry at the fact that doctors are like this - with others also.  My father was recently diagnosed and we have modified his diet drastically to include only organic and to eliminate any acid in his body.All the victims of this nasty ailment who have spoken here have really touched me.  i feel like I've been given a hug by all of you - and you are the strong ones so from the depths of my soul, I really do thank you.I am in my mid 30's and feel like a 7 year old little girl seeing my father like this as he means the world to me.Hi,I saw your post and felt compelled to reply.  I completely understand your feeling like a 7 year old.  I lost my father 11 years ago to prostate cancer (advanced at diagnosis, should have sued the "dr" but didn't want to rock the boat, age at dx. 52, remission for 4 years).  I felt exactly like that, like a little girl watching her big strong daddy fall apart and it scared me horribly.  It also made me stronger.  As I helped him with simple tasks in life, emotional support beyond what a daughter should provide for a father for any reason, and kept the family together and informed.  I, you see am a nurse.  I was a damn good ER nurse, but now I'm an even better oncology nurse.  My father taught me how to listen.  I learned my most important lesson from him in those years.  When someone says "you have cancer" you've now stepped into the "Twilight Zone" or "The Outer Limits" and your life is never the same.  You will never see life the same, see yourself the same, or feel a twinge the same.  My heart goes out to each survivor no matter what stage you are at.  Sometimes I feel I'm "cold" and have to be reminded of my dad.  I can't let each patient affect me like he did or I'd never get out of bed, but a good old jolt keeps me at my best. I can not praise family members enough who are the support, fighters on the side.  Be there for you dad.....sometimes the medical community is overwhelmed, your the eyes, ears, and heart that keeps us on our toes (as we should be).  I often wonder if my father would have just passed away without even being diagnoses because a swollen, and I mean 3 times it's size swollen, leg was not addressed medically but a recommendation of a "golf vacation" was suggested without a single test ordered.  I was my dad's champion (a bit to late though because he didn't want to burden any one) and demanded he go to the ER, for a non emergent issue, even though I knew it would be a long wait, upset my mother, and prevent that planned "golf vacation".  I've sence gladly produced the name of the "dr" who failed him at ever turn in my life.I guess I really didn't have a point here, but to say my thoughts are with you.And as always, Tutsi, your in my prayers. Lifeevents Thu, 29 Mar 2007 00:00:00 GMT  On 2/17/2007 Vtech wrote:Debra,  I am very sorry to hear about your friend. I am suffering for more then two years, had tons of tests, went to many doctors, was in Mayo as well. Nothing to help me.Can you please tell me what location did you go to Mayo, MInnessotta, Arizona, or Florida, and who was the doctor.I would like to ask about the tests, what test showed the cancer? What tests were done at your hospital, and as well at Mayo.Please share with me.Thank you. EdHello Ed,  So sorry it's taken me months to get back to you.  I've been working nonstop on a benefit for my friend to raise money for his cancer treatment etc.  Moses (my friend) went to the Mayo in Minnesota for his 2nd opinion and unfortunately diagnosis was confirmed as Stage IV linitus plastica.  You ask about how they finally found his cancer. After a wide range of tests: colonoscopy, endoscomy(sp?) cat scans, MRI...you name it, he had it twice.  Finally he went in for bloating and they extracted 2 liters of fluid from his stomach lining and upon investigation of this fluid his cancer was diagnosed. Aprx. 8 months later.   This was all at Group Health hopital in Seattle.  Fortunately for Moses, Seattle is home to Fred Hutchinson Cancer Research Center and The Cancer Care Alliance and it is here that he has started his Chemo under the watchful eye of Dr Linn who is an alum of MD Anderson and is thankfully well versed in treating this rare cancer.  Moses is living with cancer beautifully. He's still working doing landscaping  and eating as much as he can,trying to gain weight.   He's going through his 2nd more aggressive round of chemo and at this point and seems to be responding quite well.  We all have high hopes.Hope this info. finds you well.  Peace,  Debra  4moses Fri, 20 Apr 2007 00:00:00 GMT  On 3/1/2007 Tutsi wrote:I have not been through stomach  removal myself as in the uk if the Lp is at 2 3 or 4 stage they do not reccomend this.  I have only had chemo for a very long time and so far I am not in remission but have kept on living for more than 2 years since diagnoses.  Not always well, not well at the moment.  I dont know how strong is your mum but chemo is not pleasant however she must think it is to keep her going.  New treatments come all the time and while we are staying alive the cure may just turn up.  She has to be positive. Many things will change she will not eat the same as before, she will probably loose weight, but it is about adjustment.  So keep her spirits up and if you believe in God pray for her . It really helps.  God bless you both. TTutsi,  Debra here in Seattle.  Haven't seen any messages from you lately. Are you still there?  How are you doing.  My friend Moses is living with his cancer and fighting for dear life.  He's going through his 2nd round now and things are going rather well.  He goes in on the 14th of May for a battery of tests to determine how his cancer is responding to the treatment.  We have high hopes.  If you're strong enough let us know how you are doing.  Much love to you and remember how your fight has been an inspiration for those affected by this terrible disease.  Debra  4moses Fri, 20 Apr 2007 00:00:00 GMT hi my dad as just been diagnosed with linitus plastica after 9 months of every test avalible could you please tell me did it take as long for you to find out as it did for my dad. could also tell me if you where imformed if it was treatable as i dont really av much information on it. ps hope all is ok with you Ninja Mon, 23 Apr 2007 00:00:00 GMT Hi, I am very sorry to hear this news about your loved one.What kind of sympthoms did he have, and what kind of tests you had done?I have a stomach problem for more than two years, and still do not know what is going on with me. I am not loosing weight, I always have gastritis on endoscopies.  I went to Mayo Clinic number of times, and they diagnose me with depression, which is true, as a result of my ilness. I started to have pain under my left ribs, and there was a little bulging, and after a couple months I started to have the same pain on the right side, but no bulging. I tried some medicine, but nothing seems help for a long time. Doctors do not know what is happening to me, and I am very sad. I just did not read any sympthoms on this site, so i thought I will ask people directly.Thank you for answering.I hope you all get better. Vtech Tue, 15 May 2007 00:00:00 GMT  On 5/15/2007 Vtech wrote:Hi, I am very sorry to hear this news about your loved one.What kind of sympthoms did he have, and what kind of tests you had done?I have a stomach problem for more than two years, and still do not know what is going on with me. I am not loosing weight, I always have gastritis on endoscopies.  I went to Mayo Clinic number of times, and they diagnose me with depression, which is true, as a result of my ilness. I started to have pain under my left ribs, and there was a little bulging, and after a couple months I started to have the same pain on the right side, but no bulging. I tried some medicine, but nothing seems help for a long time. Doctors do not know what is happening to me, and I am very sad. I just did not read any sympthoms on this site, so i thought I will ask people directly.Thank you for answering.I hope you all get better.hyamy dad started off with pain in is stomach everytime he ate and the feeling of indegestion and heartburn he under went every test avalible even ct scans but nothing showed it up as time went by he lost loads of weight in total at moment 5 stone and still losing weight every day the only thing the doctors diagnosed him with at first was hitnus hernia because all the symtoms are the same as linitis plastica. he had a lapscopy done the other week to stage the cancer ie to find out how far it had progressed and unfortunatly it is in its final stages an d they have given him today anywhere between 2wks and 2mths left to live and there is nothing they can do him. aparently before is symtoms started he had already got it and wouldnt have known also before the symtoms started it was already to late to do anything for him has its such a fast growing cancer and it hides itself away hiden between the outer stomach and the layer of fat that protects the stomach and that is why its so hard to find we have even been told by the gp today that this breed of cancer is worst than lung cancer. i do hope you havent got linitis plastica or any other termenial iilness and that i hope it isnt serious but if you are unsure i beg you please go and have it checked out and if you aint happy with the answers you get then keep pushing dont give up because my dad only started with these problems 8 mths ago and as i say there aint any help for himgoodluck Ninja Tue, 15 May 2007 00:00:00 GMT Thank you so much for answering.I lost all hopes, since 2.5 years must be already late.  I live in pain, and went thru all possible tests. After reading all posts, I am thinking it could be my case. At Mayo Clinic I told the doctors, do you think it could be Plastica. They said, people die fast from it, you have it for long time, so do not worry.I do not know who to go to, who to see, it is like I hit the wall, and have to wait whatever happens.I thank you for your time, and wanted to ask if your dad had sympthoms like me. Thank you  Vtech Tue, 15 May 2007 00:00:00 GMT hi there. i have just read your message. we are in the uk too and my wife has Lp and is on her chemo, 2 months now. just wanted to see how you were doing and to give her some hope about her cancer and also if you have any advice for the tough chemo reigime. its so tiring for her.best wishes Mark and Michelle Markandmichelle Thu, 05 Jul 2007 00:00:00 GMT Hi everyone,Tutsi, just a quick line to see how you're doing. We haven't heard from you for awhile. Send us a msg if you can.Mark & Michelle, my partner (aged 32) was diagosed with LP about 8 months ago. He's been on ECF, had a full gastrectomy, and post surgery ECF. Not sure what protocol you guys are looking at. Tiredness is a common side-effect from chemo though. Can take up to over a year to regain your energy level. My partner had lots of green vege, we switched over completely to organic food, and he took Coenzym Q10 and that seemed to help with his energy levels, although he would often feel tired during the day, and would need to have little naps. The oncology nurses advised him to keep as active as he can (ie. try to do as much physical activity as he can) and just to have a nap when he feels tired. A good diet does make a big difference. He has avoided all sugary food and all bad junk-food.Hope this helps,Vivien Vvienl Thu, 12 Jul 2007 00:00:00 GMT Hi I would also like to thank everyone who has posted on this site, my mum aged 45 has just been diagnosed with LP and begins chemo tomorrow, because of this site we questioned why my mum had not been given Xeloda, and was following ECF treatment regime this was due to hospital policy but because we have questioned the doctor he said he could give Xeloda as part of the ECX treatment which means she no longer has to have a picc line and 24hr pump for which we are very grateful. We have also followed other advice including white tea and co enzyme Q10 if any one has any other advice/ support and hope it would be very welcome, thank you again.  nikki N1kk1w Thu, 23 Aug 2007 00:00:00 GMT  On 3/29/2005 Salty wrote:I was diagnosed with linitis plastica cancer last November. I have completed three rounds of chemo. I have been unable to have surgery due to the size of the cancer, the three rounds of chemo has shrunk the cancer slightly, but not enough to operate. My chemo doctor said the only thing left now is to give me a low dose of chemo and radiation, and I guess it is just to prolong my life. Does anyone know of something I can do different, or where I can go for a second opinion? Thanks. Hi, My mom was diagnosed with linitis plastica in Dec, she started getting sick in Oct, they took half her stomach out in Dec and put in a feeding tube, then they found the cancer when they sent that part of her stomach off for testing, they had done several biopsies in those few months, at least 60-70 and nothing showed up.  so we found a dr in Charlotte , NC  he is amazing, I wanted to take her to md anderson in Houston but her oncologist said this man was as good as they were so we went.  Where do you live?  People come from all over the world to see him, his nurse said people have went to md anderson and came back to him.  His name is Dr. David A. Iannitti in Charlotte, NC  He is with CMC. He really is amazing.  None of her drs had ever seen this cancer and we terrified but he knew exactly what to do.  He operated on her on Feb 12, he took her other half of stomach out, gallbladder and connected her escovegast to her intestine, took the feeding tube out and she could eat!She was in the hospital one week, and is about to start chem and radiation, he thought he got it all but the last report showed just a few cells around the ecopogaus but right now she is having a few problems, she is having some vomiting and says it feels like the food is getting stuck right around the center of the gut area, we hope to find out whats going on there in the next few days.  Email me and I will gladly give you more info if you want, god bless and keep you,I still believe in miracles and have just added you to my prayer list as I hope you will us.....love, Kat Kat777 Sat, 29 Mar 2008 00:00:00 GMT