Linitis Plastica

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!

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

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

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.
.

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

Do you know if Linitis Plastica is hereditary?

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

There is more information regarding linitis plastica at the following link: http://www.cancercompass.com/message-board/message/all,3135, " target="_blank" rel="nofollow">http://www.cancercompass.com/message-board/message/all,3135, ">http://www.cancercompass.com/message-board/message/all,3135, " target="_blank" rel="nofollow">http://www.cancercompass.com/message-board/message/all,3135,

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

http://www.msfhr.org/sub-funding-recipients-profile.asp?awar

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.