Linitis Plastica

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 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

Could you tell me the name and contact information of the Doctor in Japan to which you refer.

Thank you

Gerry

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,

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

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

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.

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

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.

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.