Linitis Plastica

 

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.

 

T

Tutsi,  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

 

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

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.

 

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.

hya

my 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 him

goodluck

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

 

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

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

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

 

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