Linitus Plastica Foundation?

Hello,

My name is Francesca, this afternoon my young uncle passed away from Linitus Plastica. I want to know if there are any specific cancer research facilities or foundations for Linitus Plastica? Our relatives and friends would like to make donations instead of flowers.

Thank you for your time and effort.

Dear Francessa, So sorry to hear that your young uncle passed away with the above cancer, we as a family have just been told that my 92year old nan has this particular cancer, as we know nothing about this, if you are brave enough could you tell me some of the symptoms of this cancer, plus we have heard that it is herridity is this correct??.. thanking you anyone for you time to respond with any information about linitus plastica cancer... many thanks.. Michelle

My 65 year old brother was just diagnosed with linitis plastica. His oncologist says he has had it for about a year. We are being given very little encouragment but his MD Anderson oncologist is working hard to treat his cancer. He had dental work done and immediately broke out in blisters around and in his mouth. He then developed diarrea that could not be controlled with over the counter medications. He went to his internist where he got a prescription that controlled the diarrea but then began vomiting his meals. He continued under the care of an internist until he finally referred my brother to a gastroenterology group. He was under the care of both groups of doctors for probably 6-8 months or longer with no diagnosis. He was sent for a barium swallow and vomited the barium. The technician called his doctor and insisted on hospitalization. He was in the hospital for about 10 days where his entire digestive track was scoped and CT scans and x-rays were done with no diagnosis. I insisted that slides from his biopsies be sent to Mayo Clinic. His GI doctor pushed back (really balked) but did send some to Mayo. The original diagnosis was peritoneal carconomatosis. We got him to MD Anderson where a more finite diagnosis of Linitis Plastica was made. If you have any experience with this disease please let me know the treatment. I understand that the Japanese have made great strides with stomach cancer and I hope with our specific stomach cancer (Linitis Plastica). Please respond ASAP. You can call me at --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thank you and God bless you.

Hi, my name is Les, I was diagnosed with linitis plactica in May 05. Was attempting to have surgery, when they opened me up they found the "leather bottle" of a stomach, put in a feeding tube, sewed me up and basically sent me home to die. Since then I've had six rounds of chemo consisting of epirubison, cisplatin and 5fu. Completed those rounds in early Dec.05. Just had my latest PET/CT scans, they find NOTHING going on, praise the Lord! Soon after I began chemo I could again eat. The cancer had spread to bottom of esophagus and was causing swallowing pain. Today I feel almost as good as ever. I have burning feet is the main side effect of the chemo. I am now pushing my oncologist to give me what is called "targeted" chemo drugs which just go after cancer cells and not everything else which the earlier mentioned drugs do, so there should be fewer side effects. Do NOT give up! I've also had many, many prayers sent up for me which have boosted my spirit the entire time. If this stuff can be survived, I am going to do it!! Best wishs, Les

Les, Thank you so very much for your response. My family and I need to stay in communication with you. Many people are praying for my brother as well. My brother is on Cisplatin 67 mg, Mannitol 25/FTV2 100 mg, and Camptosar 95 mg. After two weeks and three days he began to be able to get food down. Not enough, but some is encouraging. We know the chemo is working to some extend. We are so hopeful that at the end of this treatment (in about 5 weeks) when he is reevaluated that the esophogus will be much improved. Our hope is that surgeons will be able to remove the cancerous stomach and part of the esophogus and connect the remaining esophogus with the upper intestines.
Good luck to you! It sounds like you are on the right track! Please stay in touch! Hopefully, both of you will beat this cancer!
Thanks for your very encouraging response!
Brenda

Brenda, good to hear from you. I would give you my e-mail address but I think the person over-seeing this message board will probably delete it, will try anyway, it's --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Anyway, when I tried to have the operation you mention, they just sewed me back up because my ENTIRE stomach was like leather, nothing left! However, I got rid of the feeding tube in a few weeks, now eating and pooping normally. Don't know how my stomach can still be working but it is. Since I've completed my six rounds of chemo, each three weeks long with a week off before starting the next one, I'm now looking at what to do next. Am considering a drug called lapatinib. I think you need to do all the reaearch you can and push your oncologist to the limit. Continue with the prayers and hopefully your brother has a "beat cancer, can do" attitude as I believe this helps a bunch. God can do anything, nothing is impossible. Bottom line I believe I will live as long as He has a purpose for me here. I am 61, have two grown children who live away, and a dear, dear wife. God bless you and yours, Les

I got it Les! Thank you. Are you gaining weight and strength? My brother is as thin as a rail and weak but his oncologists don't want to have the J-tube inserted or the feeding stint. They told us last treatment (1/2 way through) that he is right on target but it's hard for us to see it because of the throwing up and weakness not to mention his extreme weight loss. Thanks for the response.
Brenda

Hi Les,
I am not as fortunate as you. My wife was diagnosed as advance linitis plastica end Dec 2005. The doctors said that they cannot do anything. She passed away on Feb 16, 2006. You were diagnosed on May 05. When did you have the surgery? Did they know about your leather stomach before or after the surgery? I am very glad that your are alive and well. Les, your reply will mean the world to me,
Sincerely, ThomasTan1953

So sorry to hear of your loss, God bless you.
I could not have surgery, they attempted it but quit after they opened me up and found the linitis plastica, did not know it was there until then. Chemo is the only thing they can do for me, so far we've had good results. Les

Hi Les, Life is so precious. I am so glad that you have done so well. The doctors said they cannot do anything for my wife when they found out she had linitis plastica. They could see the "leather" lining the stomach using the scope. As they also found a tumor at the esophagus leading to the stomach and another just after the stomach, they inserted a stent at each end to prevent both these tubes from closing when they do the chemo. It was unfortunate that her vomiting increased after putting the stents. She did not make it to any chemo session.

Nothing I can do will bring my wife back. However, I hope to be able to benefit future linitis plastica sufferers through the experiences I went through as well as shared experiences form other sufferers like you. It will be great that I am able to tell the doctors your situation. I am sure they will like to keep in touch with your doctors and learn from them so they can help surviving linitis plastica sufferers. It will be great if you or anyone can let me have the contacts at the hospital where you are getting your treatment.

I am in Malaysia and it is now my prayer time. I pray the very best for you.

Sincerely

ThomasTan 1953