Information On Linitis Plastica

A year ago my husband was diagnosed with stomach cancer. He underwent a total gastrectomy when it was discovered he had the rarer form of stomach cancer known as linitis plastica. Despite hopes that this had been caught in it's early stages, it was not. They were unable to get a clear margin when removing the stomach and some cancer cells were left. He underwent a gruelling 18 week course of chemotherapy (MXC)in the hope that this would kill off the remaining cancer cells, unfortunately it seems that the chemo has not worked and we have now been told that the walls of his bladder and abdomen are showing signs of thickening, indicating that the cancer is now attacking these organs. Does anyone have experience of secondary linitis plastica once it attacks further organs, there seems to be so little written about this cancer once the stomach has been removed. It seems that even the doctors don't actually know what the next stage will be, we just seem to live from one hospital appointment to the next on a roller coaster of good followed by bad news.
PS: We have just been told that the cancer is now very active, this is confirmed by the large abdominal swelling caused by fluid build up. Another round of chemo is now his next stage of treatment, although we have been told that this will not cure the cancer. Is there anyone who can give us advise on what happens next........

Hi Eileen, i am 61 yr old male with linitis plastica, diagnosed may '05, could not have surgery since it had spread to bottom of esophagus and some nodes. took 6 rounds (6months) chemo-cisplatin, epirubison and 5fu, finished those dec '05. am now having abdom pain, CT, MRI and barium swallow can't find anything going on, but i feel like it has come back.....i know what you mean about the roller coaster, and just going from one appointment to another. I see surgeon tomorrow, hopefully he will do a laproscopic look see and find out what is going on. I have found clinical trial of new drug called Lapatinib which I will take once we find something they can "measure". Unfortunately there is not a lot of information out there, I wish I could be of more help. Best wishs to you and your hubby, I will pray for you, Les

Les, can you please tell me your symptoms, or how did they diagnose you. I have this problem for 1.5 years, and feel it is getting worse.
I just had some tests at Mayo Clinic, and came back home from Rochester, MN. They said I have depression, but I do not think so. I heard it many times, and went to Mayo with hopes to get help, but it is the same thing. It hurts a lot, but they do endoscopy, take biopsyes, do CT enterography, and send me home with antidepressants. Pleas tell me what shold I do?
Thank you
Ed

Hi Ed, I will try to answer your questions. Les had a couple of episodes of vomiting and severe stomach pain and was diagnosed and treated for H. Pylori a few months prior to his diagnosis of stomach cancer.He was eventually referred to a gastroenterologist who did an endoscopy and found a tumor at the base of his esophagus. He was referred to Barnes in St. Louis for surgery. They found his entire stomach to be cancerous and was unable to do the surgery. His only option was chemo. which appeared to be successful for several months. He was hoping to start a clinical trial of Lapatinib but his kidney function was too poor. He passed away June 21st. I don't tell you this to depress you in any way. Les had a wonderful attitude and we believe every day he lived was a wonderful gift from God. We were married for 41 years. Les had a courageous spirit and was determined just like to you to do every thing possible.

Thank you Mrs.
I do not know what to say, but I thank you for you courage in answering my question eventhough you did not have to. It is hard time for you. Please find comfort that God is in charge here.
I asked my surgeon to do laparoscopy, but he said it can not be justified. So I went to Mayo, where I was very hurt and disappointed. I thought thay help people, but now it looks like thry only take cases they are interested in.
Well, here I am, with pain, praying and crying, have 2 children and 3rd is coming in 3 weeks.
This is why I wrote to your husband, hoping he would share what to pay attention to, and how to find it, or exclude.
Dear Mrs, thank you for being so kind and responding.
May God bless you, your family until you all meet again, in a place with no tears, and no pain.

Ed