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linitis plastica

julia lynn
Posts: 3
Joined: Aug 2008

I have avery close friend who has recently been diagnosed with linitis plastica. It is inoperable and stage four. He is very ill and only 36 years old. The cancer has spred through his abdomen wall and appears to be spreading through his body. He is waiting to start chemo once he heals from an operation during which they had hoped to remove his stomach but were unable to do so. His prognosis is bleak and I was just wondering if anyone out there has ever beat such a poor outlook. He is looking at a few months of life if he's lucky. There sre no words for the sadness this his causing his young family and his many friends. Please help us.

mzvonda
Posts: 5
Joined: Jun 2014

Are you still out there?  My husband was just diagnosed today.  His gi dr said the survival rate is less than 5%.  I don't believe him.  I need to find more information.  Please help me.  Tell me what I can do to help my husband.  We have no insurance.  We haven't even been married 2 years yet.  Please give me some direction.

Please.

Vonda

 

marinagorevski
Posts: 4
Joined: Jun 2017

hello survivor2009,

will you please talk to me so you can share more info on this disease with me? please feel free to text me: my cell phone is 585 200 0832

thank you

marina 

 

Talkdoc2000
Posts: 1
Joined: Oct 2015

I realize that I am responding a post that is old but the description your provided sounds exactly like what my wife is going though.  I am a very practical person and simply trying to get more information on the progression and timeline of the disease.  My wife was the epitomy of health one day and the next day looked like she was 9 months pregnant.  It began in March and now we are in October after a two week stay at MD Anderson.  No really sure what they can do for her but was curious about the progression of the disease and wanted to know if you could share with me some more ifnormation about the course of the disease.

 

Thank You

Talkdoc

 

Talkdoc2000@gmail.com

HSimpkins
Posts: 3
Joined: Sep 2009

This particular type of Stomach Cancer IS hereditary. I lost my mom to it Dec 26 2008. Before she passed I did a lot of research on it because almost everyone on my mom's side has had cancer. I went to a genetics counselor at Kaiser and they did a family tree for me. They came to the conclusion that my mother would need to be tested to see if she had that particular gene. "CDH1" The problem is your family member has passed, then they cant be tested. I was fortunate enough to push my mother's dr to test her, even though it was a pain. My mom health insurance was different "Health Net" and they are not quite as easy to have other test's run. They would have to mail her blood test's to "The City of Hope" to run for the gene. Luckily, my mom did not have the gene and my daughter and I can rest assured that we dont either. I think it should be standard to test ALL cancer patients gene's in order to do research. We got to do this while they are still alive! I know it's hard enough to go through the battle with you loved one. It's an awful disease, but we have to keep our head in the game. So others will not have to go through this again.

joey37
Posts: 1
Joined: Oct 2009

i am in stage 4 of linitis plastica and have less than 4 mts to live drs.say. no treatment recommended. how did your father die in the end. Just sorta wanted to know what to expect. they said I would probably die of phneumonia.

vijendrasnv
Posts: 15
Joined: Oct 2009

Hi,
It’s really wonderful to hear someone with so much optimism. I loved your positive attitude. But I'm wondering how you stayed active during treatments. This disease is so horrible.
Everything I've found (which is so little) on this cancer maintains a very low prognosis. I can't believe how rare this is and how little information is out there.
Thanks.

sarahvhobbs
Posts: 2
Joined: Jan 2010

I feel bad being honest about my experience with linitis plastica when my father died of it eight years ago but the NOT knowing made things much worse on my dad, my sister and me. One thing that is different is that my dad also had an esophageal tumor at the base of the esophagus going into the stomach which added complications I'm sure.

Here is how it happened with him:

It was seven weeks from diagnosis until he died.

He did get pneumonia while in the hospital about a week and a half before he died. They were able to get rid of the pneumonia.

He eventually could not keep any food or drink down towards the end.

We were put in touch with hospice and they were a godsend. They took care of our dad. They took care of us. And they answered any and all of our questions that they could.

Ask/demand as many answers from your doctors as you can. It is your right to know and their obligation to inform.

You're in my prayers.

Sarah

heartgoesouttoall
Posts: 1
Joined: Jan 2010

HI first i want to say that I'm ever sorry to heard about your cancer. My mother in law has passed away on may22 2009. The cancer is very rare and fast spreading. Some can get treatment and work. But in other cases like my mother in law your body will rejected it. As the whole thing happen with her hospice was with us. They say that a big percent of dying is on you. If you have 100 percent will to fight though all the things that gets thrown at you then u have a chance to live. Keep your head up and and live in every second. If i can help you with anything please just let me know. Eshawnaheaney@yahoo.com GOd bless you!

kenandkat
Posts: 3
Joined: Jan 2010

My 55y old husband was DX in Oct 09 and shortly after DX made by CT abd and chest had the development of DIC occur. AT dx his cea was 667 AND cA 19-9 133,000.(Two months prior, he had a EGD and colon done. Also, an esphogram and ENT scope done also. All negative......) We were told to get affairs in order that prognosis was poor. Well going on his 8th chemo tx....we do every 3 weeks Taxotere and 5fu. CEA is 1.4 and ca 19-9 2100. He still works FT and weight is 190. He has the most outstanding outlook and work ethics!!!! He views each day as a blessing!!! By the way, he is a physician. Interested in other lab values at DX to compare.

sarahvhobbs
Posts: 2
Joined: Jan 2010

I can only tell my story with my dad and I'm afraid it isn't a good prognosis. You need to ask and/or demand answers from his doctor. This type of cancer isn't very common and, I think, therefore that some doctors are not well versed in this type or perhaps, in my dad's case, don't want to deliver bleak news. My dad was older than your friend (73), but my dad, my sister and I did not get answers about our dad's prognosis until we enlisted hospice. I'm sorry to say this but it was two weeks after that that he died.

mzvonda
Posts: 5
Joined: Jun 2014

Cancertutor.com  lots of good information.  I just wish we had found it sooner.  this type of cancer sucks.  My husband was found with stage 4 and he survived over a year.  It sucks.  I'm not lying.  Get a good advocate who can help him.  Someone who is familiar with cancer and can help him along his journey.  He is going to need the help because there is so much information out there and he will be to sick to keep up with it. 

red_ridder
Posts: 1
Joined: Mar 2016

My wife was diagnosed with Linitis Plastica and chemo was started about 2 weeks ago, trying to offer her whats best, in the same time I am trying to understand if anybody tried alternative treatment and if they survived this kind of cancer.

I really believe that god, with the help of chemo plus some kind of alternative treatment can cure this.

Any thoughts are welcome.

cvertich
Posts: 3
Joined: Dec 2017

I am a 49 year old male who has taken good care of my body and taken no medicine. What a surprise that in April 2017 I was diagnosed with Linitis Plastica. As you have already seen through your research, this is a grim diagnosis. My wife and I were terrified because all of the research and most postings indicated that there was only a small chance of survival. Though that may be true, it looks like I may have beaten the odds. Diagnosis was stage 2 with no spread outside the stomach and esophagus.

There is no doubt in my mind, that your medical team will greatly determine your chance of survival. Upon diagnosis, I immediately flew to Houston to meet with the doctors at MD Anderson. My wife and I then got multiple opinions from doctors, including the head of oncology in Taiwan where stomach cancer is much more common than here. Every doctor confirmed that the treatment recommended was correct so we went forward.

Treatment started with five rounds of a chemo regimen called T-Fox every other week. Next was five weeks of radiation. Finally, a total gastrectomy. When my stomach was removed, the cancer was 99% dead with no spread. The chemo and radiation did their job. Though I didn't like the idea, the surgeon was clear that total gastrectomy with a cancer this aggressive was the only appropriate surgery. All of the other doctors agreed.

Surgery was on October 3rd. Life is finally returning to normal after the surgery. The bad news is that the recovery has been much harder than I had thought. The good news is that it does get better and life is returning to normal.

Good luck to you.

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