linitis plastica

Elan16 said:

Linitis Plastica
Hi there,

I am Elan from Malaysia.... my best friend was diagnosed with G Ca Stage iv.. in detail read linitis plastica. It was discovered from fibroid removal in womb... cancerous cell in fibroid made her losing her womb and ovaries. It took a while to discover the origin or finding the primary source while stomach cancer stage 4 was determined. After few 2nd opinions, finally it was discovered that the cell started from stomach outer wall or lining. Now she is going through xeloda chemo treatment. Fututre looks so bleak. I give no hope but asking if you have found better solution so that we can share and help people who we love. Thanks.

Elan16 said:

Linitis Plastica
Hi there,

I am Elan from Malaysia.... my best friend was diagnosed with G Ca Stage iv.. in detail read linitis plastica. It was discovered from fibroid removal in womb... cancerous cell in fibroid made her losing her womb and ovaries. It took a while to discover the origin or finding the primary source while stomach cancer stage 4 was determined. After few 2nd opinions, finally it was discovered that the cell started from stomach outer wall or lining. Now she is going through xeloda chemo treatment. Fututre looks so bleak. I give no hope but asking if you have found better solution so that we can share and help people who we love. Thanks.

Bill R said:

Information Sharing
Hi JuliaLynn -
I am 53 and was diagnosed with Linitis Plastica just this week.
They are testing fluid build up in my chest cavity to see if it carries any cancer cells. They will also do a P.E.T. Test next week to see if it has spread. If both tests come back negative (we are praying) they will operate to take out the bad portion of my stomach.

If anyone has any information on this disease or can recommend a good doctor in California( we live in Huntington Beach), please let us know.

We will share as we gather information too.

Bill R

Dear Bill R

Wanted to check in with you.  If you are still looking for oncologist, I suggest UCLA or City of Hope.  My husband was diagnosed with LP June 2011.  He was to have a total gastrectomy, but during surgery it was found cancer had spread.

That was October 2011 and he is doing pretty well.  Yes, he is not his old self, tired, chemo brain, but....he is beating all the odds.  He attributes his success to walking

each day, getting lots of rest and love and support from family and friends.  We have been told by oncologist that he must be on chemo the rest of his life.  After 1-1/2 years

on chemo, I can see it is taking a toll on his digestive systems.  Diarrhea, constipation and not eating right to name a few.  He has not had chemo for about 8 weeks because of low

blood counts (WBC and Platelet mainly).  His diarrhea persists and I am worried.  Anyone have any comments on extreme diarrhea.  Meds do not seem to help.  Doctors will never

give a prognosis.  Doctors realy just don't really know with Linitis Plastica, recovery and survival are all across the board.  

Any stories on long term chemo with LP? Quality of life? I would love hear comments.  More awareness on LP needs to come forward.  Please connect

Bill R said:

Information Sharing
Hello Alexandra1126 -

I just read your post from May 8, 2012.

I was diagnosed with this disease this week, Nov 15, 2012.

I would love to share information, remedies, treatments, etc.

I had fluid removed fom my abdominal cavity today - it will be tested for traces of cancer cells. We are praying this comes back negative. Next week I take at PET Scan to see if it has spread. Praying for negative results. If both are negative, we operate to remove bad portion of stomach.

I hope you are doing well.

God Bless You.

(You can also email me at breagan19@gmail.com.)

Dear Bill,

I just read your post from Nov, 2012.

Hope that you have stated your treatment and that you are dong well.

My mother was diagnosed with this type of cancer in Aug 2012 - I have described her initial diagnosis and that she was prescribed chemo in my post "Surgery after Chemo". Her cancer was advanced but she showed great improvement after 3 courses of chemo (taxotere, 5Fu, Cisplatine). We started chemo in Sept 2012 and on the control scan in Dec 2012 we were told that 90% of the cacer has gone - only a tiny residual left in the stomach. We are now in the process of doing another 3 courses and hope that she will achieve a full remission.

Another thing to mention - she too had ascites but it vanished after the first chemo infusion. In our case no fluid was taken to  test for cancer cell.

My mum is 68 years old and although her chemo regimen is tough, she is coping well - she has about 3 difficult days after each infusion but during the rest of the time she is well - has good appetite, manages light house tasks and weather permitting goes out for walks.

This is our experience. Please keep your spirit up and best wishes,

Tonia11 said:

They determined by a CT scan. We were never directly told what stage just that it was advanced. I don't think they'll even consider surgery until after radiation and at least one round of chemo. My husband doesn't have the linitis plastica "variety" though. Just adneocarcinoma (sp?) of the stomach. At dx the tumor measured about 6cm with lymph node involvement but with no spread to other organs.

About 6 months ago I lost my uncle to colon cancer. He was diagnosed four months before the disease took his life. As a family we are trying to help save the lives of others. We need 100,000 people to sign this petition for our voices to be heard. There are about 102,480 new cases in 2013 that can result in as many as 50,830 deaths. One in twenty people are at risk for developing colon cancer because we are not educated on this issue. Incidence rates in adults younger than 50 have increased over the years resulting in a number of people losing their lives so young. PLEASE FORWARD THIS TO EVERYONE YOU KNOW !

Petition Link wh.gov/wtuJ

Early screening can save a life.

Thank you for your time and support,

JDrayton said:

I was diagnosed in May 2008
At the time of my diagnosis I was 60 years old. I was told I had stage 4 and my chance of survival was zero, there were no treatments and I would die (this was told to me by a professional oncologist OVER THE PHONE!). I took control of my situation, went to Georgetown University Hospital in Washington DC and was seen by an outstanding oncologist. He told me without treatment I had months to live, however with treatment they would hope to prolong that into years. He referred me to MUSC in Charleston, South Carolina to be closer to home. Another terrific doc! I was set up for "Nectar of Life" (as I call chemo) and had my first treatment in June, 2008. I live on Hilton Head Island, and discovered we have an oncologist right here that could administer my "Nectar". During my treatments I have stayed very active - still working, enjoying friends and family and some traveling (limited only by my treatment schedule). I walk and/or ride my bike up to 4 hours every morning prior to going to work. I changed my vocabulary - I don't have "bad days", I have "less than 100% days". At the onset of this journey, I read Bernie Seigels book and followed the positive thinking approach to my diagnosis. Prayers from all around the globe have been abundent. In September, after 4 treatments, a CT scan indicated a "drastic" reduction in the mass, which was followed by a PET scan which did not show any cancer. I took two more treatments as a precaution and another PET scan - once again clean. I stopped "Nectar" after a total of 6 treatments. I had a wonderful holiday season, and last week went in for my 3 month check-up. I was surprised that the mass had grown some, and I'm scheduled to begin "Nectar" again next week. I've been very fortunate that I have found God and I have come to enjoy the beauty of all miricles around me. I have seen "spirits" and they don't frighten me, I've seen and experienced amazing things - I've opened my eyes and ears to all things. I've stayed positive (don't get me wrong, there have been crying times!) and know it's much easier to give up than to fight - by fight I will! Some of my tricks include deep breathing - "In with health and peace"...."out with desease and pain" - over and over. As I go to sleep at night I instruct my body to heal itself. I also don't miss a chance to have someone pray for me or with me. I see myself as a survivor and have it written all over. I "visualize" situations - such as my 61st birthday - which I DID celebrated in September. I know statistically it won't be easy.... and I'll never be cured. However, I keep reminding myself that years ago at least 95% of women diagnosed with breast cancer did not survive - that's not the case any more. The drugs we are taking today were probably not available 4 years ago. Medicine is moving fast - will it help us .... they probably already have! My advice - do not be afraid - everyone has a terminal illness, it's called "Life", so that out of the way, focus on what you have, push youself when you don't want to, stay positive and talk to God - often... he listens.
God Bless you and all of us and our families and friends as we take our journey .....

My name is Vonda.  My husband was just diagnosised with linitis plastica and the gi dr gave him a 5% change of recovery.  Please give me more information if you can.  We are so screwed because we have no insurance.  It's a long story.  I can't hardly find anything on the internet because it is so rare.  Anything you can tell me will help.  I am just trying to give my husband further info so he won't be so discouraged.

Thank you,

Vonda

mspegbow86 said:

information sharing

Dear Bill R

 

Wanted to check in with you.  If you are still looking for oncologist, I suggest UCLA or City of Hope.  My husband was diagnosed with LP June 2011.  He was to have a total gastrectomy, but during surgery it was found cancer had spread.

That was October 2011 and he is doing pretty well.  Yes, he is not his old self, tired, chemo brain, but....he is beating all the odds.  He attributes his success to walking

each day, getting lots of rest and love and support from family and friends.  We have been told by oncologist that he must be on chemo the rest of his life.  After 1-1/2 years

on chemo, I can see it is taking a toll on his digestive systems.  Diarrhea, constipation and not eating right to name a few.  He has not had chemo for about 8 weeks because of low

blood counts (WBC and Platelet mainly).  His diarrhea persists and I am worried.  Anyone have any comments on extreme diarrhea.  Meds do not seem to help.  Doctors will never

give a prognosis.  Doctors realy just don't really know with Linitis Plastica, recovery and survival are all across the board.  

 

Any stories on long term chemo with LP? Quality of life? I would love hear comments.  More awareness on LP needs to come forward.  Please connect

 

 

 

 

 

 

I realized I gave you no way to contact me.  mzavsfan@hotmail.com  303-868-9132    sorry about that.  I look forward to hearing from you.  I hope you are well.

Vonda

glocat63 said:

Linitis Plastica Hereditary?
Hey, My husband, age 50 diagnosed at end of April 2009 with a cancer, not linitis plastica until May 17, 2009 after an exploratory surgery...after having several tests, scans and blood work. They could not figure out what was wrong with him but concerned it was cancer or liver disease. His symptoms started with stomach problem, loose stool, urge to go, and acid reflux. He went to the Doctor in mid January 2009 and a colonoscopy was scheduled for February 2009. The results were negative for cancer but he was diagnosed with diverticulitis. At this time severe ascites started, fluid in stomach area....looked like he was pregnant. He had severe discomfort and hospitalized in February for 5 days. The doctors all thought it was a liver disease but all tests, scans, and numerous consults were benign. Brian wanted to do tests out patient. He had eight liters drawn out of abdomen, felt better. He had almost weekly draws of fluid from his stomach of 6 to 8 liters of fluid. We proceeded with outpatient testing with no results through April 1, 2009 when Brian started vomiting bile. Severe weight loss continued as he had lost 70 lbs from December 2009. His sodium dropped to a very low level and he was placed in ICU he could have died at this point. He stayed in Hospital until Easter weekend, returned home for one week and rehospitalized to find diagnosis. He could not eat or drink...vomiting bile and continued loose stools. They did start TPN, feeding through vein and his vitals and blood work improved. When diagnosis found, he returned to hospital closer to home where surgery was performed and the linitis plastica discovered.

I had never heard of linitis plastica. The exploratory surgery done in May indicated the cancer of unknown origin....The Oncologist refers to it as gastric cancer, a hardened stomach...the cancer is in the lining of his stomach. There are notable lumps in his stomach and upper chest....these are lumps from his cancer in the GI tract. They were not visable on scans, but doctors would alway come in and push on them....His cancer is inoperable. He is very thin and weak. He started the Magic ECF and had no results. Apparently this Magic treatment works on 80% of people with this type of cancer, but not Brian. He was started on FAM and this chemo has stopped the growth and he has his second round 2 days ago. He hopes to return home later this weak with continued TPN and Fluids. He was throwing up almost 20 to 30 times a day! Now just once a day and starting to eat a little each day.

Now in Brian's family, two Aunts had died of breast cancer years ago. When I was searching the internet today I found an article regarding HER2 and using herceptin for linitis plastica. I am going to bring to the oncologist attention tomorrow. He as already told me point blank. Brian is dying, and that I am in grief and need to ask these questions...so I will...with great Hope Brian can retain some quality of life....I will also ask for others and for family members. Perhaps for doctors, if they review history, and see all the cancer in family and patient presents with all Brian symptoms...they could catch sooner.

"HDGC is inherited in an autosomal dominant pattern, therefore several generations of relatives with stomach or lobular breast cancer are often seen clustering on one side of the family. Gastric cancers that occur in this syndrome are of the “diffuse” type (as opposed to “intestinal”) and often have “signet ring” cells through the stomach wall causing thickening (“linitis plastica”) without forming a discrete mass."

Well, there it is....I have been searching for the above today. The oncologist said there is no known cause for this type of cancer 2 months ago. When I searched the internet other days I could only find causes such as foods, enviroment etc.....and did not come up with this page. In June 2009 the Study was done on Herceptin and Stomach Cancer which let me to the above on hereditary. Herceptin is used for Breast Cancer. If Brian could be tested or if he has been tested for HER2 maybe this will help him....or others reading this site....Well, If anyone has ideas PLEASE SHARE!! Seems that LINITIS PLASTICA not so rare with all I am seeing...I think if there were only a few cases a year, that would be rare...well, it is not so rare to me anymore...

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

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.

JDrayton said:

I was diagnosed in May 2008
At the time of my diagnosis I was 60 years old. I was told I had stage 4 and my chance of survival was zero, there were no treatments and I would die (this was told to me by a professional oncologist OVER THE PHONE!). I took control of my situation, went to Georgetown University Hospital in Washington DC and was seen by an outstanding oncologist. He told me without treatment I had months to live, however with treatment they would hope to prolong that into years. He referred me to MUSC in Charleston, South Carolina to be closer to home. Another terrific doc! I was set up for "Nectar of Life" (as I call chemo) and had my first treatment in June, 2008. I live on Hilton Head Island, and discovered we have an oncologist right here that could administer my "Nectar". During my treatments I have stayed very active - still working, enjoying friends and family and some traveling (limited only by my treatment schedule). I walk and/or ride my bike up to 4 hours every morning prior to going to work. I changed my vocabulary - I don't have "bad days", I have "less than 100% days". At the onset of this journey, I read Bernie Seigels book and followed the positive thinking approach to my diagnosis. Prayers from all around the globe have been abundent. In September, after 4 treatments, a CT scan indicated a "drastic" reduction in the mass, which was followed by a PET scan which did not show any cancer. I took two more treatments as a precaution and another PET scan - once again clean. I stopped "Nectar" after a total of 6 treatments. I had a wonderful holiday season, and last week went in for my 3 month check-up. I was surprised that the mass had grown some, and I'm scheduled to begin "Nectar" again next week. I've been very fortunate that I have found God and I have come to enjoy the beauty of all miricles around me. I have seen "spirits" and they don't frighten me, I've seen and experienced amazing things - I've opened my eyes and ears to all things. I've stayed positive (don't get me wrong, there have been crying times!) and know it's much easier to give up than to fight - by fight I will! Some of my tricks include deep breathing - "In with health and peace"...."out with desease and pain" - over and over. As I go to sleep at night I instruct my body to heal itself. I also don't miss a chance to have someone pray for me or with me. I see myself as a survivor and have it written all over. I "visualize" situations - such as my 61st birthday - which I DID celebrated in September. I know statistically it won't be easy.... and I'll never be cured. However, I keep reminding myself that years ago at least 95% of women diagnosed with breast cancer did not survive - that's not the case any more. The drugs we are taking today were probably not available 4 years ago. Medicine is moving fast - will it help us .... they probably already have! My advice - do not be afraid - everyone has a terminal illness, it's called "Life", so that out of the way, focus on what you have, push youself when you don't want to, stay positive and talk to God - often... he listens.
God Bless you and all of us and our families and friends as we take our journey .....

Can you be my best friend?

Hi JDrayton,

do you mind if you share what regimen of chemo the doctors use?

thank you

marina