linitis plastica

wayahead2020 said:

My wife was recently diagnosed w/ this form of cancer.
My wife was recently diagnosed w/ this form of cancer and I'm of course extremely worried about her. I was wondering how things are going for your friend.

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 .....

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 .....

wonderful
it's really wonderful to hear someone with so much optimism. I hope you do beat this cancer. my mom and grandmother passed away from linitis plastica. It's still hard for me to get over the loss of my mom. I think and miss her every single day.

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 .....

Hi JDrayton
How are you doing? I loved your positive attitude. But I'm wondering how you stayed active during treatments. My husband was diagnosed in April with Linitis Plastica and started treatments on 5/4/09. He just has his second one last Friday and is still sick from it. I was wondering what your chemo was. My husband is taking Oxaliplatin & Epirubicin every 3 wks, plus takes Xeloda every day. They are thinking of doing surgery to remove the entire stomach after the 3rd treatment. Did you have surgery? Thanks for any advice and God Bless you.

Tonia11 said:

My husband had the same
My husband had the same exact chemo regimen for 3 rounds. Unfortunately, there was no response. His tumor did not shrink at all. But every cancer/person is different, so your husband may have a favorably response. My husband is now finishing his 3rd week of radiation. He'll have to undergo a new chemo regimen after radiation before they will consider surgery. When my husband was on "Oxaliplatin & Epirubicin every 3 wks, plus takes Xeloda every day", his biggest issue was break-thru vomiting. I call it break-thru because for the most part, he had the nausea under control thanks to zofran and kytril. The xeloda did turn the inside of hands very dark. And of course, there was the sensitivity to cold.

tumor size
I'm wondering how they determined that the cancer had not shrunk - endoscopy? We're not even sure what stage cancer my husband has. We know that the CT scan and PET scan showed it had not spread from the stomach. Do you know what stage cancer your husband has? or maybe when they will do surgery? I appreciate any info, and hope the radiation will work for your husband.

Manda258 said:

This disease is so horrible.
This disease is so horrible. My father was diagnosed with linitis plastica after seeing several doctors at the Ireland Cancer (University Hospital). They could not find this cancer immediately, as it does not show up on normal scans and biopsies. He was finally diagnosed Jan. 25, 2004. It was inoperable, stage 4 cancer. They put a port in his arm/chest with intentions of starting chemo, but he never made it that long. He passed away on Feb. 29, 2004. The quick and aggressive nature of this cancer is scary, but as he told my sisters and I before he died, "he had seen the world and watched his children grow up". I was 21 at the time and felt like a child still so it was hard to hear.

Everything I've found (which is so little) on this cancer maintains a very low prognosis (5-19% survival rate). I can't believe how rare this is and how little information is out there. I've also found that this type of cancer could be hereditary and am thinking of contacting a genetics specialists for more information. Has anyone heard anything about this or know anything?

I pray for all the family and friends who are dealing with this cancer and cancer in general. I truly hope we are getting closer every year to finding a cure.

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...

survivor2009 said:

Linitis Plastica Survivor
I was diagnosed on 8/7/2008 with linitis plastica gastric cancer at the age of 39. My tumor was taking up the majority of my stomach. Later that month I underwent a major surgery to remove my stomach and any other areas where it may have spread. I have a fantastic surgeon at the Allegheny General Hospital in Pittsburgh PA named Dr. Donald Atkinson. He was able to remove my stomach in one large mass. The cancer had spread to my spleen and one lymph node. He removed the spleen and several lymph nodes.
They conducted some genetic tests to see if I had the gene "CDH1" which has been directly linked to linitis plastica. This gene occurs randomly between a mother and father. They call it a 'misfire' of sorts. At any rate, my cancer was determined not to be genetic. They did tell me that this type has been linked to smoked foods. But you would have to consume massive quantities of smoked food. I love my bacon, but....that is not it. They also tell me there is no well defined known cause.
I underwent clinical trials where I had chemo and radiation. I just found out this past Tuesday that I am officially in remission. I must tell you that I truly believe you MUST have mind over matter in these situations. BELIEVE you will beat it....no matter how difficult it may seem.
My life will never be the same as I am still battling to gain weight and maintain my nutrients using a feeding tube but it is all worth it.....

Good lucki

Good News!!!
Thanks for posting!! This is Brian's one hope, if he gets strong enough, he can have surgery to remove the stomach. He has cheated death so far....as the Doctor told him last Thursday....His ascites subsided and surgery next week to remove the draining tube...it is so endless...He has chemo again on Wednesday. Thanks again for sharing your Good News!!

survivor2009 said:

Linitis Plastica Survivor
I was diagnosed on 8/7/2008 with linitis plastica gastric cancer at the age of 39. My tumor was taking up the majority of my stomach. Later that month I underwent a major surgery to remove my stomach and any other areas where it may have spread. I have a fantastic surgeon at the Allegheny General Hospital in Pittsburgh PA named Dr. Donald Atkinson. He was able to remove my stomach in one large mass. The cancer had spread to my spleen and one lymph node. He removed the spleen and several lymph nodes.
They conducted some genetic tests to see if I had the gene "CDH1" which has been directly linked to linitis plastica. This gene occurs randomly between a mother and father. They call it a 'misfire' of sorts. At any rate, my cancer was determined not to be genetic. They did tell me that this type has been linked to smoked foods. But you would have to consume massive quantities of smoked food. I love my bacon, but....that is not it. They also tell me there is no well defined known cause.
I underwent clinical trials where I had chemo and radiation. I just found out this past Tuesday that I am officially in remission. I must tell you that I truly believe you MUST have mind over matter in these situations. BELIEVE you will beat it....no matter how difficult it may seem.
My life will never be the same as I am still battling to gain weight and maintain my nutrients using a feeding tube but it is all worth it.....

Good lucki

Thank you for your post. I
Thank you for your post. I was just diagnosed and am struggling to answer my children's questions. I so want to see them grow up as they are 10 and 7 and need me so much. I am 43 years old and have no medical history other than the birth of two children. I am trying so hard to stay positive but am so scared. Your positive story helped to give me hope. I am so glad you are doing well and will keep you in my prayers.

Jennifer

jjrrsheldon said:

Thank you for your post. I
Thank you for your post. I was just diagnosed and am struggling to answer my children's questions. I so want to see them grow up as they are 10 and 7 and need me so much. I am 43 years old and have no medical history other than the birth of two children. I am trying so hard to stay positive but am so scared. Your positive story helped to give me hope. I am so glad you are doing well and will keep you in my prayers.

Jennifer

You are sweet to keep me in your prayers and I will do the same.

I was never able to have children so I was spared the heartbreak of trying to help them cope and understand.

I can relate to being young and diagnosed as I was 39 when I found out.

I don't know your story but I hope you will be able to have the surgery to remove your stomach without further complications.

Good luck!
Dana

Manda258 said:

This disease is so horrible.
This disease is so horrible. My father was diagnosed with linitis plastica after seeing several doctors at the Ireland Cancer (University Hospital). They could not find this cancer immediately, as it does not show up on normal scans and biopsies. He was finally diagnosed Jan. 25, 2004. It was inoperable, stage 4 cancer. They put a port in his arm/chest with intentions of starting chemo, but he never made it that long. He passed away on Feb. 29, 2004. The quick and aggressive nature of this cancer is scary, but as he told my sisters and I before he died, "he had seen the world and watched his children grow up". I was 21 at the time and felt like a child still so it was hard to hear.

Everything I've found (which is so little) on this cancer maintains a very low prognosis (5-19% survival rate). I can't believe how rare this is and how little information is out there. I've also found that this type of cancer could be hereditary and am thinking of contacting a genetics specialists for more information. Has anyone heard anything about this or know anything?

I pray for all the family and friends who are dealing with this cancer and cancer in general. I truly hope we are getting closer every year to finding a cure.

this diesease is so horrible
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.