linitis plastica

24

Comments

  • vijendrasnv
    vijendrasnv Member Posts: 15
    joey37 said:

    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.

    Hi,
    It’s really wonderful

    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.
  • LWJ
    LWJ Member Posts: 2
    glocat said:

    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!!

    Wondering?
    I am new to this site. I was reading about Brian and was wondering how he is doing? Is he still taking chemo?

    My mother who is 78 was diagnosed with linitis plastica of the stomach around March of this year. She went to a surgical oncologist in Birmingham, AL but the cancer was inoperable. It had spread into the abdominal cavity and into the fluid around her lungs and heart. She also had signal intensity on her CT scan around her kidneys and inflammation of the ureters. We later saw an Oncologist in Dothan, AL who started her on 5FU chemo via a pump which she wears 24/7. She had a repeat CT 4 months after starting the Chemo and the kidney area was normal all other areas were unchanged. We felt like this was a good report. She is stable just very weak with little or no appetite. She has lost about 25 pounds since first being diagnosed.
    From what I can read the prognosis for this cancer is not good. This chemo seems to be holding the cancer at bay, but mother's appetite has got to improve. She also doesn't have much energy, which I am sure is from a combination chemo and poor appetite. We keep encouraging her to eat and at least get out of the house some. Unfortunately I live about 5 hours from her.

    Anyway, I was interested in how things were going for ya'll. If anything new had taken place. I will keep you in my prayers. The Lord is always in control.
  • Daniellevl3
    Daniellevl3 Member Posts: 1
    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 .....

    help.
    My name is Danielle, and im a seventeen year old girl from Long Island, Ny. My mother was diagnosed with this type of stomach cancer January of 09. She recieved 3 months of chemotherapy and then had her entire stomach taken out, along with part of her intestines and esophogus. She is supposed to be having 6 more months of chemo and she has about 2 more months left. Lately, everytime she eats she has been getting pains in her stomach that wrap around to her back, and she complains that she feels like the food is stuck in her throat. The only way she can releave the pain is if she throws up. This has been going on for the past 2 weeks and im starting to get very worried about her. She has lost i think about 40 lbs and she is very weak. I dont know much about this cancer but i know it is very aggressive. I havent really tried researching it, but now that i see how serious it is, im willing to do anything to help her. the thought of loosing my mom at 17 is in my head every day when i wake up and go to bed at night. I love her so much, and i would really appreciate any advice anyone has. She went to the hospital today and got a cat scan which showed nothing, and her doctor doesnt know why she is having these pains. She is not on a specific diet because anything that she eats seems well enough because she needs to gain weight. Please if anyone knwos anything i can do please help. My e-mail address is daniellelaimo@yahoo.com
  • Tomissimo
    Tomissimo Member Posts: 37

    help.
    My name is Danielle, and im a seventeen year old girl from Long Island, Ny. My mother was diagnosed with this type of stomach cancer January of 09. She recieved 3 months of chemotherapy and then had her entire stomach taken out, along with part of her intestines and esophogus. She is supposed to be having 6 more months of chemo and she has about 2 more months left. Lately, everytime she eats she has been getting pains in her stomach that wrap around to her back, and she complains that she feels like the food is stuck in her throat. The only way she can releave the pain is if she throws up. This has been going on for the past 2 weeks and im starting to get very worried about her. She has lost i think about 40 lbs and she is very weak. I dont know much about this cancer but i know it is very aggressive. I havent really tried researching it, but now that i see how serious it is, im willing to do anything to help her. the thought of loosing my mom at 17 is in my head every day when i wake up and go to bed at night. I love her so much, and i would really appreciate any advice anyone has. She went to the hospital today and got a cat scan which showed nothing, and her doctor doesnt know why she is having these pains. She is not on a specific diet because anything that she eats seems well enough because she needs to gain weight. Please if anyone knwos anything i can do please help. My e-mail address is daniellelaimo@yahoo.com

    Info
    I certainly wish your Mom the best and hope she can recover from her ordeal. Food getting stuck isn't unheard of. The best thing she can do is to take very small (baby size) bites of food and chew very, very thoroughly. I'm somewhat surprised that the surgeon would not mention it, but as I had a similar surgery to what you described sometimes an endoscopy is required to stretch the esophagus out because the scar tissue swells or grows to cause discomfort/pain in swallowing. I had that done twice in the first six months after the operation. I'm two plus years out from my surgery though I have not needed it since. However for me I did notice (last two springs) that pollen seems to aggravate it and cause some pain/tightening around April each year.

    Much of the pain she may be receiving could be caused due to "dumping syndrome". Unfortunately the best I can offer there is to keep a journal of what she eats and when she feels the pain to see if it is related to a specific type of food. For me anything sweet as a dessert type and dairy caused me much of the pain.

    My Dr's normally told me it was approx 10 to 12 months before things felt "normal". For me it was more about 18 months. I ultimately lost 60 lbs before i recovered 10 of that. I was 165 pre-treatment and dropped to 103 at my lowest and have since settled at around 113 lbs. It was about 2 yrs before I settled at that limit but have been there for several months now.

    As a note, my surgery was total gastrectomy (stomach removal) and bottom third of the esophagus. My tumor was at the junction of the esophagus and stomach stage IIIa because it was through the lining of the stomach and 2 lymph nodes infected.
  • sarahvhobbs
    sarahvhobbs Member Posts: 2
    I can only tell my story
    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.
  • sarahvhobbs
    sarahvhobbs Member Posts: 2
    joey37 said:

    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.

    I feel bad being honest
    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
  • joey37 said:

    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.

    Hi
    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!
  • jjrrsheldon
    jjrrsheldon Member Posts: 2

    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

    Just checking on You!

    Just wanted to say that your story still gives me a chance to hope and believe in restored good health. I hope that you are still surviving and enjoying life fully! I am currently on Taxotere and have had a positive response to chemotherapy but my optimism seems higher than my oncologists. I am currently exploring alternative/complementary treatments and was wondering if there were any that you used at the same time.

    Many blessings,

    Jennifer
  • kenandkat
    kenandkat Member Posts: 3
    joey37 said:

    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.

    Husband gastric Adneocarcinoma stage 4 Oct 09
    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.
  • kzuraek
    kzuraek Member Posts: 1

    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

    wondering how you are doing
    I read your entry and was given so much hope. My mother is fighting this disease. She has had her stomach removed, spleen and lymph nodes. However, it is in the lining and she is stage IV. I am researching how others have handled this and trying to learn from their experiences. She has started chemo (5FU, epuburicin, and cisplatin). I am reading up on alternative means to help her. Anyways, your story stood out to me and I would love to hear how you are doing. I am praying for you and hoping to hear great things.
  • KandyRoatan
    KandyRoatan Member Posts: 2

    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

    Hope
    Jennifer,

    I am 39 yrs old and I too have kids, 9 and 6. I was diagnosed in Feb of this year and have been undergoing chemo since March, I thought I was done. I just recently did an EGD which biopsied my stomach and 1 of the 4 tissue samples came back positive therefore my doctor wants me to do another round of chemo this time with radiation. I will start again in Nov.

    How are you doing? I hope and pray all is well.
  • KandyRoatan
    KandyRoatan Member Posts: 2

    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

    You are an inspiration. One
    You are an inspiration. One day soon I will say it too, that I am in remission! I hope to defeat this alien that has invaded my life after this next chemo/radiation treatment. Thank you for sharing your experience!
  • slcarp72
    slcarp72 Member Posts: 1

    Hope
    Jennifer,

    I am 39 yrs old and I too have kids, 9 and 6. I was diagnosed in Feb of this year and have been undergoing chemo since March, I thought I was done. I just recently did an EGD which biopsied my stomach and 1 of the 4 tissue samples came back positive therefore my doctor wants me to do another round of chemo this time with radiation. I will start again in Nov.

    How are you doing? I hope and pray all is well.

    Hi
    My Mother died from this cancer December 2, 2006. It was such a rough cancer to deal with. How are you doing now?????
  • alexandra1126
    alexandra1126 Member Posts: 2

    Thanks so much for your
    Thanks so much for your encouraging words.My friend actually started chemo today. He lives in northwest Indiana. His initial tests and screening were in Indy but he is receiving treatment closer to home. His oncologist actually has a much more positive outlook than the specialists he had seen before. He was very surprised today to find that the cancer has not affected any of his other organs yet. Last month he had an operation during which the surgeon observed that the cancer had spread in hundreds of little spots throughout his abdomen. I guess they expected it to have invaded the other organs by now, but thankfully it has not.
    I am thrilled to hear about your dad. Unfortunately from what I have read this cancer is pretty aggressive and "sneaky". I do believe in miracles and everyone I know is praying for Jose'. He is actually by best friend's (of 20 + years) husband. He is probably the most easy going guy I've ever met. He is fighting this cancer with all he's got and while I spend countless hours worrying about what will happen I do have hope that soehow he will pull through this. He has been very ill and his oncologist believes the chemo will help relieve a lot of his pain. Our hope is to then try some alternative approaches and nutritional plans to fight the cancer cells and regrow healthy ones. Do you know about the cottage cheese and flax seed protocol? It has been very successful in Europe and I have read that evry cancer patient should follow this sepcific diet. Let me know if you need info.
    i will keep your mother in law in my prayers as well as your Dad. I know God has a plan but I sure do hope it includes a miracle.

    information sharing
    Hi JuliaLynn,

    I read your post and it was very similiar to our situation. My mother was diagnosed with linitis plasica about a week and a half ago. We also live in NW Indiana, and were at a local hospital. They were extremely discouraging there and told my mom to do nothing. She just turned 53 and still looks and feels pretty well for the most part. I had her transferred to Indy and she received her first chemo treatment last night. I would love to share information with you because we are not giving up! I am interested in checking out diets, alternative methods, etc. Anything that might bring about healing.
  • alexandra1126
    alexandra1126 Member Posts: 2
    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 .....

    thank you for the encouragement
    My mother was recently diagnosed with linitis plastica. The doctors told her to do nothing. I had her transferred to Indy and she received her first chemo treatment last night. I appreciate your encouraging post and will share it with my mother when she is ready. I will be taking care of her and want to surround her with positivity and hope. I will check out that book you referred to and maybe we can read it together. We are committed to work towards healing every single day.
  • Bill R
    Bill R Member Posts: 4

    information sharing
    Hi JuliaLynn,

    I read your post and it was very similiar to our situation. My mother was diagnosed with linitis plasica about a week and a half ago. We also live in NW Indiana, and were at a local hospital. They were extremely discouraging there and told my mom to do nothing. She just turned 53 and still looks and feels pretty well for the most part. I had her transferred to Indy and she received her first chemo treatment last night. I would love to share information with you because we are not giving up! I am interested in checking out diets, alternative methods, etc. Anything that might bring about healing.

    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
  • Bill R
    Bill R Member Posts: 4
    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 .....

    I was diagnosed Nov 2012
    Hello JDrayton -

    I read your post and it gave me encouragement.

    How are you doing today?

    Doctors are testing fluid build up in my abdominal cavity to see if it tests negative for cancer cells ((we are praying). I will be taking my first PET Scan next week. We are praying for negative results on both. If negative, next step would be to operate to remove portions or all of stomach.

    I would love to correspond with you.

    Also, can your doctors at Georgetown Univ or at MUSC in South Carolina recommend specialists in California. We live in Huntington Beach, CA.

    Thank you.

    God Bless You

    Bill R
  • Bill R
    Bill R Member Posts: 4

    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

    Linitis Plastica Survivor
    I read your post and was encouraged.
    I was diagnosed with this disease this week - Nov 15, 2012. They have drained fluid build up in my abdominal cavity and we pray that it tests negative for cancer cells. I take a PET Scan next week to see if it has spread.

    I would love to correspond with you for information.

    Also, can your doctors / specialists recommend doctors in California that specialize in this disease? We live in Huntingtton Beach, CA.

    Thank you for your post. Please let me know how youi are doing.

    Bill R
  • Bill R
    Bill R Member Posts: 4

    information sharing
    Hi JuliaLynn,

    I read your post and it was very similiar to our situation. My mother was diagnosed with linitis plasica about a week and a half ago. We also live in NW Indiana, and were at a local hospital. They were extremely discouraging there and told my mom to do nothing. She just turned 53 and still looks and feels pretty well for the most part. I had her transferred to Indy and she received her first chemo treatment last night. I would love to share information with you because we are not giving up! I am interested in checking out diets, alternative methods, etc. Anything that might bring about healing.

    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.)
  • Elan16
    Elan16 Member Posts: 1
    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

    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.