Cancer Survivors Network

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.

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 .....

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.

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.

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.

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.

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.

Hi my father has been diagnosed with the same type of cancer as you were....he is 64 and he had a total gastrectomy on last saturday. My english is not so good but i felt so happy when i read your case. Hope and faith are the most important things...whas going on with you?
Sorry about my english.
My best for you.

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

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.

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 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

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!!

I am so glad to hear you got something positive from my post.

One thing I would like to say for 'you'........as a cancer patient I know what difficulties Brian is going through. However, also recognize what you need. My husband has been my hero, my rock, my everything. He has gone through so very much. If there is one take away from this post it is to commend you for sticking by Brian's side through thick and thin. Still today I can see on my husband's face how much of a toll this has taken on him. Sometimes he sits and stares at me in a way that makes my heart do flip flops. That is one treasure you can give Brian that only he will know the full impact.

I had cisplatin, eppyrubicin and 5FU chemo treatments to kill any of the cancer that may have been left behind after surgery. Brian is just the opposite, chemo is trying to kill the cancer enough to allow for surgery. The chemo itself is very destructive to the body. Whatch him closely, there can be nerve damage too. I was recently diagnosed with neuropathy which is permanent nerve damage in my feet.

Have they tried any type of radiation along with the chemo? I did have radiation in the abdomen area. I see you mentioned Brian has actual bumps protruding, I wonder if radiation directed to that area would help. Of course I am not a doctor but sometimes people discussing things brings out thoughts and ideas. My oncologist listened and acted on every single word I said. If I said I had a headache today she will jump on it with multiple other questions and help.

Your doctor said point blank that Brian is dying. I would like to say point blank that Brian is fighting the battle of his life. He may not survive but you know what...he may survive. It is SOOOOO hard but I had a cousin's child of 17 killed in a horrible car crash a few months before my diagnosis and I kept telling myself that Casey would have given anything to have been able to fight.

So fight sweetie.........keep on fighting and don't let anyone tell you not to!

Good Luck

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.

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

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

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.

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

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.

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!

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.

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 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.

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

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!

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.