Linitis Plastica

I am sorry there is another victim out there of this ilness. But she can beat it or at least live with it for as long as he can. I dont vknow how USA works with the Drs but any good stomach oncology specialist will be able to treat her correctly. At the moment the treatment is same as other gastric cancers. Othr things I do is keep clean organic diet as much as I can, although I now just follow what my body wants and feels is right. Also I try to follow my blood groop diet. It makes quite a bit of sense. I was very ill and now two months on, 3 moresessions of the new chemo and I am up again, been away on two hols already. I love travelling and never have given it up because of this.

Ultimately my way of thinking is I have 50% chance to live or leave for the other side at any one time. Either way the decision has been made long before all of this happened. But when you think about it so does everyone else. Every day we all have 50/50, just dont think about it when things seem normal. Its hard at first to accept things and still feel normal, but it does come. Tell your mum to live her life as much as possibe the way she did before she knew about this. I know treatment prevents many things, but its not necessary to stop living, just slow it down. Mental strentgh is within but also its important to have support of friends and family around. You seem such a lovely son/daughter and thats already wonderfull for your mum. As far as books just look for any cancer surviving books and choose some. I have read many - some are good some are not. Francisco Contreras "The coming cancer cure" i liked a lot, it was the very first i read at the beginning and it lifted me immensely. Also many good Christian books can help depending on your mum's believs, but I found myself much closer to God since I have been ill and have felt his help many many times. All you need to do is learn more about it, ask for help and trully belief. Ask for each day alone and be gratefulc every day she awakes, because many would have not be awake that very same day.

Hope she is strong, i am living with this for 18 months plus since diagnoses now and intend to carry on, I believe i will survive this and thats what your mum needs to do, its an ilness but does not need to control her, she can control it..

Other things I have found helpfull to cope with chemo - reflexology - really helps and relaxing/meditating CDs.

God be with you and your mum. All the best and prayers your way.

Tatiana, I wantedto aske you about your laparoscopy, how was it, did it give information about your stomach, please read my info, it is long, but may be you can help me with advice. I asked my surgeon for laparoscopy, but he said he can not justify this procedure.

Thank you

Ed

If you are worried instist on it. yes it gives complete information, also about what is going on around the stomach as well. You are put to sleep for a 30 mins, its quick and its totally fine.

T

I have heard it takes general anastesia to go thru this procedure. Please tell me how it was in your case, was it a decisive information, why laparoscopy, is it because everything else did not work, and only one way to see it is to look inside. Does everyone have to go thru this?
Does Endoscopic Ultrasound show anything at all?
CT scans, MRIs?
Thank you

Ed

Tatiana,

I just came back home, so sad, disappointed.
The doctor sent me to a physologist, who asked me questions if I lost interest to some things in life. Of course. So she put me on antidepressant, and gastroenterologist, who I saw after her, said the same things.
I insisted on CT scan, and that was it. They said I am depressed, so Mayo CLinic sent me home.
So much for a such a big name. I am in pain, I have nausea, It hurts me all the time.I do not know what to do next. I can not convince them that it is serios.
But on the other hand I read all these messages, and see no hope once you diagnozed like this. So what is the point to go and humaliate yourself, beg for their attention.
I wish I did not speak with that phycologist, but I thought they were there to help me.
I do not know what to do next. Somebody, please, give me an advice.

Ed

Dear Ed, I am sorry about what you are going through, but may be you really do not have this ilness, you mentioned you are eating well. That is the most important sign with this particular cancer. You will not be able to eat a full or even half portion of anything. Try and relax. You are reading our messages and you are panicking but we have been dignosed with this illness, we have been going through a variety of treatments and so on and so on.

It seems to me you had all the possible test, and biopsies, and perhaps and praise the lord you dont have this or any other cancer.

I think so many people have given you advice but ultimately we are patients and not Drs. It seems best to me at the moment to try and relax and do things you like doing and enjoy what you can.

I pray for you that you clear.

Lots of support through your difficult time.

T

Tatiana, I am the one that went to Mayo and was diagnosed with depression. I tried those pills, Cymbalta, and Pamelor, it helped for a while, but now it started again. I am making an appointment with Mayo again, and I am very scared, since I read all messages, and know if I have it, it is late, nothing will help. But, still have to go and ask if they can help me. I am eating normal portions, stopped Pamelor, and continue Cymbalta. Please tell me what should I ask them to look for, please help me with advice.
Ed

Hi,
I stumbled on to this msg board in my quest to find more information on LP. My partner was diagnosed with this cancer today. He had had an endless round of endoscopies, CT Scans, etc, which only showed a thickened stomach wall. An attempted laparoscopy was too risky as the doctors thought he had a lymphoma and were afraid his stomach would leak, and so the finally did a laparotomy 2 days ago. We got the biopsy results today.
Just wanted to thank you Tutsi for all your posts on the board. It has comforted and encouraged me more than you could ever imagine. When my partner gets back from the hospital, I'll get him to read your posts too.
If he recovers from his surgery well, we'll start chemo next week. The oncologist has recommended the ECF regimen.
Oh and BTW, he's 32 this year. So I guess his age will work for him. We've set our mind to defeat this thing together.
May God continue to walk with you every step of the way.
Thanks again,
Vivien

Hi Vivien

 

I have only just seen your message, sorry answering so late. But just wanted to ask how are you and your husband.  I hope he is still alive and fighting. I have had two very bad spells this year, the last one in hospital for 10 days all over the christmas period.  My new immunjology treatment did not work and now the cancer is in the bowel.  Back on strong chemo cocktail, hardly can walk the steps in my house, lost much weight, but still here, tomorrow will be 2 years since my diagnoses.  Two hard years, but two years of living.  Life is so precious, any extra is a bonus.  We are not in control of our time here, any given is a privilege, and I do believe we go to a better place one day.  I dont know how long I will have the strenght to fight.  Times have been so hard I think I am ready for a piecefull solution even if that means dying.  I just feel so sad for my family and what they are going through around me.  But still I dont have control over how long the battle will be and when is it going to end, just bravely get on with it.  This is my battle in life - cancer, we all have some battles to fight, and I am sure there are even toougher battles our there for many.

 You and your husband are so young, it seems so unfair, but bad things to happen to good people, to very good people, maybe there is a reason, the other place is much nicer perhaps, it is all a mystery, a journey, but it will have an end, somehow.

 

God bless you and what ever you are going through, stay strong, stay loving and stay positive.

 All the best

T

Dear Tutsi,

My good friend and co-worker was just diagnosed with linitus plastica on friday.  He is a young, otherwise healthy mexican native that has been experiancing the weight loss, throwing up symptoms since July.  In August we finally talked him into going to the doctor (he hates doctors and hospitals) and after rounds and rounds of CT scans, endoscopies etc...they finally diagnosed him Friday.  We are sickened, to say the least, although his attitude is incredible.  Reading all your postings has been inspirational to me and I have passed them on to him and his girlfriend.  The lack of information that we are experiancing is disheartening and we could really use some information regarding expertise in this area of cancer where we live, which is Seattle, WA, or anywhere else in the U.S or British Colombia . When he was given the diagnosis he experianced some of the same things other people had experianced as far as not being given much hope.  This is awful...I just don't get that kind of negativity as far as helping an individual fight for their lives.  We're rallying around him and trying to help him with gathering as much information as we can find on the subject, so if anybody reads this and has information to share, please email me .   And Tutsis, god bless you and thank you so for sharing your story.  I don't know if you realize how very much it helps to read about treatments and survival stories. 

I am sending you my prayers!! Debra