Linitis Plastica

hi thank for your lovely message. Another victim it makes me so sad.. Well I am still here, very weak, very ill since christmass in and out of hospital, very thin, but my spirit is still strong. Waiting for a new revolutionary treatment that suppose to start in May in my hospital as a trial, its called T cell therapy and involves a lot of DNA coding, and scientific new methods, but I need to be strong enoughy to go on the trial, so I am trying, with Gods help I will make it as I believe that may be the future cure.  Just imagine if your friend finghts as long as me over two years, that treatment mights become available and successfull by then for all.  So dont loose hope till the end.  If the end comes I decided I willo faced it with dignity.  God Bless you all.

T

On 2/12/2007 Tutsi wrote:

hi thank for your lovely message. Another victim it makes me so sad.. Well I am still here, very weak, very ill since christmass in and out of hospital, very thin, but my spirit is still strong. Waiting for a new revolutionary treatment that suppose to start in May in my hospital as a trial, its called T cell therapy and involves a lot of DNA coding, and scientific new methods, but I need to be strong enoughy to go on the trial, so I am trying, with Gods help I will make it as I believe that may be the future cure.  Just imagine if your friend finghts as long as me over two years, that treatment mights become available and successfull by then for all.  So dont loose hope till the end.  If the end comes I decided I willo faced it with dignity.  God Bless you all.

 

T

Oh Tutsi, so glad to know that you are still with us.  Your strength is an inspiring pillar for us all to reach for.  My friend started chemo last week.  He went to the Mayo clinic for a second opinion and they varified that he was in the IV stage. The cancer is not in any of his organs and his lymph nodes are also cancer free at this time which is amazing.  The hope is that the chemo will shrink the cancer We've a long haul ahead of us but knowing there are people like you out there also fighting and surviving provides hope when hope seems a distant relative.  The doctor spearheading his treatment is Dr. Linn who comes to Seattle from M.D. Anderson in Texas and he has been really positive about directing Moses to really look this devil in the eye and fight back as inner strength knows no bounds.  Dr Linn also mentioned the hope that new medications and treatments are being discovered every day. Godspeed to the researchers!!! 

I want to thank you again for replying to this email.  It strengthens resolve in people to hear from a survivor.  Stay strong and I'm sending as much positive love and vibrations your way as is possible.  Debra

Debra,  I am very sorry to hear about your friend. I am suffering for more then two years, had tons of tests, went to many doctors, was in Mayo as well. Nothing to help me.

Can you please tell me what location did you go to Mayo, MInnessotta, Arizona, or Florida, and who was the doctor.

I would like to ask about the tests, what test showed the cancer?

What tests were done at your hospital, and as well at Mayo.

Please share with me.

Thank you.

Ed

hi ms t,

i am new in this site, i am looking for a site that will explain more about LP, i come across this site, which in  a way inspire me on joining.  My mom was diagnosed w/ LP last January 2007, she went thru surgery Feb 14, sub total gastrectomy. Before the operation series of examination was done by CT scan, Upper GI series and endoscopy, that is when the doctor suggest operation first, after which chemo therapy will be needed. we just went to the doctor yesterday for the result of the histopath, the doc refer us to an oncologist which we will be visiting w/in the week, i happen to asked the doctor if he can give us at least the stage of the cancer, they said stage 3.  As of the moment mom is doing well, she is now eating, b4 our operation we were informed that a total gastrectomy will be performed, that we will be needing to put her to ICU after operation to make sure she's doing fine.  But w/ God's grace it was not a total gastrectomy, only 3/4 of the stomach was removed, we didn't put her to ICU, though the operation took her 8 hrs plus 2 hrs for recovery, she was able to manage 7 days only at the hosp instead of 12 days, many good signs were shown by mom.  My concern now is that how will she be able to cope up w/ Chemo.... would appreciate any insights and suggestions from you please......

Thank you.

I have not been through stomach  removal myself as in the uk if the Lp is at 2 3 or 4 stage they do not reccomend this.  I have only had chemo for a very long time and so far I am not in remission but have kept on living for more than 2 years since diagnoses.  Not always well, not well at the moment.  I dont know how strong is your mum but chemo is not pleasant however she must think it is to keep her going.  New treatments come all the time and while we are staying alive the cure may just turn up.  She has to be positive. Many things will change she will not eat the same as before, she will probably loose weight, but it is about adjustment. 

So keep her spirits up and if you believe in God pray for her . It really helps.  God bless you both.

T

Thank you very much for your reply..... so far mom has a very high positive attitude, currently she is undergoing a series of vitamins injection, doctor said its vitamin B..... Her chemo will start on March 16.  

Honestly I am very afraid, I've been doing a lot of reading, some of the article I read are so depressing saying it will only be for 4 to 6 mos only.  But when I read your article and other's from this site, it gives me additional hope.  I am praying very hard to God, that if He will still lend her to us please help us do the right things for her, but if it is her time to go please do not let her experience so much pain.  Everytime I look at her I can see how determine she is to get well, that makes me thank GOD so much, I can feel HE is with us every step of the way.

Thanks

Hello Tutsi,

 I just wanted to tell you that I'm praying for you.  I have a close friend who was diagnosis with LP about 1 year ago.  I found you, by way of this web site while researching for treatments.  You've been an inspiration to me and I shared your earlier messages with him and his wife to give some hope where the doctors were not offering much of.  I pop in from time to time to check on your progress and your often in my thoughts.  I'm sorry to hear your having a set back at this time.  Your positive spirit shines though your posts.  You have been in my prayers often.

He's been on chemo for the better part of the year with a few set backs in white count and now an adventure in pancreatitis. He's been on Doxirubicin, Cisplatin and continuous 5FU.  He's worked through most of it, taking a rare day off as needed.  He is truly an inspiration to the power of a positive spirit.  He has a lot to live for and he's doing his darndest to do so.

I will continue to keep you in my prayers.

Good morning all,

i have been reading your responses this morning and for the first time feel compelled to speak also.

My father was recently diagnosed with LP and the butchers who feel they have the right to add the letters "Dr" in front of their names were very vague and dis-interested when t he first started going to them for his ailments.  Their notification to us of their finding was nothing short of atrocious, yet they got paid and their life goes on.  I'm sorry but I'm sure you can tell I'm very angry.  not angry at the fact that my father has this but angry at the fact that doctors are like this - with others also. 

My father was recently diagnosed and we have modified his diet drastically to include only organic and to eliminate any acid in his body.

All the victims of this nasty ailment who have spoken here have really touched me.  i feel like I've been given a hug by all of you - and you are the strong ones so from the depths of my soul, I really do thank you.

I am in my mid 30's and feel like a 7 year old little girl seeing my father like this as he means the world to me.

but there is one thing that I have come to realise through my own research of this terrible cancer.  There is a couple pieces of information which doctors do seem to know and do tell us.  i have also read two statements which are also key to survival which hit me between the eyes like being socked by a baseball bat.

Cancer cannot live in an Alkaline body

and

Cancer cannot live in an oxygentated environment.

So whether my father decides to undertake chemo, radiation, pills or whatever treatment, reduction of his acidity and boosting his immune system to the max is the one thing that can ensure a good chance at fighting this and any other cancer.  the chemotherapy can only do so much but if your immune system is shot, how can you expect the chemo to do what it's supposed to do?

Tutsi, you are a blessed soul.  My thoughts are with everyone who has a loved one, friend or even an aquaintance suffering from this or any kind of cancer as I wouldn't want this for any living creature.

My nerves may be shot, I may be dancing one minute and in hysterical tears the next, but I'm also a very stubborn little squirt and will do everything and give everything I have to give this bug the biggest fight it's ever come across.

If you want to take my dad, BRING IT ON!

On 3/11/2007 Maraki wrote:

Good morning all,

i have been reading your responses this morning and for the first time feel compelled to speak also.

My father was recently diagnosed with LP and the butchers who feel they have the right to add the letters "Dr" in front of their names were very vague and dis-interested when t he first started going to them for his ailments.  Their notification to us of their finding was nothing short of atrocious, yet they got paid and their life goes on.  I'm sorry but I'm sure you can tell I'm very angry.  not angry at the fact that my father has this but angry at the fact that doctors are like this - with others also. 

My father was recently diagnosed and we have modified his diet drastically to include only organic and to eliminate any acid in his body.

All the victims of this nasty ailment who have spoken here have really touched me.  i feel like I've been given a hug by all of you - and you are the strong ones so from the depths of my soul, I really do thank you.

I am in my mid 30's and feel like a 7 year old little girl seeing my father like this as he means the world to me.

Hi,

I saw your post and felt compelled to reply.  I completely understand your feeling like a 7 year old.  I lost my father 11 years ago to prostate cancer (advanced at diagnosis, should have sued the "dr" but didn't want to rock the boat, age at dx. 52, remission for 4 years).  I felt exactly like that, like a little girl watching her big strong daddy fall apart and it scared me horribly.  It also made me stronger.  As I helped him with simple tasks in life, emotional support beyond what a daughter should provide for a father for any reason, and kept the family together and informed.  I, you see am a nurse.  I was a damn good ER nurse, but now I'm an even better oncology nurse.  My father taught me how to listen.  I learned my most important lesson from him in those years.  When someone says "you have cancer" you've now stepped into the "Twilight Zone" or "The Outer Limits" and your life is never the same.  You will never see life the same, see yourself the same, or feel a twinge the same. 

My heart goes out to each survivor no matter what stage you are at.  Sometimes I feel I'm "cold" and have to be reminded of my dad.  I can't let each patient affect me like he did or I'd never get out of bed, but a good old jolt keeps me at my best. I can not praise family members enough who are the support, fighters on the side.  Be there for you dad.....sometimes the medical community is overwhelmed, your the eyes, ears, and heart that keeps us on our toes (as we should be).  I often wonder if my father would have just passed away without even being diagnoses because a swollen, and I mean 3 times it's size swollen, leg was not addressed medically but a recommendation of a "golf vacation" was suggested without a single test ordered.  I was my dad's champion (a bit to late though because he didn't want to burden any one) and demanded he go to the ER, for a non emergent issue, even though I knew it would be a long wait, upset my mother, and prevent that planned "golf vacation".  I've sence gladly produced the name of the "dr" who failed him at ever turn in my life.

I guess I really didn't have a point here, but to say my thoughts are with you.

And as always, Tutsi, your in my prayers.

On 2/17/2007 Vtech wrote:

Debra,  I am very sorry to hear about your friend. I am suffering for more then two years, had tons of tests, went to many doctors, was in Mayo as well. Nothing to help me.

Can you please tell me what location did you go to Mayo, MInnessotta, Arizona, or Florida, and who was the doctor.

I would like to ask about the tests, what test showed the cancer?

What tests were done at your hospital, and as well at Mayo.

Please share with me.

Thank you.

 

Ed

Hello Ed,  So sorry it's taken me months to get back to you.  I've been working nonstop on a benefit for my friend to raise money for his cancer treatment etc.  Moses (my friend) went to the Mayo in Minnesota for his 2nd opinion and unfortunately diagnosis was confirmed as Stage IV linitus plastica.  You ask about how they finally found his cancer. After a wide range of tests: colonoscopy, endoscomy(sp?) cat scans, MRI...you name it, he had it twice.  Finally he went in for bloating and they extracted 2 liters of fluid from his stomach lining and upon investigation of this fluid his cancer was diagnosed. Aprx. 8 months later.   This was all at Group Health hopital in Seattle.  Fortunately for Moses, Seattle is home to Fred Hutchinson Cancer Research Center and The Cancer Care Alliance and it is here that he has started his Chemo under the watchful eye of Dr Linn who is an alum of MD Anderson and is thankfully well versed in treating this rare cancer.  Moses is living with cancer beautifully. He's still working doing landscaping  and eating as much as he can,trying to gain weight.   He's going through his 2nd more aggressive round of chemo and at this point and seems to be responding quite well.  We all have high hopes.

Hope this info. finds you well.  Peace,  Debra