Does anyone have a Gist tumour?
They are rare and usually occur in the stomach wall
Hi Jacqueline
i have now had a total gastrectomy and spleenectomy after 2 gist almost 5 years apart I am on glivec now and have scan every 3month and see oncologist for result I do hope you are feeling better
Hi Jacqueline
I am a 59 year old male and have had my GIST removed and am on 400mg Glivec daily with all of its associated side effects. I am very high risk with both markers, I take each day as it comes and have a great support network which helps a lot when needed. I am under Christies and Whitworth medical centre who have been brilliant.
let me know if I can help in anyway.
Michael McNamara
Hello I just thought I would pop in to my loney Gist forum, on the off
chance anyone had joined in, as we are a bit of a rarity,and here you
are.I am an owner of a tumour, don't know how long I have had it,and
neither do the medicals, who on discovering it ,decided I should have my entire stomch removed, to which I said no. Iwas then passed to another dept, as they were no longer interested. The "new" dept
decided that I would be given drugs ,again I refused, having read
the horrendous side effects these drugs caused So ,I have a C.T
scan every six months, when they remember to ask me .
I strongly believe that ASPIRIN caused this tumour (20 yrs of this
drug) so, I stopped taking it, about four years now.
My lump has stayed quiet ever since and I just regard it as a non
paying squatter, and seldom think about it.
There is a support group of sorts, which consists of a meeting
with a non Gist speaker ,a cup of tea ,then they chat ,this is
when I become invisible (ignored ) so I didn't see the point in
going to a three monthly meeting
You are obviously in THE best place for lots of attention ,I am not
Nice to hear from you ,don't disappear.
Jacqueline
Hello, at last, I didn't there was anyone out there, only me. so I popped in and out a few times and looked at zero response, I didn't realise it
was seven months ago. Well, I am still vertical. how are you ?????
Hello again, I missed out the word "think" .at least my brain still notices
things !!!!!
Hello again,, looooooooooong time since we had words. My
squatter (GIST ) and I are still together. I think, Silent and no
tweaks .It's over a year since I have been summonsed for a scan,,,chat,,,, not even a note, so ,I think that I have been
discarded.or shredded..
Hope you are VERY well, and coping with those god awful side
effects . I made another choice about prescription drugs,,,,
I don't take any at all,, I started browsing the herbal stores, to find alternatives, and a sense of curiousity.
Do ,reply to this ,if only to say hello 
Hi Jaqueline,
I randomly found myself on this site and had forgotten that I had posted before and came accross your reply, it has been a long time since I last visited and your 'unpaying guest' made me smile. I don't often feel the need to chat, however, sometimes it is nice to reconnect and to realise that although we have a very rare and compicated cancer, none of us are alone. Sending you a BIG Hug and sincerely hoping that you are coping as well as you can.
Michael
Hello you ...It's eleven months since I told you NOT to disappear,
However, as you have sent a hug,,, I forgive you.
My squatter is , I think in residence, but I it is relaxing big time.
It might even have gone . It gets nothing to keep it going now.
namely Aspirin. So, there is nothing to cope with. are you still on the
god awful drugs ????
I did join the Gist Support group in Sheffield, most boring bunch
of people I have ever met, so,, I unjoined . I also wrote to the
group in the USA. if you can, look them up, if nothing else
you will be awash with Gisters ,mailing you. and wanting to know all about your ""lump""
Now ,Tell me that you are coping ---- bad word---- I work on the
principle that if I am vertical, I am O.K
Jacqueline
Hi Jacqueline
I am still on the drugs on a daily basis and have 11 months left on the daily chemo, side effects are nasty a lot of the time but manageable. I am not a 'why me' kind of chaps it simply is what it is, I joined the McMillan Gist group online of course and don't feel the need to go to 'group meetings' at all, it is simply nicer to touch base with friends who have a positive outlook on life online instead. Do you still have 6 monthly scans?? the little rascals - was going to say B*st*rds- but was feeling too polite - maybe keeping quite but it is good housekeeping to keep a scanning eye on them.
Life is pretty good on the whole, fatique gets me often BUT life goes on for as long as it can. My oncologist has given me a 16% chance of suvival when a stop taking my 'Glivec' so it is not all bad.
What is the address of the Gisters in the States, going overthere to visit with my Daughter who lives in Houston TX sometime soon.
Saying of the day 'If things don't change soon, they will stay the way they are' 
Michael
Morning, I see the Moderator is on the prowl again. Did you spell
something incorrectly, ??? whatever!!!!
Wanted to ask you if your life is not as happy as it could be, and does
it revolve around your tiresome lumps. You said they had been removed ??
IThey wanted to remove my stomach,,my whole stomach..but I said
No way,Main reason being that the hopital in question is a teaching
hospital. full of learners,eager to get their sticky fingers inside
bodies. I had two bad experiences with them, and will not have
any more tampering with my body.
I followed my "GUT" feeling about it's removal. and, my decision was
right. Do you belong to a Support group ?? The one here benefitted the guy who ran it, he was constantly going off to gatherings of Gisters
all over the country. The rest of us had to do with a 2 monthly meeting,
where a person ,came and gave a talk about nothing remotely
connected with lumps ,a cup of tea, and a chat, in which I was
totally ignored .so as I said, I told the organiser I didn't see much
point in the meetings.
Ihave a couple of other untreatable conditions ,but they get the
same treatment as the squatter ,,, I ignore them ,and take no
prescription drugs ,prefering to use herbals. NO side effects at all.
So life chugs on
Are you on Glivec fo r ever,? I did read about the side effects, and the
American gisters are very prolific about the effects of the drugs
they take
Now, as the moderator has shredded your last mail.. do another
one, and,,,, answer the questions , PLEASE
Got a lot of gardening to do today ,I pay to have the "Green bin
emptied, at the moment ,it is empty.and next Monday is the day
suppose you are still snoring ,I'm on my first coffee ,in bed of course
Jacqueline
Hello. Iv'e just been gardening until I turned Puce, not my favourite colour !!!! Just checking to see if my appt for some physio was O.K
and ,there you were. Can't understand what made the Moderator put you on hold. I
I haven't been scanned for my squatter for 18 months as I said, every one I had ,the message was the same . ""It's not moving "" so. we
are all happy . I have just had a course of B12 injections, seemingly
I was a bit short of it. Bouncing all over the place now.
Did feel a bit ""Can't be bothered "" before the shots.
Can't remember the address of the USof A .I shredded everything to do with any of them .will trawl through obselete addresses, but I tend not to keep things no longer interesting .. This is not to be an excuse
for you to delete me //!!!!
Why are they stopping your treatment ??
When you go to TEXAS ( how long for)?? ask your daughter to look on the internet for Gist whatever .I seem to recall a member lived in Texas who mailed me. in fact ,they came from all over.
You will receive a huge bag of lettere and info. and a nice purple
wrist band
What do you do for fun ??? I go riding (horses ) and I have a rather
fast sports car ,that I drive anywhere and everywhere ,love driving.
As I am on the edge of Derbyshire I roam all over it. Not so much at the moment, . TOURISTS get in the way.
i really am glad you tuned in, 
colour of my face at the
moment. I love these faces
Jacqueline
Hi, try this.
on google gist support groups in America,,
Morning Michael..did you find anything interesting ??
Looks as though you have done another runner !!
Ah Well,,,,, I did my best.
Jacqueline
Hello Houdini...found a really informative site ,thought you might like
to look at ,as your dislike of forums does hamper one slightly
site is called
ASCO Cancer Net
J
JHi, your time is up,,,, time to tell me how you are,, and did you find the
American group ?? Of course you did, and are totally engrossed, answering all their mail. Just nod your head if you are O.K
Hello you,, here goes ,,are you there??? ARE you still giving hugs ??? My squatter and I send you one each, as we are on speaking terms. I have just had a C.T scan ,first for two years, squatter is still in residence ,but comatose,,, must be the herbals and vitamins keep sending down... Please don't ignore
this "note" . HOW ARE YOU ?? A reply is compulsory .
that's the fierce one,, this is the "Bet he doesn't reply" This is the look of amazement ,,in case you do reply.
Jacqueline
Hello Mikey, just wondered if you are still breathing ..Three months is quite a long time to be ignored !!!!
Jacqueline