GIST TUMOUR

Posted , 2 users are following.

Does anyone have a Gist tumour?

They are rare and usually occur in the stomach wall 

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17 Replies

  • Posted

    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

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  • Posted

    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 

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    • Posted

      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    

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    • Posted

      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   cheesygrin

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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.eek 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' rolleyes

      Michael

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    • Posted

      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

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    • Posted

      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, cheesygrin  arrow    redface colour of my face at the 

      moment. I love these faces 

      Jacqueline

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    • Posted

      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

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    • Posted

      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

       

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    • Posted

      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 .mad that's the fierce one,,rolleyes this is the "Bet he doesn't reply" eekThis is the look of amazement ,,in case you do reply.

      Jacqueline

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