GIST Stomach Tumour.

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Hello,  Well this is the last place I expected to be - as I am sure so many have.      Male, 82+ years old, fit, active.  In January, out of the blue I had a major bleed - both ends and my life was saved by the brilliant actions of Hospital staff.       After ICU ,&   Blood transfusions and later an 'Umbrella' filter to catch any Blood Clots reach the Heart I was diagnosed with a Stromal GIST. now outside Stomach Wall,     Stage 4 and in nearby Nodes,  And that is it.    I feel fine, normal, yes more tired than usual and have had 2 Iron Infusions recently.    Treatment Palliative as this is inoperablte. 1 X 400gm daily of Iminitib,  and I have just started my 4th week.   So far no side effects,  thankfully.   My wife has taken on a much greater load looking after everything as I have recovered - but she is stressed'.  MacMillan are being so helpful and kind.   Where is this going?

  • I am so sorry to hear about your diagnosis. It must be such a shock for you and your family.  Hold on to the positive that there’s a treatment plan and that you feel well.   There are many people on this Forum who have had incurable but treatable diagnosis who are on treatment for years.  
    Having had cancer my approach is to find happiness every day!

    Good luck!

    Jac

    Life is what happens when you are making other plans!  
     
     
  • It was so nice to have your message..just what I needed to give me the lift today,  even though we have lovely sunshine over beautiful valleys.  Best wishes and thank you.

  • Hi, I’m so sorry to hear of your diagnosis… you’ve come to the right place for a chat or ask questions. I would also recommend popping into a cancer support centre if you have any near you for example Maggies centre etc… the volunteers are amazing in there… 

    Please keep in touch… take care. 
    Michele 

  • It amazes me just how much help there is...not until it hits you that you take notice of the MacMillan  Ads on TV.  Bloods taken this morning and a Review tomorrow - it is early stages of a Target drug but I am hoping for positive news.  Thank you for your support. 

  • Hi there Bowling Stone and welcome to this group that we didn’t want to join, but having done so there is a lot of help around Jac been one of them. Well I’m sorry I don’t know what GIST stomach cancer is, I presume it may be like stomach cancer?  and I sure know a bit about that, my 80 year old husband had a total Gastrectomy on the 11th Jan, he’s doing absolutely fine at the moment. I can sympathise with your wife as it’s me doing the worrying, we don’t have a cancer centre anywhere near us and I don’t like asking the GI nurse so I just worry. I’m not much help to you I’m afraid, I’m just sending hugs to you both xx

    Sue Xx
  • Sue, you don't realize just how much you have helped - a kind word and a hug is all I want! Tomorrow I will find out if there is any improvement, whether or not I can get back to driving and sport.  xxxx

  • I now know what GIST is after googling. I really hope you get good results tomorrow so you can get back to driving, also keen to know what sport it is you want to do? My  husband 80 thinks he can run a marathon but would be lucky if he could run to the end of the road haha. Good luck for tomorrow and do come back and let us know x

    Sue Xx
  • Sue

    I have just read your post and I think this article might help

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    I read it when I get anxious.  I also follow the advice of a wonderful contributor to this Forum.. the Highlander. He talks about the backpack that you get with a cancer diagnosis and it applies to all those affected by cancer!  The backpack weighs you down at times, so you have to unpack it from time to time!  We can’t control what is going to happen tomorrow but we can try to live more in the present!  Not always easy! 
    Hope your husband continues his recovery and you have a lovely Easter. Xx

    Jac

    Life is what happens when you are making other plans!  
     
     
  • Great to hear that your Husband is doing so well.   Unfortunately  the Gist cannot be removed.  Sport is Bowls an avid player and hopes to play in 4 weeks!   This evening a call to attend Hospital to collect tablets as his Potassium was too low - we are there tomorrow but it couldnt wait a round trip of 30 miles...not too bad.  I will look out for the Highlander. Likewise have a nice Easter xx

  • Thanks Jac for the info, I’ll have a read this evening. Yes Thehighlander was a great help to me regarding my husband’s Lymphoma he really put my mind at rest along with you and Red10 for the stomach cancer. It’s nice to know people are around when needed. A big thanks to you all xxx

    Sue Xx