GIST

• I've been living with gist since 2015 which was found due to me having bowel cancer my bowel cancer was early but my gist was 15cm in my abdomen.Ive been on imatinib 400mg which I had to increase to 800mg two yrs ago due to growth.Today I had the news it had grown more plus I had a new one.I think surgery out the question because of how much disease I have so in two weeks time will be starting sunitinib really hoping that kicks it but I'm also Exon 9 

It’s so good to hear from you and I wish you all the best with Sunitinib.
i have been taking this since December last year. I have had bouts of struggling with constant diarrhea and feeling very tired but it is getting better.

I was using Loperamide to help with this but was struggling with tummy ache and it was not always effective with stopping the diarrhea.
I’ve been advised to take Codeine and this seems to be better. I also eat marshmallows at bedtime. This was advised by the consultant when I first had my ileostomy.
This past few weeks I’ve felt a lot better and regaining my confidence,  as in the beginning I was scared to go out as the diarrhea was so unpredictable.

However this month my 12 week scan shows that a couple of my tumors have shrunk only by about a cm but this is very encouraging as previously Imatinib only managed to maintain them. So I will take that. 

I wish you the very very best and please let me know how you get on   

Thanks for the reply yeah I heard the side effects are alot harsher I was fine on imatinib but I can handle the side effects if it works.Do you know yr mutation at all.Im currently under Dr peak at the QE who is very good wishing u positive scan results and will let u know how I get on xxx

I’m at The Christie near Manchester and was under a Dr Leahey, who has now retired and my consultant now or Dr Lee. I also have the highest mutation level at 10.  Yes please let me know how you get on. Not that I wish this on anyone, but so nice to hear from someone in a similar situation 

wishing you all the best

 I not sure if you go to the meeting the gist support do I've never been but really should start would love to meet people who are in similar situation makes my journey a bit more positive.I trying not to think to far ahead because that scares me.Hoping the next drug helps shrink mine down 

I only know of mutation 11 and 9 and think I've seen a few 13 not seen 10.I know mine is the least favourable but I'm still here xx

I have never been to any of the GIST support meetings either. I have been following them on Instagram and I also follow a young lady too who has had a form of GIST for over 20 years.

I’m afraid I tend to bury my head in the sand really and just try to get on with it on a day to day and scan to scan basis. I know I should probably research more and look at support groups, but it seems to affect people in so many different ways even what I have read does not always apply.

When I was first diagnosed there were only 2 drugs available but I believe there are now other options available. I don’t even understand the numbers attributed to it either. I know that unfortunately as it would appear mine also is in the least favourable group.

I live in the Greater Manchester area and not sure what is available locally. I did see a group organised in Liverpool not so long ago. 

I do hope Sunitinib helps shrink your tumour/s? I will definitely be thinking of you with everything crossed

it is so lovely to hear from someone who is in the same situation as myself. Please keep in touch x

I think I'm totally opposite I do alot of research and like to read stories similar because it gives me hope.I live in Westbrom and don't really know many groups near me.Im now 51 so was only 46 when I got diagnosed.I feel a bit odd not taking my imatinib for two weeks they said it needs to be out my system before I start sutent.They had a few MDT meeting about me and two months ago they said no to surgery so I can't see them saying yes this time either.Dr peak did mention starting me on the lower dose but continuous with no breaks will let you know how I find it.I go back on the 11th of Nov unless surgery is on option I will find out Thursday xx

I’m 65 but was diagnosed when I was 59.

At the moment although I have several tumours they are all just less than 5 cm. I take Sunitinib every day. I’ve found that taking the 3 capsules before bed helps me manage the symptoms better.

I’ve been mainting my tumours since my last surgery in 2017 with Imatinib but in December last year I had developed several more hence the change to Sunitinib. My first month my tumours shrank slightly and then maintained until this month and my last scan saw a slight reduction in some of them again only very slight less than a cm.

But I will take that. I wish you all the best and if if you ever want a chat Im here.

take care of yourself xx

Thanks for thank encouraging email my largest one now is 39mm so probably the same and a new one appeared on this scan the most worrying for me is I've had one on my lung which was 2mm but now increased to 4mm he said gist is very rare in the lung but they didn't seem to concerned about it but I am.That presuming it's gist it makes me think it is because of the increase in the others. Please keep in touch would be lovely to have some one else for  support xxx

Take care. I know how hard it is when you have news of new or increase in tumours, but we are here and fighting and medication is improving and being developed all the time. Take care of yourself and I would love to keep in touch with you, because as you say it comforting to be able to talk to someone in the same or similar position.  I too am not always upbeat but if I can be of any help at all or just a sound board I’m here xx