Gist tumours

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you are living with a dormant GIST Tumour.... I did have to googlr this.

I am Mike Thehighlander and I help out on the Community and I will do my best to direct you to the best place for you to find the support and help you need. On my long journey I found the best way to navigate the various challenges that a cancer diagnosis brings was by talking with people who are on the same journey.

My cancer journey was rather different but I see that you have joined the Stomach Cancer Forum, this would be a good place to post as you will be able to connect with people who understand the journey you are on.

Just go to the the group and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

We also have pour ‘Ask an Expert’ section but please allow a few days to get an reply.

When you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you. 

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page. 

All the best. 

Thank you for replying ,,(seems like it's Your job). I appear to be in a majority of ONE... So there won't be much use in becoming involved.No one else will have been down the Gist road. AH  ,!!!! It's a lonely life . 

Hi and a second welcome to the online community

I don't think you are the only one with a Gist tumour. I have just typed 'gist' into the search facility in the stomach cancer group that Mike mentioned and several previous posts have come up. Why don't you pop along and introduce yourself.

x

Yes , please do what my friend latchbrook is saying as a very high percentage of the folks on this very large Community will not look at the New to Community page as folks like latchbrook and myself do our best to direct everyone to the best place to meet up with people on the same path.

A great shout about the search tool.

((hugs))

It seams you are not only one who is travelling the GIST road as myself I had mine diagnosed ans successfully removed last year. Now I am going through the Chemotherapy in the hope it does not return.

My surgeon said that I was forth such operation to remove a GIST she has had in her 20+ year career so I gather they are not that common.

I did like her comment when they found it after my first CT scan as she called it an oddity.

I think I prefer the class of Rarity ,to Oddity.  I was told that Gist's did not respond to Chemo,just removal or drugs . 

Hi and a warm welcome to the online community

I'm sorry to see from your reply to lilac lover that you're also dealing with a GIST, so could I recommend that you join the stomach cancer group where you can share experiences and get support from others with this type of cancer.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then post a question or introduce yourself after selecting 'start a discussion' and respond to existing posts by clicking on 'reply'. 

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

The drug I am taking is marked as Oral Chemotherapy and it is designed to either shrink or stop the tumour returning. I have to be on this drug for around 3 years with all possible side effects could have which luckily I only suffer the less debilitating ones.

I myself I prefer Oddity as it suits me and my own oddities. :)