GIST

Hi Tracyann 

I'm sorry to read that you're in a lot of pain. Have you mentioned this to your hospital team so that they can prescribe something if necessary?

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list and hopefully someone from the forum will be along shortly.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.

I hope you're able to get on top of the pain soon.

Thank you GIST is very rare so unlikely to find similar hence no response.  Thats fine am doing reading about it as its all new to me. Thanks again   

Hi , I hope you're doing well and hope you don't mind me replying to your thread.

I'm currently under investigation due to a finding on a CT scan that they believe is a small GIST (approx 2cm) within a Diverticulum pocket in my Gastric fundus. 

I'm very aware that this is very small and i can't find much information on what happens. 

Only symptoms I've had is bloating and feeling full all the time. 

I initially had tests for fatigue and feeling constantly drained.

I work full time and so somedays its a struggle.

I wonder if you would mind sharing with me on how you got your diagnosis if you didn't have a biopsy .

I'm going in hospital for endoscopy under ultrasound in 2 weeks and I'm feeling unsure of what will happen.  

Thankyou for taking the time to read and hope to hear from you soon 

Hello, my mum was diagnosed with Gist following an endoscopy and then biopsy as part of that. She was very fatigued as the tumour was bleeding leading to anaemia. Treatment involved imatinib and then surgery once the bleeding stopped and the tumour had shrunk somewhat. 

Hi both I was diagnosed with gist in 2015 it was found coincidentally when I was diagnosed with bowel cancer.I had a 14cm mass in my abdomen and removed at the same time as my rectum cancer.Im on a drug called imanabib but double the dose because it started growing again.Try stay positive is hard I feel once I know the plan its a little easier to deal with.