GIST

Hi ShazzE,and welcome to our soft tissue sarcoma group.

My wife has Leiomyosarcoma and for her she has two different types of chemotherapy - and the second one made her cancer stable and we have been living with cancer now for over six years - and showing no sign of that changing anytime soom.

Waiting for a scan is never great fun but fingers crossed for a good result.

<<hugs>>

Steve

Thank you so much Steve

Hi Sharon, I’ve just joined this site but I’m active on a number of GIST forums.  I was diagnosed with my primary GIST tumour in 2012 which was successfully removed from small intestine.  Unfortunately I  had a recurrence in Sept 2020.  I have a number of tumours and am inoperable but also on Glivec and responding well to treatment.  Got last scan results yesterday and all tumours are stable thankfully, hope your scan went well, glivec is a great drug and thankfully I personally have minimal side effects on it x 

Hi and thanks for your reply, I had my first scan results after starting Gleevec and I'm pleased to say that my tumours are reacting positively to the treatment and have started to take a more cyst ke look about them my oncologist said they now have a honeycomb consistency to them instead of a solid lump and that's what they want to see  I am struggling with the joint pain at the moment it's really painful around my hips and knees so on the advice of my Macmillan nurse I've upped my morphine to 50mg twice a day and that's helping a bit here's hoping our results keep getting better 

Shazz xx

Hello - my fiancé has been diagnosed with a GIST and started Gleevac 21 days ago. He’s noticed severe mood changes mainly anger in the last few weeks and is convinced it’s the treatment . Have you heard of this at all ? I’m really worried about his mental health. 
It’s  great to hear that your tumours are stable and that you don’t have many side effects. Sending all my best wishes X

Hi

I’m so sorry to hear how your fiancée is feeling.  I haven’t heard of this being a side effect of Gleevec.  I’ve been on this drug for a year now and prior to that from 2013 - 2016 as adjuvant therapy after the removal of my primary tumour.  I’m also on a number of gist forums and don’t recall ever hearing this.

Have you joined any of theses specific forums they are a wealth of information and very supportive.  I can send you some links if you would like.  

I hope things improve for him.

Best wishes 

Colette x 

Hi Ana, I haven't heard of this side effect either it might be a good idea to speak to his oncologist. Could it be that he's feeling angry because of his diagnosis I know I felt very angry and frustrated when I first heard my diagnosis I felt it was  the fear of the unknown just a thought I hope he feels better xx

Hi Colette, thank you so much . Yes I’d love to join other forums if you can send the links that’d be great. I showed him your and ShazzE’s reply which made him feel better in itself.  His diagnosis was only April this year so I imagine he’s still processing it all. Hope you’re feeling okay. Take care & speak soon X

Hi there - yes I agree with you on this. It’s very frightening and out of your control to a point. I’m certain the mood swings will settle down though. He’s also had waves of sadness and feeling regretful that he’s lashing out on us all but we totally understand ! I hope you are okay too  & I’m sending all my love and strength to you guys X

Thank you Ana I was diagnosed in May so its early days for me too I've had my first scan after starting Imatinib and it showed very promising results. The feeling of sadness is totally understandable I too have these days too but I'm thankful for the support of my family to get me through. Sending love and hope to you and your fiance' xx