Hi everyone. I am 64 and was diagnosed with GIST cancer in 2022. I have a large inoperable tumour which is growing around my stomach and two lesions on my peritoneum which is metastasis from the primary tumour.
I took Imatinib for about two years with a scan every three months (I am resident in Spain and receiving my treatment here, although I don't feel this is especially relevant). The secondary lesions grew and I went on to Sunitinib for a few months. The side effects were unpleasant - hand and foot syndrome and highly sensitive mouth which made eating difficult. On my latest scan the main tumour had grown.
So fast forward to this week. I am now on regorafenib which I take for three weeks and then I have a week's break. This first week without medication has been such a tough week. Feeling and sometimes being sick; a heaviness in my stomach and a tiredness (partly from lack of food I guess). Has anyone else experienced this in their "week off"? Any advice?
I have an appointment with the oncologist on Friday, and would welcome any thought to take to the meeting.
Sendin you all warmest wishes.
Mary
Hi Mary/Mary Lou and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
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.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
