Advice for someone that partner has stage 4 gist

So my husband has gist in stomach liver and lung. I'm not stupid with understanding that any form Of cancer can all of a sudden change for the worse or get better to a degree. But what is the time frame for gist as we have never really been told much about it really and when read about it you read short life span is this true or can it all change. 

  • Dear Belle863,

    So sorry to hear about your husband’s diagnosis of stage 4 GIST.

    My brother was diagnosed of stage 4 GIST in the stomach in March 2018. An operation was ruled out as it was metastasised in the liver, and was incurable, thus terminal. Prognosis given was 12 to 14 months. He was given targeted drugs, starting with Imanitinib which worked really well.His tumour shrunk and was feeling very well to a point he was thinking of going back to work. However, the drugs stopped working after a year. He took part in a clinical trial for second line of treatment with Sunitinib but he never managed a take a full dose as the side effects were severe, and also it’s impact on reducing the tumour waned therefore he was given third line of drugs -Ragronefinib. Again, the side effects were intolerable. Just before he was going to be given new trial drugs in September 2020, his condition worsened and eventually he passed away in November 2020.

    At at this stage, it all depends how the patient responds to targeted drugs. Some people are lucky to respond very well to these drugs.  

    I wish you all the strength having to go through this horrible time, and hoping that your husband will be given all the treatments that’s available and that he’ll be looked after well by the medical team.