Regorafenib

Hi Amanda24 I can’t recollect anyone recently having it on here but if you type it into the search box at the top of the page then it will bring up previous posts from other boards too which you can look at? I’ve attached the info links from Macmillan and cancer research too

https://www.cancerresearchuk.org/about-cancer/treatment/drugs/regorafenib

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/regorafenib

Hope you find you can tolerate it ok?

Take care

Karen x

Hi Amanda24 

I have heard of it before . I have had a look and see it’s a targeted drug . Very similar side effects to my mum’s targeted drug which she has just come off after ten months .

Have a chat with your oncologist and see which side effects they see most . That is what my mum’s oncologist did and it was helpful to prepare for the more common ones and have the reassurance that some they rarely ever see .

The list gave us a jolt too but in reality she would come away from her infusion with antibiotics to prevent the skin issues and a pile of creams to use instead of soaps . Steroid creams to prevent rashes etc . She also took a sachet to help her electrolytes. Having done two years of chemo the targeted drug in our eyes actually gave her better quality of  life but is a whole new learning curve . Being a different drug you will have different approaches but they are well prepared to manage the side effects. 

The mouth ulcers aspect , the hospital mouth wash was rubbish but her Gp gave her one and they cleared up in days .

Not sure if it will be the same for you but the side effects unlike chemo were not so cumulative. They actually reversed at times and new ones popped up to keep you on the toes .

In terms of success she had initial shrinkage than stability and it was largely that way until last month when a mm growth in 2/3 mm tumours was classed as progression . But I do think it was more to do with her age and vulnerability. 

Hope that  helps give a bit of info . All in all she had a good quality of life unlike when she was on chemo .

When I read the sudden death side effect I had to put the leaflet away and hold on to the fact it must be so rare the benefits well outweigh the incidence of this occurring or it would never be allowed to be licensed.

It was enough to make you fall off your seat !

take care ,

Court 

That’s really helpful. Thank you.

Thank you ️