Hi everyone,
First time I have discussed this stuff somewhere like here but need some guidance....
My mum has advanced malanoma... its been metastatic for the last 3 years including bones, lungs, breast, brian and so on.. blah blah. She is under an amazing prof at southampton, Christian Ottensmier who is leading in new medicine so that has been a benefit in someways.
Last year in October she had femour and knee bones removed in oxford and at the same time was tested for the BRAF mutation which was positive and we managed to get on her the trial (brim 3 i think roche call it) However at the beginning of sept we found she had a brain tumour- told that the body treats the brian as a seperate entity so trial drug prob not getting there. Was removed by surgery.
This week when she had her usual roche testing they found another brian tumour as well as 1 Breast and 1 chest so they are taking her off the trial.
She will be going to the cromwell in london for radiostatic surgery which all seems quite straightforward- better than the brian surgery almost!
Christian how now recommended that she try the Ipilimumab so see if that helps...
Has anyone had it? What were your side affects like? Im worried because she is already extremely tired from all the major surgery and treatment in last couple of years and shes not had a break to recover yet before it all starts again and shes also getting tired of the fight.
The other thing is the funding, we have been told we would have to apply for funding/grant for it as i believe NICE has just licenced it so no more trials available. How have you got on getting funding? Postcode PCT lottery here we come im guessing..?
I will really look forwrad to any story/experinces you can share with me
Charlotte
