Hi everyone, I just wondered if anyone had any idea if you have brain mets and you have ALK+ lung cancer is your chances of a longer survival improved?
My lung cancer is well controlled with targeted therapy, Ceritinib but they have just found 3 small tumours in my brain.
I’m really frightened as I have read that the average survival with brain mets is 6 months. I’m only 47.
Any experience with this would be much appreciated. Thanks x
Dear BellaBeSorry to hear you have some tumours in the brain which must be very disappointing for you to hear. It is good that your lung cancer has been stable with Ceritinib, which can also be used for some people with spread to the brain.
Survival rates can vary greatly and depends where the information is sourced on the internet how accurate and up to date it is. It is understandable that you would want to know this and the best person to discuss this with would be your specialist and what treatment plan is available for you to provide the best outcome.
I have placed our information booklet on Brain Metastases which you may find will answer some of your questions: roycastle.org/app/uploads/2...
I take it you are familiar with the ALK positive UK support online and they have provided some new resources including driving and brain metastases which you may be interested in: alkpositive.org.uk/resources
Hope you hear from others in the forum that can encourage and support you from their experience.
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
Kind regards
The Roy Castle Support Team