Crizotinib after WBR in treating brain metastases - 1257094

lclondon
Posts:6

Would really appreciate any opinions on this:

Mum diagnosed with stage 4 NSCLC (adenocarcinoma) and liver and bone mets Jan 2012. Pemetrexed and cisplatin (apologies if spelled wrong) didn't work but ALK discovered and so put on the crizotinib, with zometa for bones. Has stabilised lung liver and bones (although 1 new rib lesion which we've just found out about) and she was almost back to normal life. However, she had a recent CT which discovered multiple brain lesions on both sides. The team said that it has been found that crizotinib can work well below the neck yet be prevented by the 'blood barrier' from reaching the brain.

She is currently completing a 5 day course of whole brain radiotherapy. She was told to stop crizotinib the day before and resume the day after. They hope that after radiotherapy crizotinib will work more effectively.

I understand that the 'book is still being written' on all this but I do have these questions:

1. If crizotinib seems less effective in preventing brain mets why are regular scans not done as a precaution? Mum's previous head CT (they did not scan in January when they looked at other sites) was August last year.
2. Is there any information to support the idea that crizotinib will pass through the blood brain barrier more effectively after radiation?
3. Does anyone out there have a similar experience with this (crizotinib after WBR) who could give me an idea what to expect?

Thank you
LC

Forums

lclondon
Posts: 6

Dr West thank you for your prompt response, greatly appreciated. If I can trouble you with one more question, would you say 5 days wbr is standard length for wbr? understand is case by case but hosp say they would only give for 5 days but that seems to contradict some people's experiences on here who have had wbr for longer period of time.

lclondon
Posts: 6

I understand, thank you so much for your time and advice. I do have a lot of trust in her team and obviously they are going to know what's best but I would never forgive myself if I realised later that I hadn't been aggressive about things when I needed to be. It has been a terrifying week (brain mets only discovered last week and radio already underway, which is of course fantastic but not given us much time to process it all) as she is so scared about cognitive decline, and I am very worried about what to expect, she already has profound tiredness, is moving slower than usual and thinking and responding seem to take more time.

catdander
Posts:

Hello, I want to say how sorry I am that your mom and you are in this terrible position.
Her symptoms may be from the brain mets, side effects, or just the normal wear and tear from the stress.
Below is an example of threads in the radiation forum on brain mets. certain spring is gracious with sharing her personal experiences and side effects of brain radiation is one of them. BTW, she too is in England.
http://cancergrace.org/lung/topic/side-effects-of-wbr/