Brain Mets

[BellaBe]

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

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

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 [e-mail] 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

[Bow-19]

Definitely join the ALK Positive UK Facebook Group and the Worldwide one too. I am ALK Positive and had two brain mets treated with radiotherapy SRS three years ago. Lots of other people on the ALK Page will be able to tell you their experience. It’s a very positive and supportive page with lots of information about treatments and research plus social activities too. I hope you join us x

[Cockailschemocancer]

Hi Bella - I’m not ALK positive but when j was diagnosed the MRI showed some small melts and they cyberknife them away in one go. Since then no show on the MRI and 12 month MRI due April so fingers crossed. They didn’t tell em anything abut those statistics quite the opposite. Best of luck and wishes to you. Xx

[Survivorcoachpt]

Hi BellaBe! I am ALKPOSITIVE and I had 4 brain mets at diagnosis. I had SRS (cyber knife) radiotherapy in October last year and my December brain scan was clear! Alk+ treatments are fab. Stay positive. Jen x

[simlut]

I’ve no experience but I have done a lot of research and they can treat the brain mets with Stereotactic Radiation which targets the mets or Cyberknife treatment or Whole brain radiation.I know it must be very frightening but there is treatment so stay positive.

Sending big hugs xxx

[Lifesab]

Hello BellaBe.

I can only echo what others have already said. Like them I initially had one brain met that was treated with gamma knife surgery. That met was shrunk to a negligible size and is no longer a worry. Subsequently, 2 more brain mets appeared in a different area and once again gamma knife surgery was employed successfully. It is now 3 years since my last brain treatment and I have MRI scans every 6 months, the last just 3 weeks ago and that was clear. I hope that provides you with some comfort.

Like you my lung cancer is well controlled with the taking of Ceritinib.

Stay strong and stay safe.

Best wishes

Colin.

[BellaBe in reply to Lifesab]

Thank you everyone for such positive comments and experiences. It does give me some hope that I’ll get through this.It does seem that most of you had cyber knife. My hospital does not have a cyber knife machine but offer SRS on a Linac machine. Does anyone know if this is just as effective? I know if I ask them they will say it is.

So any experience, again will be much appreciated. Thank you

[JanetteR57]

Last year the government approved and accelerated the adoption of SRS across the UK so it could be offered by many more hospitals - the majority using linac machine to improve outcomes for patients especially with lung cancer although the extension does state metastases outside the brain. I'm unsure whether your hospital is able to offer gamma knife for the brain mets or is talking about SABR/SRS on a linac for other tumour sites. As I understand it cyber knife is a brand name and although radiotherapy may be delivered slightly differently, the outcomes are almost the same. Cyberknife (SABR) is widely used in lung cancer, spinal and bone mets. Gamma knife is a brand name of equipment used for brain mets in a limited number of geographic sites across the country. Extending SABR to more hospitals is hoped to save many lives and reduce the distance needed to travel for such treatment. Some of the implementation of the revised policy has been impacted by the pandemic so worth checking which treatment they are referring to. good luck. macmillan.org.uk/cancer-inf...

[BellaBe in reply to JanetteR57]

Thanks for the information. I’m pretty sure I’m being offered SRS for 4 small brain mets and the hospital has a linac machine. They have had an SRS MDT after the brain oncology MDT decided that what was on the MRI was brain mets. I’m now waiting for a brain lab MRI and I guess we’ll go from there. My oncologist said that the outcome of the SRS MDT was that I was to receive this treatment. I do not have any other tumour sites as the disease is controlled in my lungs with no evidence of tumours. So I’m a little confused by your comment that it’s only used outside of the brain.

[JanetteR57]

Sorry - didn't mean to confuse - I was just reading the guidelines for SABR extension of the service ...england.nhs.uk/2020/06/conv...

[hedgehoggy]

Hi i had NSLC stage 2 in 2012. removal of small left lobe. In 2015 Mets to the brain and removal by operation and 2018 another tumour using Stereotactic. I have collected 4 masks to date and running out of space. See my notes under Hoggy. But since all my treatments am doing very well.I wish you well. They can do marvels with the brain.

Best wishes

Hoggy

[Mariah65]

Hi. Please can someone tell me what ALK is. Thankyou

[BellaBe in reply to Mariah65]

ALK+ is a gene mutation that has an abnormal growth protein and is only in approximately 5% of all lung cancers. The one good thing is that it is treatable with a targeted therapy which gives us extra time and a better quality of life. ( except the side effects!) hope that explains it for you.

[Mariah65 in reply to BellaBe]

Thankyou and yes you've explained it perfectly. I kept reading about it but wasn't sure what it meant so thankyou again.