Brain mets: Hi everyone, Since my last... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Brain mets

HopefulAnnie101 profile image

Hi everyone,

Since my last post, my dad was recovering from treatment and doing really well. He’s recently been struggling with headaches and nausea so yesterday night I took him to A&E. they’ve confirmed his cancer has returned in the lungs and progressed to the brain.

Appears there are a few mets in the brain….I’m feeling overwhelmed.

I don’t know what prognosis to expect and how this will effect his quality of life. Any advice would really help.

Thank you x

13 Replies

I know every case is different but I had 5 grape seed size brain tumours and was treated with one Cyberknife which zapped them all. They took over a year to disappear but I’ve thankfully been clear for nearly 3 years now. There is hope.

That’s really good to hear. How many treatments did you have? Do you mind me asking whether you had any side effects too? Praying you stay clear!

Hi. I had one 90 minute treatment and had no side effects whatsoever. No pain or anything from treatment. It is uncomfortable in that you have a net mask fitted and you have to stay absolutely still for 90 mins. I thought it was incredible. But I must stress that everyone is different. My mets were caught really early and I didn’t have any idea they were there. From my point of view there is nothing to fear. The Cyberknife machine was like a big food mixer that just moved quietly around me whilst I laid still and listened to music.

Thanks for the info. Really helped. So they said my dad has an ALK mutation and are putting on some medication for 2 years. Apparently it’s more effective for this type of mutation. I’ve got everything crossed…

Best of luck, I know it's worrying but hopefully bit by bit things will get better.

Tike3 profile image
Tike3 in reply to Vapcq

Your post has given me hope thank you. I have Stage 4 NSCLC diagnosed last July. Brain scan done December showed two very small lesions which they zapped. Don't know whether it was cyber knife. Just had repeat scan and they have gone but another one had appeared on the opposite side. Thank for sharing. I hope I have some time left.

Hi I’ve had brain mets from outset (2018) and treated with Steriotatic Radiosurgery - dependant on size this may be option for your dad too. Take care and best of luck for your dad x

Thank you for your reply. I’ll ask the oncologist about this option too. Thank you x

Dear HopefulAnnie101

So sorry to hear about your Dad, and it is understandable the anxiety and worry about what happens next.

This link will take you to our booklet on brain metastases, this also provides details on the types of treatments that may be offered. Sometimes having that bit more information can reduce the anxiety about the next treatment stage: roycastle.org/app/uploads/2...

As you can see from the replies, some people have a good response to treatment, and lung cancer treatments continue to improve.

This link provides details of our support services, from one to one support to online group support through zoom: roycastle.org/help-and-supp... alternatively, you can email our support coordinator jessica.crowe@roycastle.org to discuss any support needs.

We offer a one off grant of up to £150 for anyone with lung cancer, and you can make this application through this link: roycastle.org/patient-grant...

If you would like to discuss anything you can either email ask the nurse 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

Take good care of yourself and hope your dads symptoms improve.

Kind regards

The Roy Castle Support Team

Thank you. That really helped. They said my dad has an ALK mutation. Instead they are giving him tablets to take at home. Js this common?

Dear HopefulAnnie101

There is a really good website dedicated in providing support and information for those with ALK positive mutation: alkpositive.org.uk/

They have two private face book pages: alkpositive.org.uk/help-and...

and

They have a patient forum: alkpositive.org.uk/patient-...

Targeted therapy can be used in those who have the ALK positive mutation and they come in tablets, which is very convenient for treatment and reduces hospital visits.

Take good care of yourself also.

The Roy Castle Support Team

My partner has been taking tablets for his brain mets for 3 cycles now out of 6 in all and is doing very well, this has stemmed from his original lung cancer, so keep being positive

Thank you for your response. I hope your partner continues to do well. My dad will start his meds next week. He’s currently on steroids to help manage the swelling in his brain x

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