Stage 4 NSCLC with metatasis to brain - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Stage 4 NSCLC with metatasis to brain

Chipmonk23
Chipmonk23
22 Replies

Hi

Someone really close to me has been diagnosed in April with lung cancer that had spread to the brain. We are in complete shock.

As this is stage 4 it’s non treatable but they suggest radiotherapy to the whole brain And then immunotherapy to the lung. We have been told they have limited time.

With the side effects of radiotherapy do these outweigh the extra time it offers? What is the prognosis as I can’t see it’s very good

Any advice would be appreciated as we are going out of our minds

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RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Chipmonk23

So very sorry to hear about your news and can appreciate how this must be a great shock to everyone involved.

This link will take you to our booklet on 'Understanding Brain Metastases and Lung Cancer' roycastle.org/system/file_u...

This provides a lot of useful information from diagnosis and what to expect with treatment (page 18 has the section on Radiotherapy)

No one can give an exact time and everyone is different in both side effects and response to any kind of intervention.

It can help in discussing it fully with both their families and the professionals involved. For some people, having a quality of life with what time they have left is for them and for others, they wish to try everything that is available.

Immunotherapy can sometimes be well tolerated and may provide more time, this link provides some information on this:

roycastle.org/system/file_u...

They may wish to consider a clinical trial and can ask either the lung cancer nurse specialist or Oncologist if one is available. This link from Cancer Research UK has an open trial for Lung Cancer that has spread to the Brain, interestingly enough it is with Radiotherapy and Immunotherapy:

cancerresearchuk.org/about-...

If anyone wishes to discuss anything they can call us on our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

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Chipmonk23

Thank you - I think the worst thing is not knowing what the average prognosis is

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RoyCastleHelpline
RoyCastleHelplineAdministrator
in reply to Chipmonk23

Dear Chipmonk23

It is a very common question and the health professionals, as you know, can only give an approximate timeline, and even that can be wrong. Sorry we are not able to answer that question and all anyone can do is to make good use of the time each day that is given to us.

Thinking of you all.

The Roy Castle Support Team

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Denzie
Denzie
in reply to Chipmonk23

The new immunotherapy treatments have rendered the data currently used to give a prognosis invalid. They have only been approved a couple years and don’t have the decades of data collection behind them. They were fast track approved because of their overwhelming success early in their trials.

On a personal level, one of my advocate mentors survived 18 years after his initial diagnosis of lung cancer due to his brain mets. 2 years after the initial treatment they progressed and he had them treated again. This month I lost a long time friend 7 month after his diagnosis. There is no way to predict who will do well and who won’t.

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Chipmonk23
Chipmonk23
in reply to Denzie

Thank you. So sorry to hear of your loss.

It’s the shock of it all I think and being told that they have months not years

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Denzie
Denzie
in reply to Chipmonk23

It’s a good idea to take care of certain details- here in the US we call them Living Wills, Advanced Directives, and Durable Powers of Attorney. No one is promised a tomorrow. No one. Your friend may yet outlive you.

Don’t be in a hurry to bury your friend before he/she is dead. Remember the lesson of my mentor! He had brain mets 2x and still lived very well for 18 years. I myself, was given 10-15 months to live. That was 103 months ago (8.5 years).

Be there when your friend wants to express their fear or mourn the loss of opportunities now denied. Allow them to rail against their new normal. Life changes radically but it doesn’t have to be all bad. I find there have been some wonderful changes and amazing people in my life that were not there before cancer.

Help your friend live their best possible life whether there are 10 months or 20 years.

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Fattyboy

Hi,

My wife’s cancer has not spread to her brain and she is just taking alectinib tablets, so sorry, but I couldn’t comment on your questions I am afraid. Sorry to hear your news and I wish you good luck and all the best with the treatment. sorry I cannot be any more helpful.

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Chipmonk23
Chipmonk23
in reply to Fattyboy

So sorry to hear about your wife. Thank you - fingers crossed that both your wife and my loved one respond well to treatments x

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Bow-19
Bow-19
in reply to Fattyboy

Just wondered if your wife is ALK Positive and if she is if you have joined the UK and Worldwide ALK groups too? X

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448690

Hi Chipmonk23. I was diagnosed with stage 4 inoperable lung cancer in Marc 2107. I was put on Cistplatin and Pemetrexed. After 4 treatments i was put on Pemetrexed maintenance which I have been on close to 2 years without much side effects. Everything going along fine until about 6 weeks ago when I got a call from my oncologist after an MRI where they found a small (around 1.4cm Brain met. Biggest shock ever. They scheduled me for SBRT radiation treatment. I went in for 5 days which all went very well. The thing that concerns me most as while I was having radiation, oh before that I ended up in the hospital for 2 weeks with Shingles.... this was another, are you kidding me moments ... how much do you want to throw at me at the one time........can you hand me anymore to deal with... worse pain I’ve ever had in my life. Anyway got through that with lots of pain drugs, but while all that was going on my Chemo was cancelled, so as of today I’ve missed 5 Chemos, not knowing if my mug cancer has progressed or not. Right now I feel great, feeling like I don’t even have cancer but I think that’s because my body is having such a break from the chemo. I’m terrified the lung cancer has progressed but there is good things said about breaks in Pemetrexed, so wish me luck it hasn’t. I’m meeting my oncologist on Tuesday hopefully start my chemo on Friday. As far as the brain met goes, SBRT is the way to go. They only targeted my one met because there was no need to do the whole brain. How many Mets does your friend have? and does he know the size. I don’t put to much into ... limited time. With the treatment available now I would look into the future. I have discussed briefly (with lots more question for her at my meeting on Tuesday) but we have discussed staying on Pemetrexed or going right to immunotherapy, which what I’ve read through all the sites I’m on is a wonder drug... but then again it’s different to everyone and remember everyone and the side effects on any of the drugs is different for everyone. Tell your friend to go on as many chat groups like castle, mayo clinic and the American and Canadian cancer clinics chat sites. They all have great sites with caring people that are going through the same thing. Get as much information as possible as each and everyone of us deal with these treatment differently. Sorry if this response is so long, just trying to give you as much information on my story as I can and as much as this was definitely a huge shock for me also. Last word to your friend.. Stay strong and reach out. It took me awhile to go on these chat. Lines but I’m beginning to realize it’s helping me a lot.

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Chipmonk23
Chipmonk23
in reply to 448690

Thank you for taking the time to post. I hope that your treatment continues to work and that you stay well x

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KandB

My husband who is only 57 years old had the same diagnosis last September since then he has had radiotherapy to the brain with no ill affects and had immunotherapy 4 times in January this year he has just started another round of immunotherapy this month. It is so hard when you first hear the diagnosis but you must be positive there’s lots of new treatments out there which are helping lung cancer patients survive for longer nowadays.

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Colin57

Hi there I can give no knowledgeable advice, but I do send my very best wishes.

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JanetteR57

Sorry to read your news and appreciate your fears. Yesterday I was at a training course with some of the top UK names advising on lung cancer treatments, developments and outcomes including types of radiotherapy. The most recent treatments do not yet have sufficient data behind them to reveal the exact numbers living longer (overall survival) as many are still alive - but it looks positive to those who respond to immunotherapy and targeted therapies (if they have the specific target for the agents to work with). However not everyone responds well and not everyone is eligible biologically. Whilst it's good to use international online groups (as I do), healthcare systems are quite different and the scientific evidence is pooled globally at the international conferences (such as ESMO, ASCO and World Lung). This means when treatments are scientifically proven and evidenced to show meaningful difference, the different health regimes around the world look at the evidence and affordability to introduce them into their standard cares. This was the case with Durvulamab I heard about at a conference ESMO in 2017 and is now offered in the UK. Clinical trials are increasing offering new treatments. Far more is being spent on lung cancer research than ever. The issues surrounding cranial radiotherapy (whole or targeted) with or without immunotherapy are being studied. Studies take time to prove the theory - just because a few patients respond positively, numbers have to be replicated in larger populations before introduction. Don't give up. Sadly lost 2 friends with brain mets - one a sudden emergency diagnosis in 2011 with widespread mets to spine, brain and liver, sadly didn't make it. The other was a fellow lung cancer patient advocate diagnosed almost 6 years ago (never smoker) in his early 40s. He had targeted therapies and each time something stopped working, another came along in clinical trial or standard of care setting. He developed brain mets Xmas 2017 and lost his battle of almost 5 years last year. This patient advocate gained several years over his 'suggested' time. I've met others who had SABR to brain mets. I don't think clinicians know who will respond or not so this business of accepting the 'timelines' is unreliable in my experience. It's important to talk to his clinicians about the specifics of his biology/general health and any other conditions - when you have the facts, you can look out the relevant info about treatments - from your team. There is so much variety (scientists call it 'heterogeneity) in lung cancer, that what works for one person or even a few (ALK+ patients are a small number as an example) not only may not work for others but targeted agents are very specific and not only might not work but accelerate tumour progression in others. That's the reason for so many tests and why tests (pathology especially) take a long while due to the science determining the best treatment available. Good luck. Thinking of you.

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juliepoolie01

Hey chipmunk, read my original posts, mum has stage 4 lung with spread to lining of the brain, 2.5 years in and still going strong!!! Take the fight to it and do all you can to kick its arse. There are no guarantees! Many people way surpass the expectations. Don’t give up hope. Good luck xxx

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Manninmaid

Hello Chipmonk23. Very sorry to hear this news. I don’t have brain mets but do have lung cancer with bone mets. My prognosis was 9 months back in Feb 2016. So as others have said it is difficult to give a timescale and they are often wrong. I don’t think it does to take too much notice of such timescales anyway. I have known people who have been given a timescale, became fixated on it and seemed to just give up, whereas if they hadn’t been I often wonder would they have lived longer. Also as others have indicated there are new treatments coming along all the time. I have been on immunotherapy since December 2017 and my disease is presently stable. Other than ongoing fatigue and extensive eczema when I first started on immunotherapy I haven’t had any significant side effects. I have had radiotherapy but to my spine rather than brain. I do however have a friend who has had radiotherapy to her brain and is doing very well. In fact she has recently been abroad on holiday. My treatment, which has also included chemo, has all been classed as palliative rather than curative, with the intention of course being to extend life still with some quality. Keeping positive and being surrounded by positive people helps. Also having help with those things you can no longer do. Life is certainly different and there is frustration over what you can no longer do, but there are positives too. I spend a lot more time with family and friends than I was able to before, have also met some lovely new people and have some new interests.

Sending you and the person close to you very best wishes and positivity. 🌼

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Chipmonk23

Wow it sounds so positive for you. I hope that you continue to feel well.

As my friend said - he’s living with cancer not dying from it!

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Chipmonk23

Thank you to everyone that has taken the time to post, you have all given me a completely different outlook. Ignore the timeline and fight !

Treatment starts on weds so let’s kick the butt of this blooming disease

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Elt79

Hi

I was diagnosed last October with Stage IV NSCLC with Mets to brain and adrenal gland. Complete shock to me and my two daughters. I have been told not curative but have never even asked time line. I had steriotatic radiosurgery for brain last November (very lucky they could target tumours) result of that after 2 MRIs tumour shrinking and one gone. I am on immunotherapy for lung and after 4 treatments have seen reduction in lung tumour and stable adrenal. In April my daughter ran her first marathon for MacMillan and I managed to walk 10 miles!! I am 65 yes with only a third of a lung where the cancer is. Don't lose hope as a positive attitude really does help and don't give up!!! I really do know how hard it is but 7 months on I am treasuring every day and coping well - there are tough days but as my daughters and I say to each other 'you can visit your sad place but not allowed to unpack there'!!! Best of luck to you both and keep fighting!

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Chipmonk23
Chipmonk23
in reply to Elt79

Thank you so much. I’m glad to hear that the treatment is having a positive effect on you,

Dad has his radiotherapy to the brain - last one today but he’s been so sick,

We have oncology on thurs where I think immunotherapy and chemo were on the agenda. It’s so hard as everyone we see tells us dads time is limited but what does that even mean

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Elt79

I too had sickness etc after radiosurgery and felt terrible for weeks after but it does pass. I am only on immunotherapy as that was first line at the time but believe the combination is now approved. No one has given me a time frame and I honestly haven't asked but determined to fight for as long as I am able. I had to surrender my driving licence due to brain but my goal is to reapply after 12 months as miss independence - although did get bus pass😊. These first few months will be the hardest but keep positive! The new treatments are changing the outcomes and giving us hope. Take care.

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Chipmonk23
Chipmonk23
in reply to Elt79

You are a real inspiration - I’m going to encourage dad all the way. This isn’t going to beat us yet

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