Stage 4 metastasis : Hi, Hope everyone... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Stage 4 metastasis

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Hi,

Hope everyone is still kicking cancer butt. I was on on last week talking about my mums diagnosis . She has stage 4 adenocarcinoma with mets on her spine , iliac and adrenal glands . They have started radiotherapy on her spine to stop some of the pain and pressure on her spinal cord. (Pleased they have started ) i know its all a waiting game and feel like time stands still For everyone who is going through this . I have being doing research and just wonder if people live past a year? Also i have got a bit confused reading things regards target therapy? Do you have to certain mutations to have target therapy like immunotherapy ? Or does this not apply ? Hope everyone is as well as can be and keep fighting

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9 Replies
Mistyglo profile image
Mistyglo

Hi Steve , my mum is two years in from diagnosis of lung cancer spread to spine and had 6 months of keytruda immunotherapy which didn’t prove successful but mums cancer contains the protein which enables her to have trial medicines which is usually a cross between cancer drugs and immunotherapy so we are keeping our fingers crossed there is something out there for her but with regards to everything we are under belief that her cancer has not spread anymore or become more aggressive ! Good luck with your mum as I know these times are just so sad and scary x any more questions please ask x

simlut profile image
simlut

Hi Steve, I’m glad your mom has started the radiotherapy. Hopefully it will relieve some of her pain.You have to have certain mutations to have targeted therapy. If you look at the Roy Castle website there is lots of information including about it.

My dad is having immunotherapy even though his PDL1 was less than 1%. He had 4 cycles of chemotherapy Carboplatin and Paclitaxel with immunotherapy Pembrolizumab (Keytruda) as the Oncologist said with Chemotherapy the immunotherapy has proven in some cases to give an extra 20% chance if surviving a year.

Will your mom be having more treatment?

Sending your mom prayers xxx

in reply tosimlut

Hi, mistyglo and simlut

Thanks for the response ,my mum had a ct scan again yesterday and consultant wants to see us again in 2 weeks to discuss what the plan of action will be. Just have my fingers crossed that my my has the proteins or mutations to be put on a course of target therapy or immuneophepy to prolong her life . Can i ask what is pdl??

Sending love to you and your parents

Keep fighting

simlut profile image
simlut in reply to

PDL1 is a protein that acts as a kind of “brake” to keep the body's immune responses under control. PDL1 may be found on some normal cells and in higher-than-normal amounts on some types of cancer cells.

If you have a high PDL1 they can start you on immunotherapy on its own.

Fingers crossed your mom can continue treatment to fight the cancer xxx

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Steve153929

It is good your Mum has started radiotherapy and hope she keeps well with this.

For both Immunotherapy and Targeted therapies, they are dependent on certain cell mutations/proteins being present, and both work slightly different. In summary, the Immunotherapy helps the immune system recognise the cancer cells and destroy them and targeted therapies target the chemical within the cell to stop the cancer cell growing.

These cell mutations and proteins are detected from biopsy.

This is our booklet on targeted therapies that you may find of interest:

roycastle.org/app/uploads/2...

and this is our leaflet on Immunotherapies:

roycastle.org/app/uploads/2...

You may find this link of interest, which are personal accounts from those living with lung cancer: roycastle.org/campaigns/

If you are looking anything up on the internet, we would advise that you go to websites that are research evidence based and have accurate up to date information.

roycastle.org

cancerresearchuk.org

macmillan.org.uk

If there is anything else you would like to discuss you can either email us at lungcancerhelp@roycastle.org or you can call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Ellejayb profile image
Ellejayb

Hi Steve.

I feel for you and your mum but there is a lot of hope out there. I was diagnosed with Stage 4 NSCLC and mets on the spine in Jan 2019. I was lucky enough to respond to immunotherapy and had over 90% of the PD ‘thing’. I know other treatments have worked with other people too - there’s so much out there.

I live a normal full life and there are a fair few of us doing the same. My advice is to keep doing what you’re doing. Arm yourself with knowledge and hopefully find that chink in the door. You’re being a great son.

Ellejayb thats really good news for you ! Glad you are able to live a normal life as possible and keep up the positive vibes . Fingers crossed my mum fits the criteria to go of one kind of therapy. Does chemotherapy always work for long periods or does target and immunotherapy have better chance of prolonging life

Ellejayb profile image
Ellejayb

Hi Steve. I don’t know what has the best chance of prolonging life - I’m just a happy patient with no medical knowledge at all. But I know the outlook for all of us with lung cancer is better than it was just a few years ago - treatment seems to be much more ‘bespoke’. Don’t get too hung up on the past stats which don’t reflect today’s reality at all. Channeling positive vibes to you and your mum!

Thank you for all the replies and being supportive i hope you all the best of luck. This is been a godsend and a good support network for me as well aas other people ❤❤❤

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