My mum is newly Diagnosed: My mum has... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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My mum is newly Diagnosed

Melissa12345 profile image

My mum has been newly diagnosed with Stage 4 lung cancer (adenocarcinoma) with bone mets. She had no symptoms of lung cancer and it was only picked up as she had a private CT scan as she had severe back ache. She has a tumour in her left lung, speckles of cancer in the right lung, a tumour in her vertebrae and speckles around that tumour. She saw the oncologist last week, he was positive and hasn't ruled out any treatment for her. He did say that Mum is an unusual case as she has 2 mutations, 1 is resistant to targeted therapy and the other is non resistant to targeted therapy. From next week she will be taking osimertinib. Her main concern is that she will not have a good quality of life because of her excruciating back pain, at the minute she cannot stand for more than 5 minutes. Has anyone else had stage 4 lung cancer with bone mets ? If so how did osimertinib effect the tumours? Lastly, has anyone responded well to targetted therapy with 2 mutations?

Thanks

13 Replies

Sorry I cannot address the Osimertinib as it didn’t exist when I was treated. I can share what a member of my group experienced. Her cancer was found because it had wrapped around her vertebrae. She had radiation to the back and that is what did the most to stop the pain. She also had chemo but that was 12 years ago, there were no targeted or immunotherapy agents then.

Hopefully someone who has been on it will check in soon. Osimertinib (Tagrisso) was approved for use almost 3 years ago because it increased progression free survival by a significant length of time. It also has fewer side effects than chemotherapy.

Sending hope she thrives for a very long time.

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Melissa12345 profile image
Melissa12345 in reply to Denzie

Thank you so much for the comment. That is so positive to know that she is doing well after 12 years x

I was diagnosed with stage 4 lung cancer ALK positive with bone mets 6.5 years ago and am on a targeted tablet for my treatment. It has been an up and down journey but I am still here and follow someone in America who was diagnosed 15 years ago. There is a U.K. ALK Positive Facebook group which I belong to and find my best source of support.

I know that some people who take the medication that you have mentioned are EGFR Positive. I don’t know if your mum is but you will know that. If she is EGFR Positive I would recommend joining the U.K. EGFR Facebook Group and ask the same question there.

There is also Inspire website and support page in America which has people from all over the world posting about different types of lung cancer, worth asking on their too. Probably worth knowing both of the mutations that your mum has.

Also Roy Castle helpline might be able to help.

There is an American patient information charity called GRACE which has research and information about mutations for patients too.

Also worth checking that the Doctors who your mum sees are used to dealing with mutations as some have more experience than others.

Hope all this makes sense. Wishing you and your mum all the best x

Melissa12345 profile image
Melissa12345 in reply to Bow-19

Thank you so much the comment and the useful Facebook groups.

My mum isn't sure what mutation she has but is going to ask the question. I have spoken to Roy Castle and they have been excellent but wanted to hear people's stories.

I'm glad your treatment is going well. It gives me hope when I hear people are lasting for years and years. We still have a long journey ahead though.

Keep safe x

in reply to Bow-19

Hello would you be able to send me the link on the person you follow that was diagnosed 15 years ago? I’d love to read about their story.

Bow-19 profile image
Bow-19 in reply to

Yes it’s outlivinglungcancer.com

Her name is Linnea Olson, she has also done TED talk etc, if you google her name lots of information will come up

The American Inspire website is also useful to join

Wishing you all the best supporting your Dad on this journey x

The Facebook Group is EGFR Positive UK

There is also a Worldwide EGFR Facebook Group which has a lot more members. It might be worth joining both and seeing what you think. It is called EGFR Resisters Lung Cancer Patient Group.

Also just remembered if you look on the Roy Castle Lung Cancer Foundation website they have a good booklet about targeted therapies x

I am so sorry to hear about your Mum’s diagnosis.

I too have stage 4 lung cancer with bone mets, mostly in my spine, and it was severe back pain that led to me getting diagnosed. I didn’t have the mutations for targeted therapy so can’t answer your question re osimertinib, but have had radiotherapy, chemo and am presently on immunotherapy and denosumab injections. The latter being to help protect my bones. It was the radiotherapy that helped with my back pain. In my case my spinal cord was about to go into compression, so I had 7 days’ emergency radiotherapy shortly after I was first diagnosed in February 2016 and another single blast in November 2017 when I had further disease progression.

I hope your Mum responds well to her treatment.

Sending love, best wishes and positive thoughts 💕xx

Thank you I'm sorry to hear that you have a similar diagnosis too.

Thank you so much for your comment. They are talking about giving mum a short course of radiotherapy to ease the pain and pressure. I'm glad that radiotherapy helped with your back pain.

Thank you veru much.

Thank you sending the same back to you ❤ xx

Thank you. I think you will find the radiotherapy makes a big difference. It isn’t immediate but it has certainly helped me. I was in a wheelchair, then walking with a frame, then a stick and now unaided. I still get back pain but not like it was in 2016. I would have given nothing for my chances of walking again unaided back then. xxx

Dear Melissa12345

Radiotherapy can be used to reduce pressure and ease the pain, hope this helps your Mum which will make her feel better and achieve some quality of life back.

I believe you have spoken to someone at Roy Castle, but if you need to discuss anything else as time goes on you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

Dear Melissa12345

This is our link to our booklet on radiotherapy which you may find useful:

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

Kind regards

The Roy Castle Support Team

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