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The Roy Castle Lung Cancer Foundation
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Targeted therapy working beyond expectations

Hi everyone.

I just wanted to share my good news today. I have had results from my CT scan which show no visible tumours in my lungs. I am currently taking Ceritinib for stage 4 ALK positive lung cancer,my first 3 month scan showed a big reduction in size and quantity of tumours. My recent 6 month scan shows I have had a complete pathological response to the drug, which makes the dodgy side effects all worth it. So it looks like I’ll be on it till it eventually stops working but hopefully that could be years down the line. It’s just so nice to get some good news for a change!

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I’m so pleased for you! Long may it last.

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Great new. Thank you for sharing. It gives us all hope. Though you also must have the ALK positive, which I don’t have, but still gives me hope, that if they can come up with a targeted therapy forALK, they can come up with my mutations.

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That is wonderful news. You must be so pleased. My mum has just started the alectinib tablets as is also alk positive so I really hope that she has the same results. Can I ask what side effects you had and when they started? We’re on day 4 of the tablets. Do you know why you had certinib not alectinib? x

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Hi,

My wife has been on alectinib since January. Side effects mainly fatigue and increased appetite. She had a scan last week and the oncologist text to say the results were good, she has an appointment this week with him. She has stage 4 NSCLC. We are so pleased with how it is all going. Best of luck to you.

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Hi fattyboy

You are the first person on here to mention weight gain on any therapy on here. I am on pembrolizumab/ immunotherapy which i also have fatigue and weight gain so its nice to hear others have the same problem thanks. Wishing your wife well.

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I too have gained weight on pembrolizumab and common side effect on fbook group I belong too. Best of luck

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Thanks for that I was begining to think I was the only one. I agree with my oncologist that the weight gain and fatigue is a small price to pay for how well this drug is working. What fbook page are you referring to. I wish you well and good luck for the future. x

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That's fantastic..enjoy..

I've just started crizotinib for??met amplification...

Good luck to us all

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So happy to hear your good news

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Thank you everyone for your kind words of support. It means a lot from others who completely understand what it’s like to go through the nightmare that is lung cancer.

In reply to you Daisy Chain I was told that Ceritinib was the most effective drug available, although I’m not entirely sure that’s strictly true. I do think a lot has to do with what your local health authority is inclined to recommend oncologists prescribe. The side effects for me are very much gastric related. I have a few hours most mornings with stomach cramps and diarrhoea, though I am slowly getting to grips with dealing with it. I have heard that Alectinib has less side effects than Ceritinib so hopefully your mum will get on ok with it. My side effects started pretty much straight away, I’ve been on my meds 6 months so I’ve been told my body should start accepting it soon! To be honest the fact that it’s working so well kind of helps mentally with dealing with feeling rough.

I hope your Mum gets on well, feel free to ask me any questions if you have any ( private message if you don’t want to post ) about being ALK positive. I’d be happy to help if I can.

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Thank you BellaBe for coming back to me x

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Congratulations, I love a bit of good news, I am so pleased for you xx

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Splendid! Celebrate!

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Well done. What great news.

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Really glad to hear your news ,you must be feeling a lot lighter and knowing you can plan life a bit is thoroughly uplifting .Side effects are sometimes worth it .

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Hello BellaBe. I am delighted to hear your brilliant news 😊. Trust you are doing something nice to celebrate. Hope the positive response you have had continues indefinitely. x

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Great news. Long may it continue. Cancer treatments have nothing to with health boards in England as it is commissioned from NHS England (not clinical commissioning boards). Health boards are in scotland, Wales and N. Ireland as far as I understand. However treatments are recommended and judged based on clinical need, biological results from Pathology and other conditions that a patient may have and the general fitness of the patient in line with NICE guidelines (recently updated to take newer treatments into account), National optimal Lung cancer pathway, society of cardiothoracic guidelines and policy changes resulting from clinical trials. Now heavily involved in lung cancer research (since 2014), and a member of various clinical trial committees/boards lucky enough to attend conferences, I see the massive inroads being made in lung cancer treatment as well as new agents, treatments in different combinations/order being tried all the time to beat this and improve patient outcomes. Here's to many more people having similar results to you. good luck.

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Dear BellaBe

That is great news and thank you for sharing your encouraging update.

All the very best

The Roy Castle Support Team

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Great news. Do you know about the ALK Positive support groups?

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Great news🥰

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