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The Roy Castle Lung Cancer Foundation
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Share my boat?

Hi,

I’m looking for people in a similar position to me who might want to connect and support each other. I have non-small cell adenocarcinoma, quite a rare type. My cancer is currently responding well to a targeted biological therapy taken daily as a pill, lots of side effects but so fortunate not to be on chemo (yet). Prognosis 1-4 years. I’m 44 with three young children.

Please get in touch if you’d like to connect.

Thank you!

Clare x

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Hi Clare, it’s rubbish isn’t it! I’m in a similar situation as you, I was diagnosed 2 years ago, had surgery and chemo but unfortunately the dreaded big C returned. Stage 4 multiple tumours in both lungs. I’m also on targeted therapy for ALK positive gene mutation, what type do you have? I have just found out mine is working well and the tumours are shrinking. It’s really hard when you’ve got kids isn’t it to try and stay positive. Good luck with everything x

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Thanks for connecting! So sorry to hear it came back after the initial treatment. But good news that the targeted therapy is working well. Mine is too for now. I’m told I have a mutation in the EXON20 EGFR gene, which doesn’t mean much to me so I’m guessing it won’t to you! Yes it’s rubbish but I have good days too. Hope you do too xx

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Hey, yes definitely good days when the side effects of the meds aren’t so bad, I do feel lucky that I have this gene mutation as only about 5% of all lung cancer has it present and research led to treatment. The EGFR gene is a protein in the growth cells of the cancer and the mutation of the cell causes it to multiply quite quickly. It is similar to the ALK positive mutation. These genes are generally found in younger non smoking patients. Do feel free to message me anytime if you have any questions. Regards, Bella x

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Thanks very much Bella that’s really helpful to have it described in layman’s terms. X

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Hi Claire, my mum has just been diagnosed with non small cell adenocarcinoma T4 N2 M0 or M1b (we are waiting to find out if it's in my mums kidney) We find out on Monday what treatment options my mum will be given, I hope you don't mind me asking but what is biological therapy? xx

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Hi, I’m really sorry to hear about your mum’s diagnosis. Biological therapy in my case is a pill called Afatinib which I take every day and it is targeted to attack the specific gene mutation that is causing my cancer. In my case that’s in the EXON20 EGFR gene. In my case it may work for between 8 and 18 months but in other cases such as the EXON19 and EXON21 EGFR genes there are better biological therapies that can work for 4-5 years. I’m not an expert, but i’m sure your mum’s oncologist will be able to tell you if the cancer has been tested for mutations that can be treated with biological therapy. Wishing you and yours all the best for Monday xx

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Thank you so much for taking the time to reply to me Claire xx

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Hi Clare, Thanks so much for sharing your story. I am stage IV NSC lung cancer EGFR + exon19del. was diagnosed in Dec.2018. 2 months on targeted therapy Tagrisso 80mg pill daily. My first scan showed an overall 70% shrinkage in my primary tumour and >50% for associated nodules. I don't follow the prognosis statistics since every patient is different. May I know what is your mutation and treatment. All the Best! Basha

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Hi, so pleased to hear your first scan was positive! See my reply to LemonDrops above - that’s the summary of mr mutation and treatment at the mo. I had to ask my oncologist for a prognosis but I find it so interesting that several people on here haven’t... all the best and thanks so much for connecting.

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Hi I am similar to yourself. I was diagnosed Jan 17 and started on Gefitinib which worked brilliantly for 14 months! Then I had chemo which didn't do a lot. I was then referred to Birmingham for trials and had a new vaccine which didn't do a lot but am now on chemo again which is working brilliant. After 2 chemo sessions my tumours have shrunk loads, the oncologist was amazed. Even though I feel dreadful for about a week after chemo and I have lost all my hair it will be worth it! I have never asked for a prognosis as I just live for the now and stay positive. My husband was diagnosed with prostate cancer and was told quite brutely that he wouldn't make more than a couple of years. He is 4 years in and doing great!! It's how you feel and everyone reacts different to treatment. Try to stay positive x

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Hi, sorry I didn’t reply! I’ve had four days of horrible nausea, only just got back on top of it. It’s great to hear your story. So sorry to hear that both you and your husband have been handed the shitty end of the stick. It’s inspiring to hear that you live for now and stay positive. X

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