Alectinib (Alecensa) : Medicine... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Alectinib (Alecensa)

NicF4
NicF4Administrator

Medicine consortium time again. Looking for any patient and carer experience of Alectininb (Alecensa). please get in contact if you have had any experience with the drug. We don't need personal details, we just need quotes to help with the application. you can call us on 03333237200 (option 2) or you can PM me on here. Quotes really help the application to gety the drug passed for use.

thanks

Nicky

3 Replies
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After approximately 2 years of misdiagnosis (weight loss, fatigue, constant clearing of throat, cough, unable to take in a deep breath, back ache and shoulder ache) my marathon running 30 year old daughter was diagnosed with the earth shattering diagnosis of stage 1V lung cancer.

After starting one round of chemo, which she sound absolutely horrific, the full results of a tissue biopsy arrived with the game changing result that she was ALK +.

She started on Crizotinib which she was truy grateful to receive, but it came with horrible gastrointestinal side effects, which made working in a gym very difficult. We soon learned also that this drug has little or no protection of the brain!!!!

A few weeks later her fabulous Oncologist informed her that he had gained early access to Alectinib for her This drug, she was told is more potent, usually has less side effects and crosses the blood brain barrier.

She has been on this drug for 8 months and basically it has given our daughter back to us.

She runs her own successful business, just ran 10k in 47 mins and 49 seconds, is currently on holiday with her partner and little dog and basically doing everything a 30 year should be doing.

I have seen first hand as a Mum how miraculous this drug can be. Truly breaks my heart that others are being denied this drug, it just makes absolutely no sense! !

NicF4
NicF4Administrator
in reply to Leslie42

Hi Leslie42

Thanks so much for commenting, If you are happy i can use a lot of what you have written in the submission. I will not include any personal details. It is really nice to hear such positive comments about a lung cancer treatment as patients don't often get the luxury of treatments allowing them to run Marathons or continue working.

thanks again

Nicky

Leslie42
Leslie42
in reply to NicF4

More than happy for you to use all or parts of what I’ve written.

Hope it helps x

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