Lung cancer at 18 years old

[Ailsu]

My 18 year old daughter was diagnosed with non small cell adenocarcinoma last year.

[Bow-19]

How is your daughter now? Has she been tested for mutations? I only ask because I have an ALK mutation and there are people in the support group that I use on Facebook who are very young too. Wishing your daughter the best treatment Xx

[Ailsu in reply to Bow-19]

She has been on maintenance pemetrexed following initial 4 cycles with that and cisplatin.

She is ALK positive and is about to start a daily tablet not sure which at hospital now.

I'm interested to hear of anyone else so young as I know it's unusual but on the increase.

She has managed to go to college this last year and is hoping to study nursing.

[Ailsu in reply to Bow-19]

She is starting on crizotinib which I see you have been on for sometime. How are you?

[Bow-19 in reply to Ailsu]

Hi yes I been on crizotinib since May 2015 and am doing well with it. I had cisplatin and permatrexate, then permatrexate maintenance too. The Facebook Group has over 500 people on it world wide who are ALK positive. It's a closed group and so you have to say why you want to join, they accept people who are ALK positive and their carers. I would wholeheartedly recommend it , its the best source of support in relation to ALK specifically their website is facebook.com/groups/alkiesww. I also find this website and the American Inspire website useful too. Wishing you and your daughter all the best Xx

[SAH1]

I'm so sorry to hear that. How is she. Wishing you both all the best.

[Ailsu in reply to SAH1]

She's doing ok thanks. Hoping to go on holiday next week. Thank you

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI Ailsu,

Good to hear that your daughter is doing well at the moment.Bow 19's advice has been has been very informative and very positive.Please don't hesitate to contact the nurse led Helpline in the future if you or your daughter need to talk to someone:Freephone 0800 358 7200.

Kind regards,

All the team at Roy Castle Helpline.

[Ailsu in reply to RoyCastleHelpline]

Thank you