I'm new here...

[ALK-positive89]

Hello,

I'm a 28 year old female non smoker and was diagnosed with Stage IV ALK-positive non-small cell lung cancer (NSCLC) (Anaplastic Lymphoma Kinase) in March this year. Unfortunately the cancer has metastasis to my lymph nodes, bones and brain. I'm currently taking Brigatinib as part of a clinical trail in Manchester and so far so good. I had my second lot of scans this month since stopping chemo in June and the cancer has reduced somewhat.

I'm just wondering if there is anyone else out there in a similar situation with a similar diagnosis who wouldn't mind sharing their story.

Lots of love

Lizzie xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Alk positive 89,

What a beautiful photograph,I am so sorry to hear of your diagnosis but great to hear that your cancer has reduced.I am sure you will get lots of support from the community here.If you need to speak to anyone don't hesitate to contact us at the Nurse led Helpline Freephone :0800 358 7200.

Kind regards,

All the team at Roy Castle Helpline

[Vickyv30]

Hi Lizzie, I'm 30 years old and also a non smoker. I have lung cancer with mets to my bones. I was diagnosed in August of this year and I'm also ALK positive. I'm on crizotinib at the moment but will be switching to alectinib next week. I'm really pleased that your treatment is going well

Vicky x

[ALK-positive89 in reply to Vickyv30]

Hi Vicky. So sorry for the late reply. I've not really been on here much and i'm still finding my way around. I'm really happy to hear that your treatment is also going well. You're never too far from my thoughts.

Lots of love and hope xx

[Ailsu]

Hi Vicki

Sorry to hear that. My daughter was diagnosed May 2016 ALK positive NSCLC adenocarcinoma. She was 17 then never smoked. Join closed Facebook group called ALK positive you’ll find a very supportive group of people worldwide with the same diagnosis sharing tips and stories which gives you incredible hope.

My daughter Kay’s had spread to the lymph nodes in her neck. She had 17 rounds of chemotherapy 4 cisplatin and pemetrexed nasty chemo and then 13 rounds of maintenance with side effects more tolerable. This reduced its effectiveness around June 17 and she is now on crizotinib which so far so good is working well latest Ct results best ever. She has just started University minimal side effects. She is treated by Prof Matthew Hatton @ Weston Park Sheffield x

[Ailsu in reply to Ailsu]

Sorry Lizzie not Vicki 🤣

All the best

Aileen x

[ALK-positive89 in reply to Ailsu]

Hi Aileen,

Thank you for your message. Sorry for the delay. How is your daughter? I hope treatment is going well and she's happy.

[AdamLaver]

Hi Lizzie. I’m in a similar boat, diagnosed at 37 with Stage IV NSCLC. Life long non smoker. Mets to spine. I’m on Afatinib and have been for nearly 18 months now. I’m Sussex based and have treatment in Guildford.

Not sure if you’re aware but there is a support network for young adults (20/30/40s) called Shine Cancer Support which I find very helpful. It is open to all cancer patients in that age range and has localised meet ups with people of similar ages. There’s a closed FB site you can search for.

Adam. xxx

[ALK-positive89 in reply to AdamLaver]

Hi Adam.

Thank you for your message. I have taken a look at the charity but it all looks a bit too far from where I live. I will probably have a look at the FB site and see what information I can find.

I'm please to hear that your treatment is going well. I hope that is still the case?

Best wishes

Lizzie xx

[ALK-positive89]

Hi everyone,

Thank you all so much for your comments.

It is definitely comforting to know that you're not alone. Xx