Hi. I was diagnosed with non small cell lung cancer two and a half years ago, I'm ALK Positive and on Crizotinib. Just wondering if there is any one else out there and how they're getting on.
I hope you will meet others here who are also ALK Positive and that they will share their experience with you. Feel free to do a little search on our forum by entering keywords such as ALK Positive or "non small cell lung cancer" (in the search tool in the blue banner at the top) . You will be able to find past relevant threads and respond to any that are of interest to you.
Our nurses are also available on this free number if you live in the UK 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm and you are welcome to give them a call if you have any questions.
Hi there.I am also alk positive and am on Crizotinib.I was on a different tablet but as this was making me sick I was changed to crizotinib.touch wood I having been doin well on these and my cancer has been shrinking.I have been in hospital a few times but this was mostly for pain management. Hope your doin as well as you can be x
Great to hear from you and that Crizotinib is working well but sorry to hear you've had to spend time in hospital. I hope they were able to help. Crizotinib is still working well for me after nearly two and a half years and fortunately I am able to get on with my life without any problems.
Fortunately I'm doing well on my Crizotinib. I belong to a brilliant support group called 'ALK Positive' and 'ALK Positive UK' which is a closed page on Facebook. Have you heard of it? There's also a website alkpositive.org.uk. It's very supportive and informative and I have met several people on it. The main one is worldwide but the UK one is great for people wanting to know more about people and treatment in the UK. I'm not sure if I can mention this or if you have to approve this first.
I used The Cancer Research website a lot when I was early diagnosed in May 2016. I thought it was the best for information. I even phoned one of your nurses once. She was so nice. And I've even been supporting you for the past 20 years, but you never think it's going to happen to you!
Hello. I am Alk Positive and was diagnosed 1 year ago, I'm on Alectinib and all was well until yesterday at my check up at the hospital when a small lump appeared in the same lung, the Professor was not unduly worried but I have to go back for a scan earlier than my normal 3 monthly one in 8 weeks. I seem to be in this bubble of not having a future to look forward to but not feeling as if I'm really ill. How do others feel?
my mum has just been diagnosed as alk positive and she says that she feels the same as you. She feels really odd and like it’s not happening to her. She keeps waiting to feel ill. It’s so sad that it’s hsnging over her. I wish I could take it all away. I hope your scan goes well and that it’s nothing to worry about. Good luck x
I'm a part of a charity created specifically to support patients in the UK with ALK positive lung cancer- we're called ALK Positive UK! You can find us on Instagram, Linked In and Twitter. We also have a closed Facebook group purely for patients which is a safe and closed space where patients can share experiences and support one another as well as a patient forum. Our aim is to raise awareness of ALK+ lung cancer and work towards reducing the stigma around lung cancers and the funding disparity between lung cancers and other types of cancers.
I got diagnosed Alk pos in Feb - really difficult trying to remain positive and push on with life with this diagnosis. Can really sympathise with other posters - I feel fine and still can't really believe i'm in this situation. I'm on Alectinib, decent first two scans thankfully. Guess we have to stay positive... ironically. Go well x
Hi have just read your post and am recently diagnosed with Stage 4 Lung cancer and commenced on Alectinib and wondered how you were getting on. Hope you don't mind me asking.Thanks
Hi there - i've been on it since Jan this year - got some mild side effects - it's made my joints in my ankle sore and stopped me running - can still get out and walk the dog but not as far as i'd like - bike riding is fine though.
Other than that it's doing its job - so far it's contained everything so I really hope you get the same response.
All the very best to you - don't hesitate if you've got any other questions
