I was diagnosed with stage 4 lung cancer 14 months ago non small cell squamous - tested positive for ALK mutation in Feb started on Xalkori in April just had 8 week scan results and it shows significant reduction in all tumours. I'm wondering if anyone else here is on it?
Susan
Hello Susan. I've just started on Xalkori in the last few days. Apparently we are a rare breed. My history is that I was diagnosed with Adenocarcinoma 2.5 years ago and underwent radio and chemotherapy. 8 months later I had my left lung removed followed by more chemotherapy. I'm undergoing treatment at Guys Hospital where I've been informed that there are 12 patients in the South East currently diagnosed and on this medication.
I'm glad to hear your good news and may your health continue to improve.
I was diagnosed the adenocarcinoma last ( November 2013 ) and tested for ALK before I started any treatment. As said a rare breed, I tested ALK positive. I was at stage 4 when diagnosed and had 4 cycles of cisplatin and permatrexate. I am now on 3 weekly permatrexate. When this no longer works or I can't tolerate the side effects I have been told the next stage will be an ALK related drug. Great to hear positive results from the drug that you are taking that's brilliant news. Long may it continue.
Hi both
I'm the only person in Shropshire to ever have tested positive so I'm kind of paving the way here 
I had 4 cycles of chemo last year gem/carbo didn't work at all and caused a flare of loads of tiny tumours I was on my last legs when I started the Xalkori but the response has been phenomenal I feel better than I did before I knew there was anything wrong with me - I've been lucky to not have many side effects so far - glad I've got some company on here xx
Hello again. Whilst I've been told what the possible side effects might be would you mind letting me know ( and others ) what side effects you actually suffered. I know everyone is different but an indication would be helpful. Take care.
Hi Sammyboo69
That's fantastic news, so pleased you're feeling better and tabs working for you...
I've been on Iressa now for 13 months, and like you feeling good.
It's great they are finding new treatments for us all....xx
Take care
Karen xx
Lifesab
Not too many side effects to start with vomiting an hour after taking tablet read on American Inspire website to try protein before and a little bit of protein after taking pill now have no sickness and have managed to stop taking anti sickness all together which is cool as they were making me tired.
Swollen ankles normally a sign I haven't drank enough 3 litres seems to do the trick it also helps liver and kidneys as blood work has kidney creatinine function ever so slightly on the high side 1or 2 points above normal. Liver has all retuned to normal since starting on tablets and the reading were off the chart before.
Very random diarrhea followed by constipation so difficult to treat I tend to put up with it until it's maybe 2 days in a row then take Imodium.
Nothing has been unmanageable in first almost 12 weeks it's so good I can't quite get my head round it all when you learn to deal with so much bad news good news is almost just as difficult to handle - I'm 100% convinced that cancer is a mental battle and it's so good to feel so well it's almost unbelievable my head is really struggling to keep up with my body lol.
There is a lot of info right back to when the trials started on the inspire website and some folks are getting years on this stuff and a generation 2 and 3 in trials - never did I think I'd be using the word lucky when talking about myself but with squamous cell I was in -ve probability of matching and only tested as I'm only 43 - 3rd biopsy as well after 2 failed ones which I really didn't want to do - was 3 days before Christmas and I told the biopsy team I needed a Christmas miracle we all waved good bye to the specimen and here I am still here and more importantly feeling great. (If a little tired from doing far too much but it's hard to hold back when you feel like you could run through the Daisy's rather than be pushing them up )
Thank you so much. Your advice is invaluable. It's encouraging to hear what you have to say. On a practical note, not sure if you have applied but you are entitled to benefits ( PIP) as we are deemed to have an incurable disease. Thanks again.
Hi Everyone.I am 55 years old and very fit as play tennis 2-3 times a week and have never smoked. This made it hard for them to diagnose me (1st september 2017) as have not lost any weight. I Have just started on Xalkori 2 weeks ago being stage 4a with a 2cm lump in RH lung, also tumors in all 3 RH lymph nodes (one that is blocking airway to RH lung) ,1LH node and a small tumor in a lymph node in my chest. I have few symptoms so far as still playing tennis although takes double the effort. Sometimes I cough and splutter for the first 20 minutes but then breathing gets easier the longer you play for. I usually come home feeling so much better for the exercise both mentally and physically.
The only side effects so far seem to be a little dizziness when doing heavy gardening and felt sick one morning when I had the tablet 2 hours later than eating breakfast.
I have been researching RFA treatment which they do only at Harefield hospital in the UK. It seems that they use it in other countries but not much here yet. It seemed to have a good result as a combination treatment. I have managed to get a referral and have an appointment on Monday to see if I am suitable. I will keep you posted.
The Oncologist seemed a bit reluctant for me to go for the RFA as she said it’s a curative treatment. –I thought surly that’s what I’m after. Anyway after persuasion she faxed the referral off at my request and - just got referred to the consultant that does this treatment at Harefield or one of the London hospitals if I go for it privately. I have the appointment on Monday! –result!! I have learned that quite often it seems to get the best treatment you have to do your own research and drive the treatment yourself.
You also need to phone the secretary of the consultants in order to see if they can bring appointments forward as sometimes the system books them 2-3 weeks later.
Kidney level dropped...anyone else had this? 
Stage 4 ALK positive Mutation - on Crizotinib
Anyone else on maintenance pemetrexed and keytrunda
