ALK positive

[Bow-19]

If you are ALK positive, would you be able to let me know what treatment you have received. I have had specific chemotherapy permatrexate n cisplatin, then maintenance chemotherapy of permatrexate and am now on Crizotinib, which I have been on approx 14 months. What treatment are you getting? I am glad of any response. Even if you have had the same treatment as me.

[rebelina]

My brother has "granular positivity for ALK" on IHC, but due to a poor biopsy on diagnosis in December 2014 they couldn't confirm his ALK status via FISH. Another biopsy hasn't been possible so far due to lack of anything to biopsy in his lung (he also has extensive brain mets, but a biopsy of one of those isn't standard on the NHS...). He has been on cisplatin and pem (4 rounds) then maintenance pemextrexed until about 8 weeks ago when he had to stop due to decreased renal function and generally feeling like he had no quality of life on the chemo. He is on a "watch and wait" just now. So that's nearly 18 months post diagnosis with significant shrinkage, then stability. Glad to hear crizotinib is working for you. How do you find the side effects? You may like to join the Facebook group for ALK positive people - it's called "Living with Non-Small Cell Lung Cancer and ALK Mutation". It's very good indeed - lots of support and information, and quite a few people there from the UK. x

[Bow-19 in reply to rebelina]

Hi Rebelina,

Thanks for your reply. It sounds like your brother is being treated in a similar way to me. I was diagnosed in November 2013 when I started to loose my eye sight in my right eye. A biopsy was taken from the tumour behind my eye and this showed that the primary tumour was in my lung. I had pleuradesis of my right lung and a biopsy was taken. I had the same problem as your brother after being on the maintenance permatrexate. I was unable to keep food down for the last 3 months of it. I had District Nurses visiting twice a day for 6 weeks to put anti sickness meds, metachlopromide, into a syringe driver. I also felt that I had no quality of life and started to take 10mg of citalopram daily. My renal function was also impaired, EGFR was 24 and creatinine levels high. I had no treatment for a couple of months and then started on crizotinib. I found the 250mg twice a day made me sick. It was reduced to 200mg twice a day and I take cyclizine, anti sickness med 3 times a day. I have felt really great whilst taking the crizotinib, family and friends have been amazed at the difference. I am now sick approx once a fortnight and have swollen ankles. I can't fit into some of my shoes but I can fit into others. I was adviced by the pharmacist to take it either with or without food but to do the same each time. I take it at 9am and 9pm with food. I hope that your brother feels like I do when he takes crizotinib.

I fell down the stairs last year and fractured a vertebrae which was very painful. I had to have very strong pain relief I had to have fentanel patch, amitriptyline and gabapentine. The last 2 did react with the crizotinib and I had to report any changes quickly so it could be managed and it was.

Thanks for the tip re Facebook, I will join. I also use Inspire, the American website which is good.

Wishing you and your brother all the best x

[rebelina in reply to Bow-19]

Hi bow-19. Wow, your eGFR was very low. My brother's is still a comparatively okay 51. I'm so pleased you are doing well on crizotinib, but very sorry to hear about your fall. That must've been awful, on top of everything else.

My brother was very interested to hear you had a biopsy of your brain tumour behind your eye. It may be the only place they can get access to something to biopsy in his case, but we've been told it isn't standard. One of his brain mets was 3.8cm but has been stable at 2.5cm for about 16 months now. His symptoms were headaches and vision problems.... but it took them ages to diagnose. He had a chest xray 4 months before diagnosis as he had a slight cough.... and they missed the tumour... . He saw the xray, and it was visible even to a lay person. The lung cancer nurse specialist said "in retrospect, now we know it's there, you can see it". Very sad.

Without a second biopsy he may not qualify for crizotinib as his IHC result of granular positivity is still considered negative without confirmation. We keep our fingers crossed for the future wrt ALK. Thanks for the information about your experiences of crizotinib.

I use Inspire too. Our paths might cross there (I use the same userid as here). The Facebook group is fantastic - hope to see you there too although I'm not sure we will recognise each other!! It's very well run by the moderator and he promptly kicks off people who don't have a relationship with ALK NSCLC. It's also a closed group so only group members can see your postings.

Take care and wish you the best.

[Bow-19 in reply to rebelina]

Hi Rebelina,

Yes, EGFR is still low and since it has been I have been reacting to iodine contrast when having ct scans. Now no contrast so I wonder how this affects the report.

I think the biopsy was classed as from my eye rather than brain so that could explain why they did it. I started to loose vision in right eye on 5/11/13 and popped into an opticians at 5 to 5 that night. At 9.30pm a Consultant at Manchester Eye Hospital was holding my hand (alarm bells started to ring) and telling me I had a tumour behind my eye. I went back the next day at 9.30am where she had arranged for me to see a Retinal Consultant who confirmed this. He referred me to Liverpool, one of three ocular oncology centres in England. I saw the Professor there, the following Monday and he said I had a tumour and that a biopsy would be needed to confirm if primary or secondary. The biopsy confirmed a primary tumour in my lung.

I was in a similar situation to your brother. I started with a cough in December 2012, after two lots of antibiotics failed to treat it I was referred for a chest X-ray. This showed something and I was referred to local lung cancer clinic. I saw the Consultant there in the January and he said that I was an inappropriate referral and that my cough would go in 4 to 12 months. I had right middle lobe collapse and he said it was common in women in their late forties who lived in this area!! I thought he knew what he was talking about and listened to him, big mistake. The Clinical Director of Radiology saw the ct scan and said that I needed a biopsy to rule out an endothelial lesion. A consultant chest radiologist then put a line through the clinical directors reporting and wrote benign!! Six months later I had bad rib pain in my right side. I saw an out of hours GP who adviced that I needed an X-ray. X-ray was reported as normal by another Consultant Radiologist and so when I went to GP they said all normal. It wasn't normal it was worse than it had been in the January!!

When the biopsy of my eye confirmed lung cancer I refused to be treated at my local hospital. As I didn't trust them. I was seen by a Consultant in Manchester and when he saw the X-rays and scans, he was horrified that it hadn't been picked up in the January and that I hadn't had a bronchoscopy. He put his hands in the air and said that this shouldn't have happened and showed us ct and X-rays that I had had taken.

I put a complaint into the local hospital and met with 3 of the 4 Consultants involved and told them my story in the hope that it doesn't happen again. It took a lot out of me emotionally. I have since found out that the dept was in special measures at that time. I hope that they have learnt something from listening to my experience.

Hope I haven't waffled on too much

Best wishes

[bevbettison]

Hi I had the same chemo as you and then the maintenance chemo of permatrexate unfortunately ive now made the decision with my family not to have any more treatment as I was still so ill with the permatrexate on its own and it stopped doing its job. However the same treatment can affect people very differently. I made the difficult decision in January not to have any more treatment and though I am still ill from the lung cancer , the pain is controlled and I am able to go out and about without worrying if I would be ill. I am still a little sick but can cope with it compared to how I was before. you have to rmember that everyone is different and what works for one maynot work for another. Your Consultant knows you and what is best for you . we can all tell you what treatment we had but as I say we are all different, God Bless x

[Bow-19 in reply to bevbettison]

Hi Bevbettison, I am very sorry if you have taken any offence by my reply. I can honestly say that none was meant. I know only to well that everyone is different and responds differently to treatments. I am only using my story to say what has happened to me on this journey and if possible give others in similar situations an insight into this. I have not met anyone else who is ALK positive so this is the best way for me to learn about my condition and help others to learn about theirs, along with Oncologists advice of course. I fully respect your decision and wish you all the best x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

It is valuable to hear the different and varied experiences of people with similar conditions and symptoms and the various treatments received, it can be confusing and worrying when you hear of others on different treatment regimes but it is important to remember that these regimes do vary depending on the location, stage and type of tumour also on your general health, underlying health conditions and how well you have responded to treatment. The information from others journeys can help and guide you in any questions you may want to ask your oncologist It is important to remember that everyone's journey is different.

if you would like to speak to someone our helpline number is 0333 323 7200 ext 2