ALK mutation

Hi, I've just been told I have an ALK mutation. I'm stage 4 lung with mets to spine ,pelvis and liver. I'm waiting for a scan after three sessions of cisplatin and permetexed to see what's happening. My oncologist is looking at targeted therapies, does anyone have any success stories or have been on any of these drugs for some time? I think they are looking at crizitonib or Ceritinib? Are these any good? If the tumour shrinks enough can it become operable?

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  • Hi, I was diagnosed with ALK mutation in November 2013. It was in my lung, bones, eye, brain and liver. I have cisplatin and permatrexate, then a break, then maintenance permatrexate for approx 9 months and then a break. I have been on crizotinib since April 2015. I em to be stable now with it only in my lung. I have monthly appointments at the hospital and scans every two months. I had lots of side effects with the first treatment but am a lot better with the crizotinib.

    I was diagnosed when I was 49 and started to loose sight in my right eye. A secondary was found there. Please feel free to ask any questions. I am happy to answer. There is also an American website called Inspire, it's worth looking on there. They have a special section for ALK posts. One lady has lived 11 years since diagnosis, others 7 years.

    Best wishes xx

  • Hello there. I've been on Crizotinib since June 2014. My history is one of radiotherapy and chemotherapy, removal of my left lung followed by more chemotherapy. It is was at this stage they tested me for ALK and prescribed Crizotinib when they found me to be positive. Although asymptamatic, they did a precautionary brain scan which showed a small metastatic tumour which responded to gamma knife treatment. Within 6 weeks of taking Crizotinib scans showed some tumours had disappeared and others up to two thirds reduced in size. 6 monthly scans and continuing 2 monthly consultant appointments have shown the tumours to be stable. My side effects are well documented on this website ( key Crizotinib into search box ) but I have to say they are minimal compared to those suffered after chemotherapy. They mainly centre around the stomach - feeling bloated and then having diarrhoea. I try to avoid Imodium or similar products because the following constipation can be just as bad. Whether it is a side effect or not, I suffer from low vitamin d and testosterone. This causes a lack of energy and tiredness but since taking vitamin d supplements and getting as much sun as possible my life has improved immensely. I lead a normal life.

    Good luck.

    Colin

  • Hi, yes stage 4 lung cancer, I'm taking arressa target therapy, was diagnosed in Dec 2012 and still hear to tell the tale feeling quit good, not a lot of side affects only dry skin and dry heir, but all in all feeling not bad.

    Hope yu get on well with the target therapy treatment good luck.

    Jean

  • Hi. My husband was diagnosed with lung cancer in April 2012. After 3 lots of chemo and some radiotherapy over that time our consultant sent him to Birmingham to be gene tested in the matrix trial and after a further biopsy (his original was to old) he was found to be ALK+. Steve has been on crizotinib since September and at a scan at the beginning of February there had been some reduction. There are a few problems like a little swelling of the feet and ankles towards the evening, flashes of light that last seconds when going from dark to light and a few stomach problems which he has found the best way to manage. Nothing like the chemo problems in the past. He had a very bad back when he started taking the drug and within a week it was so much better. We are hoping that he is able to stay on it a good length of time as we feel it has given us our lives back as he is feeling so much better and life is quite normal again. Apart from blood tests and appointment once a month and a scan every three months that is! We're still enjoying life almost four years on from a stage 4 inoperable diagnosis! Good luck to you in the future. Jan.

  • Hi all,

    My sister has ALK+ and is now on Brigatinib after 2 years on Crizotinib. She's stable on Brig and is doing OK.

    But I'm curious about what comes next. I think the 3rd-gen drug is called Lorlatinib. Does anyone know of its availability in the UK?

    Apparently it can resensitize a patient to crizotinib, which is great news.

    Cheers,

    Richard

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