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Does anyone else have ALK positive lung cancer?

Katielw95
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My boyfriend has recently been diagnosed with this form of lung cancer. 

I just wanted to know if anyone else on here has been or knows someone? 

I would like to hear their/you’re story and how their/you’re coping? 

I’m finding it hard to understand and get to grips with this dramatic change to our life. 

Thank you 

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    I don't know anything about ALK but guessed that it is something pretty rare and that nobody else on this forum knows much about it either. I typed ALK Positive Lung Cancer into the box marked Search Forum and it took me to a list of where previous posters have written about this; I just thought you might like to read these (and I didn't want you to think that nobody cared!)  The people on this forum are great but there are so many cancers and so many variations individuals may think they cannot help with something of which they know nothing.  So I wanted to say "welcome" and with a bit of luck the earlier information I have mentioned may make useful reading.

    Best wishes.

  • Offline in reply to Annieliz

    Thank you so much! 

    Yes it’s a pretty rare one would just love to hear someone one else’s story with it and find out how they’re coping! 

     

    Thank you ever so much! 

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    Dear Katie I am so sorry to hear about your boyfriend's diagnosis. I was diagnosed last March and apart from an ongoing cough, I didn't feel too bad. To start with I was on normal chemotherapy, which seemed to be working for me but my kidneys had other ideas. By this time the gene result had come back and I am one of the 5%, so my oncologist switched me to alectinib. The full dose of 4 tablets night and morning was too much for me, the blood tests weren't as they should be so I am now on 2 twice daily. Apart from a metallic taste when I eat fruit it all seems to be going OK. The oncologist assured me I will have several more years and who knows, in that time, something even better might come along. Try to forget it as much as you can and enjoy your life together. Good luck! JDM
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    Hi Katielw95

    I was reading this forum as I wondered to about other people in the same situation as me. My partner to has ALK lung cancer which we found out last september it was a big change in our lives to find out this and it changes everything. My partner is taking alectinib and is all going well on this so far. We try to stay positive as he is so well so far and enjoy are time together. It is hard though sometimes but we try. Sorry to hear your boyfriend has this to. I understand what your going through hope you are both doing ok.

    Best wishes.

  • Offline in reply to Katielw95
    Hi. I have just joined and seen your post. I was diagnosed ALK positive two and a half years ago, on Crizotinib and doing ok. How about you?
  • Offline in reply to Mcalbay

      Hi glad to here your doing ok I joined here earlier in year as my partner is ALK positive which we found over a year ago he is doing ok to he takes alectinib and seems to be going well so far. Dont know of anyone else with this type of lung cancer seems quite rare so is good to hear about how your doing.

    Take care.

  • Offline in reply to kezl7

    Hi. Glad to hear from you. I’ve heard great things about Alectinib. I also belong to a world wide support group on a closed Facebook page called ALK Positive which is brilliant and I have met up with other “Alkies”/carers and relatives in my area (South West London). We also have have ALK Positive UK. You’re right there aren’t that many of us but it’s nice to find out about other ALK Positive patients and hear how they’re getting along.  It’s good to hear your partner is doing well. 

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    Www.alkpositive.org.uk is for UK patients with ALK Positive lung cancer and for their carers and family. Check out their Facebook page

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    Yes my daughter Kay diagnosed May 2016.Go to alkpositive.org.uk

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