Stage 4 lung cancer

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  • 4 years ago I was diagnosed with stage 3 lung cancer which was also in my mediastinum . lymph node. Clear for 4 years after treatment. Last Dec , 6 month scan and the portal caval lymph node show carcinoma.  After pet scan , biopsy and DNA test ( rare EFGR ). Staged at phase 4 since it was the same cancer only in a different part of my body. Started a targeted cancer pill, Gilotrif 30 mg in Feb. after 9 days, many ulcers in my mouth and blood seeping from the top of my tongue. Told to stop, let tongue heal and we will try again.  Anyone else on this drug experiencing something similar?  Thanks
  • Oh Nancy how disappointing. Hope somebody can shed some light on it for you.  I did read in one of the McMillan pamphlets that pineapple helped to reduce mouth ulcers but haven't had them so no personal experience. Hope  it's a speedy recovery. Love and best wishes x

  • Thanks.  Not sure that will help as it might sting my tongue....

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I’m sorry to read about your current issues whilst on Gilotrif, it sounds very unpleasant. The online community is divided into different support groups so I'm going to recommend that you join the lung cancer group, as you'll then connect directly with others who may have experience with this drug.

    To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Thanks. Profile completed.