Stage 4 NSCLC

My Mum has been diagnosed on 25 Oct 2018 with  Stage 4 nsclc with multiple metastasis to the brain and adrenal  gland. Mum has completed 10 days if WBRT and will be starting Chemo in a couple of weeks. This has been absolutely devastating to our family and am unsure what lays ahead. I suppose I am wanting to hear from anyone that has or is going through a similar situation. My mum is 59 so still so young.

  • So sorry you had no replies. I dont have any advice but wanted to say thoughts are with you x

  • My mum was diagnosed with nsclc with multiple brain mets in july , she has had 4 sessions of chemo and after her second chemo session she was scanned and the cancer had got smaller . Always here if you want to chat x

  • Hi sorry to hear you are experiencing the same devastating time as we are... my dad has been given the exact same diagnosis at the beginning of November. He is starting WBRT on Tuesday 5th December for a 5 day course then potentially chemo after that. It has been a massive shock to our family and it’s hard to know how to deal with everything. I’m worried about the radiation treatment in case it gives dad lots of side effects but it’s the only option we have at the moment. How was your mum after her treatment ? 

  • Thanks for the response, that is great news that the Cancer is getting smaller. I hope you don’t mind me asking some questions.....Is the Cancer in the brain also getting smaller from Chemo? I was under the impression that Chemo may not work for the brain metastasis. X
  • Hi 

    Mum completed 10 days of WBRT. Prior and whilst doing the WBRT she was on steroids and endo for the headaches. The side effects for WBRT were minimal, little nauseous (Mum took anti nauseous tablets 45 min before each treatment to help prevent the nauseous which helped), fatigue and a funny taste in her mouth for a little bit after each treatment. The fatigue gets a little worse after treatment has stopped, Mum said overall she feels quite well and is still active just a bit slower.

    About 4 days after the treatment had finished Mum’s hair started to fall out in clumps.

    Another thing Mum found helpful was having a relaxant 45 minutes before to help with anxiety, this may be helpful if your Dad feels a little anxious. The treatment is quite quick and does not hurt but can feel a little overwhelming being constricted by the mask. 

    I hope this helps a little. X

  • Yes it has got smaller in the brain, they told us at the begining that it was hard for the chemo to cross the blood, brain barrier but it did. Mum has been very tired and has spent all her time in bed inbetween sessions x

  • HI!

    I was diagnosed with stage IV NSCLC in October 2015 !!! Since then i had two diffrend chemo's and now since August 2016 Immun Therapy with Nivulumab. All Mets nearly gone, the big one in Brain removed in surgery and only side effect is my Thyroids are playing up. But got tabletts for it. So after over 3 Years in still alive and well. So please dont give up hope!!!

    Petra

  • Lmw39,

    That is great to hear that Chemo has managed to reach the brain metastasis, it gives me some hope. I wish all the best for your Mum and your family. X

  • Hi Petra,

    That is great to hear that you are doing so well, it really does give me some hope for my Mum. 

    Thank you for sharing.

    Melissa