The Roy Castle Lung Cancer Foundation

Chemo Brain turned out to be a small stroke

Hi all, thank you for your replies to my last post regarding "chemo brain". Here's an update - my husband was very confused, absent minded and fatigued over Christmas. I was worried that the cancer (squamous nsclc stage IV) had spread to his brain. We spoke to the clinic early January and they did a brain scan. Turns out he had a small stroke, apparently a bleed rather than ischemic. My reading suggests it might have been caused by his low heamoglobin / platelet count. Does anyone have any experience of this?

Anyway, this is good news, how bad do things have to get that you tell people "good news, it's a stroke"!

So...more good news, he's been invited to take part in a Nivolumab trial. My research seems to point to this being the best available treatment with excellent outcomes. I won't believe it until he's sat in the chair with tube in his arm. I expect everyone feels this way, you get the hope knocked out of you a bit.

Next questions, for those who've read this far...

- Is anyone else on a Nivolumab trial?

- What is your experience, has it helped?

- What side effects have you had?

Sounds like an exam question, sorry, just trying to get as much info as possible. We've said yes to the trial but I think firsthand info from the community would really help my husband.

Thank you all for your responses to my last post and your kindness and concern.

Kate xxx

3 Replies

Hi Kate

Didn't want to read and run as I see you haven't had a reply to you post. You are right. Most people would see a stroke diagnosis as a really serious thing. Strange how lung cancer changes your whole view on what's serious and what's not!

Nivolumab is supposed to be an amazing drug. (I'm sure you already know that!) During my husbands illness we were in touch with a friends son who is a research scientist. He and his collegues were so excited about this drug. I'm really pleased your husband has managed to get on the trial. Unfortunately my Neil didn't get as far as needing this second line of defence so I'm not able to say anything about the side effects but hopefully you will find other users who can answer your questions. I wish you both well



Thank you Netty for taking the time to reply. Sorry to hear about your husband, my thoughts are with you. I'll keep you updated on progress, I won't really believe it until he's in a hospital chair with a tube in his arm and the drug being administered.

Kate xxx

1 like

Thank you Kate. Please do keep us informed. Although it's to late for Neil I still take a very keen interest in how others are getting on. I lost both my grandmothers to lung cancer and we also lost Neils aunt in 1999. Neil was 54 as was his aunty and my maternal grandmother was 56. I wish your husband and yourself all the very best.

For my part I will continue to make donations to the RC lung cancer foundation in Neils name as I was shocked by how little things have changed with this disease since my grandmothers day.

Have a good day both of you



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