Bad Chemo Reaction?

[Subi123]

Hi everyone,

Wondering if anyone has experienced a bad reaction to chemo? I was diagnosed in Sept last year with stage 4 NSCLC and put on treatment plan of Chemo (Pemetrexed and Carboplatin) plus Immunotherapy. I had an anaphylactic shock type reaction which seemed to be to the Pemetrexed, and my Oncologist recommended we stop the chemo and continue with Immunotherapy only which I have done. My PDL1 markers were very high, so my Onc was confident the immuno would work on its own, however the 1st scan has shown continued cancer progression. Has anyone else had a similarly bad chemo reaction, and managed to continue successfully with it?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Subi123

Sorry to hear you had a bad reaction to the chemotherapy agent, if it has been an anaphylactic shock reaction you had, it is unlikely that they will use this chemotherapy agent again.

Having high PD-L1 markers usually indicates you may have a good response to treatment, sorry to hear there shows some progression on your scan. It may be that they will continue on the Immunotherapy and review at the next scan, as your immune system may have been compromised with the severe reaction to the chemotherapy. It would be best to be guided by your oncologist, and as you know everyone can respond and react differently to any treatment.

If you would like to discuss anything you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 385 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Subi123 in reply to RoyCastleHelpline]

Thank you, I really appreciate your reply. It's helpful to know that the reactive chemo agent would not normally be used again. Ultimately the decision was mine as to whether or not to try it again but I followed the guidance of my Oncologist and decided against it. Just wondering whether it could be an option to revisit it again now though, but it sounds unlikely

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Subi123]

Hi Subi123

We would advise that you be guided by your oncologist in this. Hope you continue to keep well and be good to yourself.

Kind regards

The Roy Castle Support Team

[mishamilo53]

h there Subi123 , I had a reaction to one of my chemo drugs on my second infusion , they tried slowing the feed down in the third but I still had a bad reaction , so for the final 3 I had just the carboplatin …. I was having radiotherapy at the same time which they said was the main thrust of my treatment …. Elly x

[Subi123 in reply to mishamilo53]

Hi Elly, and thanks for sharing your experience. It sounds like you had a tough few treatment sessions. Interesting that you continued with Carboplatin - I don't think that was an option for me but it sounds like a good compromise in your circumstances. I really hope it has been working well for you 🙏. I'm still getting to grips with this whole situation and just hoping my next scan shows some improvement 🤞... Suzy xx

[mishamilo53 in reply to Subi123]

aw Suzy who knows love … I’ve scan anxiety at the mo , results in Friday … I’m still getting to grips too , it’s a lot to take in isn’t it …. I read someone’s post awhile ago that suggested that sometimes the first scan after the start of immuno can show a progression as the tumour uptakes the immunotherapy. It may be a question to ask … and maybe you could try a different chemo drug in the future ? Good luck with the next scan x

[Subi123]

Thanks Elly, yes I heard that can sometimes be the case as well so I'm trying to keep positive! Everything crossed for your results on Friday 🤞 xx

[mishamilo53 in reply to Subi123]

thank you x

[sassassas in reply to Subi123]

Hi Suzy

Yes, this is a real thing - its called pseudo-progression and its where the tumour sometimes looks bigger on the scans after the immunotherapy starts.

Best wishes,

Sarah x