Anyone exon20?

Hi Divine Ms M, I have done a general search in the lung group for Exon20, which unfortunately didn’t bring anything up from anyone who is still active in the group.  

Am I correct in saying it is a gene mutation? And will that mean you will receive targeted therapy for it? 

Hi Chelle and thanks. Yes it’s a gene mutation that, to date has not got a tki. Janssen have something on the boil and I’m hoping to access that

Hi Divine,

Just wanted to say hello! I've literally just joined this morning, my mum is Exon 20 positive. She has just commenced her second line treatment of mobocertinib last week. Unfortunately she has been taken off it due to side-effects but hopefully will resume again shortly. I saw in another post you are on Amizantamab, may i ask how you accessed this? Mum has had her care transferred to the Marsden in London to access mobocertinib as it wasn't available at her local trust, we also got a quote for self funding amivantamab. 

I'm sorry there's limited numbers of Exon 20 people on here, please don't feel alone! i've also joined

Exon20 group: https://exon20group.org/intake.html

EGFR+UK: https://www.egfrpositive.org.uk

Exon 20 warriors: https://www.inspire.com/groups/exon-20/

The first and 3rd are American based but given that they're ahead of us and leading the research and approval of drugs I figured this could be good and the second is a support group in the UK via fb. I can't vouch for them but I posted on the uk this morning re: mums side effects and have already had a response. 

Anyway i'm going to post re: mums side effects (which i think are different to yours) but just wanted to say an exon20 hello.

Jo

Hi Divene Ms M,

I’m Exon 20. There is an Exon 20 group on Facebook that you can join… they usually have a lot of information about treatment options and side effects etc. I find them pretty useful!

Gini x

Hi 

I’ve just seen on another post that you have started amivantamab. How are you finding it? My oncologist said that they can also get hold of Mobicertinib if needs be, so that may be your next line (just FYI). I also had a long chat with Marcia Horne (head of the Exon 20 group in the states). I highly recommend contacting her… she is just a font of knowledge when it comes to Exon 20!

I’ve just had round 3 of chemo. I was on cisplatin + pemetrexed but they had to switch to carbo this round as my hearing started to go funny. I’m only due one more round… so will need to see how I go with my kidneys (as they also went a bit wonky a month ago, but they are monitoring closely). Good luck with your treatment-I hope it serves you well. I know the effects on ami effect people differently, but a break and possibly lowering of dose has been really successful in others.

Gini x

Hi and we tried to get amivantamab but really struggled, may I ask which trust you are under?

Jo

Sorry for the late reply but ive had access problems and now have a new profile which seems to work!

Thanks Gini-joined fb now x

Sorry for the late reply but ive had access problems and now have a new profile which seems to work!

 Thanks for the info-im in the warriors and just joined fb.

im the only one in my trust on ami and got access through the Jansen programme. You had to have progressed post platinum based chemo and they fund it. Ive currently been halted due to side effects but hope to resume

is mum marsfen sutton or central London and how is she doing? I hope its working for her?

do lets stay in touch. x

Hi Gini

initially it was a breeze then a face/scalp rash but managed to get rid of that. Then bleeding fingers and toes which were v painful too so on a break now. Previously on nov/pem but had to stop as kidneys didnt like it. I hope the chemo is working for you as i know how frustrating it is to switch/stop.Like you I joined the warriors and lots of info!

Lets stay in touch c

Hi Jo, just sent mail re access but im under st georges having switched from marsden. Hope you can access x