Hi,
After 8 rounds of chemo I'm now on mobocertinib. I was on it about 3 weeks on full dose, 160 mg/day, but my liver wasn't happy with it. After a break of a bit over a week, I've now been on 120 mg for about 3 weeks, no serious side effects. The cancer was hidden by a bulging disc, so it was a grade 4, with metastases mainly on my pelvis, when it was discovered, so I'm on crutches. I've had a brain metastasis removed as well, so am now living my life to the fullest, travelling while I can, staying positive but also planning my funeral.
I'd love to discuss life and treatments and side effects and fun things to do with others, maybe even with the same diagnosis?
Hi KAH
I'm Steph from the Community team. I hope you don't mind me replying here today whilst you're waiting for other members to reply.
It sounds like you're happy to hear from anyone in the forums, so I hope bumping this thread helps you connect with others in the lung cancer forum.
If you're looking for previous conversations around Exon20 and Mobocertinib, you might find the following links helpful:
exon 20 insertion mutations - drug approval
RE: New here, EGFR Exon20 inversion mutation, incurable
It's good to hear that you're staying positive and I hope you find it helpful to be here. Planning your own funeral might be a difficult thing to talk about, but the Community is a safe space where you can share your thoughts. Our living with incurable cancer forum would be a safe space for you to talk about planning your own funeral. It's a lively and friendly forum where people connect through shared experiences, through both positive and more challenging times.
If you'd like to talk anything through with someone at Macmillan, I’d encourage you to give our Support Line a call. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
Please do ask if you have any questions, or need any help finding the right support.
Best wishes,
