Hi all, I'm new here. In 2023 I was diagnosed with limited stage small cell lung cancer. Yes I was a smoker. Went through chemo and radiation with Cisplatin and Etoposide and lungs were mostly clear. I did develop pneumonitis and was on high doses of steroids for 4 months. Fast forward. In November of 2023 my first brain met appearecd. I've had 5 in total. 3 SRS procedures, 2 resections. April of 2024 I had my first seizure and am now on anti seizure meds and another round of Chemo with Irenotecan. My oncologist predicts I'll be on it for 1-2 years. Is anyone else being treated with Irenotecan? Looking at statistics it seems I should already have made my final journey, but I actually think I'm doing pretty well. MRI in December showed a tiny 4 mm mass that they couldn't identify. :Post MRI PET scan showed nothing.
My hair is a nightmare! It looks like I have the mange. I did the bald with the Cisplatin and don't want to go that route again. Hats are my friend now. Wigs are most uncomfortable.
Would love to connect with someone walking a similar road.
Mira
Hi Mirabo
a warm welcome to the group. So sorry to hear about all that you are going through.
Irenotecan is not a drug I am familiar with personally. I did find some generic information on the website that might help you- Irinotecan | Macmillan Cancer Support
This is a safe and supportive space so I am hopeful that some of the other members will have relevant personal experience to share with you.
Please reach out here anytime as there's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a hug virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
