Upgraded to Stage IV
Some background: I’m 37M and had a WLE to remove a nodular melanoma on my upper right arm back in March 2025 (10mm breslow; 11/mm2 mitotic rate; ulcerated, BRAF-negative, NRAS-positive). Started on Pembrolizumab (Keytruda) the next month. Full axillary clearance to remove all lymph nodes in my right armpit in May, two of which came back positive. Had a local recurrence while on treatment and another excision to remove that tumour in December.
I just finished my treatment last month and had an end-of-treatment PET scan… all was looking good on my previous scans but I ran out of luck this time… I now have multiple tumours on my lungs including a 25mm one on my upper right lung and two 15mm guys in lower lobes on either side, plus several smaller ones scattered around. But the real kicker is a very active and aggressive tumour on my liver (SUV 10.3) which seems to be a tricky place to treat.
Oncologist seems extremely pessimistic and has said that treatment options are limited to ipilimumab on its own (not the ipi/nivo combo) and that surgery isn’t a possibility. He basically said that given how things have progressed while on first line treatment, the chances of ipi working are slim. I feel like he has pretty much given up on me.
I am trying not to lose hope but it is hard. I have reached out to some other doctors across Europe about clinical trials for TIL etc. that I might be eligible for. If anyone knows of centres currently enrolling I’d really appreciate any info at all. Or if you’ve done something similar, how you went about it. I am based in Ireland.
Thanks 🫶