Stage 4 advanced melanoma positive … kind of

Hi Tipps

Sorry to hear you are waiting to know how things are in your spleen.i don’t have any experience similar to report but know how waiting can be worrying & frustrating. You don’t say whether you are in discomfort or pain so I hope you are not.

i was encouraged to hear how you had responded so well to treatment the November scan - must have felt brilliant. It remains a possibility that it is scar tissue I will keep fingers crossed for you. Please post when you know a bit more. 

I picked up on your post as I am also stage 4 with metastasis spreading from melanoma. I am amazed that treatment has halted its progression in me - magic pills.  I know it may be temporary but a reprieve for now. 

i wish you all the best, stay strong. 
X

Hi sorry your stage 4 I'm stage 3 and I'm too on d and t. How are you doing for side affects.

Hi Tipps

So sorry to hear what you're going through. A kind of similar thing happened to my mum recently. She was told she'd had a good initial response to Ipi/Nivo then four days later her oncologist said that there was a new tumour in her brain. Because it was a Friday, my poor mum spent three days in complete distress only to find out on the Monday that they'd made a mistake. Now, they're saying it's almost certainly treatment related, not progression, so hopefully you'll find out that yours is just scar tissue and not a recurrence.

I don't know how quickly Ipi/Nivo can stop working but when I've been researching and reading other people's stories, it seems like many patients go years before it progresses again, especially after a complete response. I really hope you get good news and I'll be crossing my fingers for you.

Pip x