Feel like it never ending

PeterG2,

I'm really sorry to hear this. Thanks for sharing your experience. It is definitely legitimate to express yourself about this: it's very welcome here on this forum.

I'm also Stage 4. It's been a year since my diagnosis. I was first diagnosed with Stage 3 in Nov 2019. I'm a year into Ipi/Nivo + then just Nivo.  Although as far as I know my tumours are stable for now, my consultant mentioned that in the event of tumour growth in a lymph node, they would indeed want to remove the lymph node if it was in a place they could get to. I hope this happens for you. Keep us updated.

Dots

I feel like this and I have ony had a diagnosis since February...

Hi PeterG2 

Feel free to moan, I feel like that’s my middle name - this whole thing is so “up and down” isn’t it. I had 3 treatments of Ipi/Nivo last year but it had to be stopped due to side effects (deranged liver function and neuropathy) So I’ve been on targeted tablets Enco/Bini since and have just heard that my latest scan was stable, 3rd in a row.  So yes, there are other options which may or not include lymph node removal, depends on your individual case. Wishing you good luck with your next steps x

Hi there. I’m so sorry you’re going through this. I have ALM, since 2022.  It spread to my right groin lymph nodes too. 2023, I had 21 deep nodes removed. 8 weeks ago, after scan showed positive in superficial lymph nodes & had the remaining 11 nodes removed.  I was thinking “ok melanoma, I’ve taken away all your lymph nodes to spread to”. This week, scan shows metastasis to lung, abdominal wall & intestines.  Now at stage 4 too. 
the surgeries to remove all those nodes weren’t easy recoveries. I took a whole 6 weeks both times. 
I hope great success for you!! Keep us posted. 

Nothing wrong with a good moan every now and then, I think it’s healthy to let it out and was one of the reasons I joined this community (today!), so I was able to be honest. My stage 1b was 6 years ago and after thinking I was fine and just need to get the odd bit zapped off my skin every year, was diagnosed as Stage 4 in March this year. I’m on immunotherapy and apart from the fatigue, which I was experiencing anyway, seem to be boxing on. It’s the uncertainty that does my head in. I’m fine most of the time, a great one for seeing the silver lining but every now and then it hits me that my life has irrevocably changed. Good health back at you