12 months on Targeted therapy, to be told it's stopped working...next steps immunotherapy

So sorry to hear this SeanH. I can’t give any advice to you as I am just at the start of my journey (stage 3b). I don’t even know yet whether I have the BRAF gene yet. You, as with all of us on this forum have to put your trust in your oncologist, which I know you are. To us it’s new but they see this and a lot worse every day and they know exactly how to progress with treatment. 
it doesn’t stop the anxiety, I know, or the long wait for results. 
I woke up this morning to 4 messages from the Marsden hospital telling me that I have appointments for 2 CT scans on my body and 1 on my Brain, more waiting and wondering - chances are they won’t find a brain, but I don’t want them to find anything else either!!! Good luck 

Hi Sean H, i going through a similar experience. Done a year of targeted therapy, then got told the cancer has returned. I done 15 months of immunotherapy . Then get told again immunotherapy was not working anymore. So I’m now on targeteted again different drugs than the last time. As for side effect of immunotherapy it was just fatigue and had problems with a rash at first but steroids kept that under control. Personally I find targeted harder on me than immunotherapy. Hope this helps. Stay strong

I had side effects with immune thereapy but the risks are worth it I am nearly five years in remission from stage four metastic melonma 

I started ipi/nivo combination 6 days after I was diagnosed with stage 4 mets to brain & lungs & widespread subcutaneous mets.. im braf negative which gave me only 1 option immunotherapy without treatment my lift expectancy was 6 to 8 months..that was may 16th 2024 

6 months later 21st November 2024 I was in complete remission … I met my oncologist again last week and he said my scans are like those of a person who never had cancer 

it’s worth every damn annoying side effect & there are many but don’t suffer as steroids can manage almost all as long as you tell your oncology team as soon as you notice them.

Im now on lifelong hydrocortisone steroid treatment for adrenal insufficiency/ Addison disease as well as ongoing monitoring of pituitary gland which is also damaged 

im still having my maintenance nivo every 2 weeks & will continue to for another 14 months it means I get to live to see my children grow up ️

wishing you all the best xx

What an inspirational story, Allyona.  I’m sure you appreciate life to the full every single day.  

Hi Sean, 

I was on targeted therapy of Dab/Tram for 12 months. I had a stage 3b melanoma but it was totally removed by surgery. The targeted therapy was preventative. However, about 18 months after I stopped the targeted therapy, scans found recurrance: Stage 4a, incurable but not treatable. I'm 2 years into Immunotherapy - some stopping and starting due to a liver problem and then colitis - and my tumours are stable. I had 2 doses of Ipi-Nivo and then moved onto Nivo only. The only side effect I have now really is muscle weakeness and a bit of fatigue. I had a few really bad fevers (rigours/shaking) with the targeted therapy which I think were much, much worse than any Immmuno side effects. 

My oncologist says 'every reason to be positive' and 'the cancer wants to grow and it's now growing'. I'm approaching the end of the recommended 24 doses of Nivo and last week, my consultant said one of my options is that I can come off Nivo at the end and be monitored with scans every 3 months. I find that a positive option (although I think I'll choose to continue my monthly Nivo, which is also an option). I never thought I'd get to this point. She even said that at the end of the 24 months, they may biopsy some of the tumours (all in the lymph nodes) because it's possible that the tumours showing up on the scans are just dead matter: necrotic tissue. 

I think Immunotherapy is great. I hope you get the support you need and wish you very well with your treatment. 

Warm wishes,

Dots

Hi Sean

I have stage 3a melanoma and have been offered targeted therapy but am worried about the side effects for what seems like a small percentage change in the outcome.

Are the side effects as bad as I’m hearing.

any advice would be greatly appreciated.

Thanks in advance