Stage 4 melanoma - nivolumab maintenance dose

Omg I’m shocked to read this no wonder ye are shocked 

I’ve had 4 ipi/NIVO & 5 maintenance nivo to date

my last scan showed no progression but no shrinkage either & my oncologist wasn’t very optimistic about the maintenance NIVO but as I’m braf negative there are no other options available to me besides a trial 

my next scan is next month so fingers crossed

I didn’t ask about a prognosis as such but he did say that 50% of people with stage 4 melanoma mets to brain & lung are alive in 5 years …..

Allyona

Thanks for your reply. My partner has just had one very small brain met, that was caught early, and treated with stereotactic radiotherapy.

His next scans are October, and November for a brain scan, so we are waiting now to see if these remain stable. 

Hopefully the scans will show stability

fingers crossed for you both 

I guess all we can do is hope for the best & make the most of the time we have 

hugs  

Alli x

My husband was told he may have less than 12 months too. Having his second ippi/novo combo next week then scan and see if he will then have maintenance nivo. Staying strong and praying x

Exact same story for my husband - also braf negative.

Pony14

Thanks for your reply, it is such a shock to hear.

My partner is braf positive, and was doing well with the immunotherapy, and there doesn't seem to be any further treatments other than clinical trials left.

Trying to stay strong , and positive but it's been such a rollercoaster

Best wishes to you and your husband, keep strong.

If you find any suitable trials please share and I will do the same… glad I found this group for support. Here if you need a chat x

Thanks

X

I was told by a trial I contacted the best thing to us print off any you find and take them to your oncologist to refer you if you are suitable x

As far as I know if Braf positive targeted therapy should be an option  ?