Stage 4 brain mets

Oh jane - I’m so sorry to hear this. Don’t google - speak to your cancer nurses. When you had your mole removed did they not do a SLNB on you? I’ve read lots of positive posts on here from people with stage 4, and hopefully these people can offer you some reassurance. I’ve tried to stop googling now as I get myself so scared when I do. Thinking of you and sending positive thoughts your way xx 

HI Jane, 

I'm really sorry to hear about your story. Melanoma is such a sneaky disease - you think you get it all and then boom, it appears again somewhere else. 
My partner (he's 38) has also been recently diagnosed with 4 x brain mets. They knew it was in his groin lymph nodes last year but it had already gotten to his brain by the time they did the lymph node dissection this Feb. One of them was pretty big (2.5cm) in his cerebellum so he had emergency neurosurgery which went really well but obviously was terrifying as it all happened so suddenly. 
One big thing I've learnt that the internet is not your friend when it comes to melanoma and brain mets. A lot of the statistics and prognosis out there are pre-immunotherapy/SRS days which has really changed the game. Honestly, stop Googling things and just focus on yourself and keeping your mind in a positive place. 
My partner had his SRS CyberKnife (is that what you're having too?) 2 months ago and is having his 4th cycle  of immunotherapy soon. I expect this is what you'll be offered as well. He's feeling really good and hasn't had many side effects or headaches so we're feeling confident that the brain mets have been shot down by the CyberKnife and the immunotherapy will keep them at bay. 
I work in a big London cancer hospital & have come across people who having been living with melanoma brain mets for 10 years +. There is also another great forum which has a lot of people with brain met success stories (https://forum.melanoma.org/forums/topic/brain-mets-success-stories/). One lady is NED after 19 years. 
We have his repeat brain scan in a few weeks which is definitely going to be a stressful time but I know how amazing all this treatment is so you just have to believe it will work for you too. It sounds like your mets were caught early, especially if you weren't having any symptoms. So this is a positive thing! 

Hope this is somewhat helpful in a very scary and uncertain time. Let me know if you have any questions, I've learnt a lot about all this in the last few months!
Stay strong xx

Hi , yes they did an slnb and removed 3, talked about offering targeted therapy then but didn't. 5 months later, found another swollen, sore lymph node so they did a total clearance, out of 25, 15 had cancer,  started dabrafenib and trametinib soon after. I have read some positive stories on here. I do need to stop googling!

Keep focusing on the positive stories .. that’s what I’m trying to do. Easier said than done I know xx 

Thankyou so much for replying, makes me feel much better. So glad your husband seems to be responding, I am starting exactly the same in a few days time. I will have a look at the website you have sugested too. If I think of anything, I Hope you doing mind if I come back to you. Good luck to your husband and please keep us informed xxx

Hi Jane,

Right after I was diagnosed with Stg 3 melanoma I read the story of the journey of ex-US President Jimmy Carter. In 2015 he was diagnosed with melanoma on his liver with mets to his brain. He received targeted radiation and four doses of Pembro (Keytruda). His was one of the first approved uses of Keytruda/immunotherapy and the cancer disappeared completely. Since then there have been many documented successes. I certainly do not advocate researching melanoma survival statistics via Google as they are outdated and unnecessarily scary, but the Jimmy Carter story gave me the most encouragement at the time. The immunotherapy was a blessing for me and I have now just begun my third year of being non-detectable/cancer-free.

As a patient at a very busy oncology clinic I can tell you that i have personally found that successful melanoma treatments are not unusual anymore these days.

Wishing you the best with your treatments. Melanoma treatment has advanced by leaps and bounds in the last 10 years or so.

Dave

Xx

Thankyou so much for sharing the positivity. Really wish you the best, do nice to hear good outcomes xx

Hi Jane B,

Sorry to hear your story.  If it helps helps I’m a little way ahead of you on the treatment schedule.  I am 56 and have Stage 4 kidney cancer that spread to my lungs and brain. I was diagnosed in November last year and was quite ill at the time.  I had 3 lots of radiotherapy followed by 4 sessions of Ipilimumab and nivolumab immunotherapy. My latest CT and MRI scans show that the tumours have shrunk so it’s working. I’m about to start the single Nivolumab sessions.  Looking back on my treatment - the radiotherapy was fine, just zone out and think of somewhere nice (the beach for me) Actually getting the mask fitted was probably worse. The double dose immunotherapy also went well, with no major side affects - skin rash mainly. I’m now feeling well enough to go back to work.

Good luck in your treatment, stay positive.