Stage 4 melanoma lung & brain mets

Hi Allyona,

So sorry to hear your news. My mum had a similar shock last autumn when she suddenly progressed to stage four with mets literally everywhere. The odds had been on her side the whole time and she's braf negative like you - it all felt like it never should have happened. Her mole was caught early too and less than 1mm. Just terrible luck.

She's had all four ipi nivos and they worked really well for her, even though adjuvant treatment hadn't previously worked. Last two scans have shown that the cancer is shrinking all over, even her brain mets. Her next scan is in a fortnight and we're all feeling very nervous as usual, but she seems pretty well right now - she doesn't have any of the symptoms from  last year apart from a very mild cough - so we're hoping the good news continues.

It's such a difficult time, but treatments for stage 4 are progressing at a phenomenal pace and there are more success stories every year.

Take care,

Pip x

Hi Pip

thanks so much for your reply just read through your profile your Mum has been through so much she obviously is a very strong lady with a wonderful family behind her. I hope she continues to improve & prosper

my melanoma is nodular & very aggressive may I ask what type of melanoma your mum has?

, 
You have given me so much hope .. my oncologist has told me if I don’t respond to ipi/nivo I’ll be in a very serious situation. Being braf negative targeted therapy isn’t an option for me & chemo does not work for melanoma.. I have so many tumors in 4 different areas that radiation isn’t an option either …

tbh I can’t see past August at the moment he told us we need to weather the storm for 3 months have 4 IPi/nivo treatments & then he will arrange another ct & mri brain & hopefully we will some improvment no matter how small it will show I’m reaponding

I’m only 45 with two children 12 & 13

Thanking you for taking the time to respond x

Hi,

I was stage 2b when diagnosed no lymph node involvement and ct scans clear. 12 months later I had mets in lungs and a small met near original site. I’ve had 8 rounds on immunotherapy (Nivolumab) and ct scans at 3 & 6 months show everything is shrinking, I pray it continues. My melanoma was nodular but I am Braf positive.

It’s not an easy journey but try and stay positive, feel free to ask me any questions if I can help.

Hi Allyona,

I'm so glad my mum's story has given you hope. She's amazingly strong, although she definitely has times when all this really gets to her. My mum's melanoma is cutaneous, so not nodular, but it's true that there are less options if the ipi/nivo stops working.

I can completely understand why you're struggling to see past August right now - we were the same with Christmas and tried to just enjoy each day at a time as much as we could.

Has your oncologist said that chemo doesn't work? I'm not a medical person, but I've read that it does work in a small number of cases or can slow things down a bit, it's just less effective than immunotherapy. If you're feeling up to it, there are a lot of different clinical trials available to look at on Cancer Research and a great website called Melanoma Focus. I brought up one with my mum's oncologist back in November as a potential plan B if Ipi/Nivo didn't work, and she was really receptive. She encouraged us to keep an eye out, even though Mum wasn't eligible for some trials because of the brain mets. In particular, there is a new type of treatment called TIL therapy which is really promising for patients with less treatment options. It's still in the trial stage but getting quite close to becoming available, I think.

45 is so young to be dealing with this. My mum is 57. Thinking of you and your family x

Hi Allyona,

I'm so glad you're getting Ipi/Nivo. It's a a great, great option. It doesn't work for everyone, but it does work for a majority - I think I hear 60% of people? After I started Ipi/Nivo, the next milestone was the first scan after the Ipi/Nivo. They did that scan for me 2-3 months after I started Ipi/Nivo. Although not everyone has side effects, I had some bad side effects after the 2nd dose (easily sorted out by steroids) so they wanted to stop the Ipi/Nivo and move me onto single dose Nivo, so they scanned me to see if that was the right move, and luckily the scans showed that I responded to the Ipi/Nivo enough, so they could stop it and move onto the single Nivo (otherwise the side effects would have been dangerous). I found that my first dose of Ipi/Nivo was tolerable - I just felt a bit tired. Hopefully you're doing well. 

Dots x

Hi Allyona, 

Sorry to hear about your recent diagnosis. I can bring good news to you though. 
My partner (39) was in a similar situation last year. He was under surveillance for almost 5 years from a primary mole cut out of his leg in 2017. Melanoma was then detected in his lymph nodes in May 2022 and we were told he needed surgery to remove it. 2 x brain MRI's were all clear in Aug 22 and Nov 22. We eventually got the lymph node removal surgery in Feb 2023 (waited 8 months) however when he came home from the operation, he became extremely unwell with headaches and vomiting. Repeat brain MRI showed 4 x brain mets - they weren't there 3 months ago! 

He was started on Ipi/Nivo quickly and got through 3 rounds before it was stopped due to colitis (bad diahorrea and weight loss). He also had CyberKnife on the brain mets - not sure if this is an option for you? He started on maintenance Nivo and brain scans done after 6 months showed all of the mets had resolved and a 'complete response' to treatment. We are basically living our normal lives and he just has his monthly Nivo which has minimal side effects and 3-monthly scans. He is Braf positive though so we do have targeted therapy as a back-up if needed. 

Hope your first round of ipi/nivo went ok and not having too many side effects. 
Do keep us updated on how you are going.