Hi everyone
I was diagnosed with invasive melanoma just over a year ago after having a spot removed from my face. Unfortunately it had already spread to my lungs and confirmed as stage 4 just 3 months later. I started on target therapy (Dab /Tram) in March 2021 and my lung mets stabilised and one even reduced. However my scans in July showed lungs stable but 3 small lesions in the brain. I changed treatment to combination immunotherapy (Ipi /Nivo) in August 2021. I also asked about Stereotactic radiotherapy (SRS) and was advised that due to small volume continue with treatment and would review on next scan. I said I was a bit concerned but agreed to keep with immunotherapy. However things did not go to plan. I had 2 combi treatment infusions then treatment suspended for about 2 months due to side effects causing issues with my liver. I have just managed to resume treatment and had my 3rd infusion and my 4th is due in 2 weeks. I was not expecting great news from my scans as I know immunotherapy can take time to work. My recent October scans show lungs stable with response in largest lesion. However brain shows 2 more lesions. I asked for the SRS again and was advised further look at scan actually shows 7 not 2 more small lesions. So now 10 (largest just over 1 cm in size). Said they would now only offer me whole Brain Radiotherapy. I have said I don't want WBRT at this stage in my treatment and I am now awaiting further information. I am hoping for SRS but not sure because of the number of mets whether I can have it on NHS. I may consider having it privately if I can afford it as I really don't want my whole brain radiated at this stage and I want to give the immunotherapy time to work hopefully! I am fit and healthy physically with no symptoms but feel mentally destroyed! My lungs are stable. Its been an ongoing nightmare for me but I am trying to remain focused so I can make my next decisions. I am aware the clock is ticking.
Has anyone had SRS treatment on the NHS before for a number of small brain lesions? Has anyone had experience of WBRT whilst on immunotherapy treatment and side effects?
Has anyone paid privately for SRS treatment in the UK (northwest area) for 10 small brain mets and if so any idea of how much it may cost?
Has anyone had experience of stopping immunotherapy then restarting it and had any response?
Anyone with brain mets who responded to immunotherapy treatment and if so how long after starting treatment?
Any replies would be helpful.
Thanks
Ja13
Hi Ja13 and a very warm welcome to the online community
As the online community is divided up into different support groups I'm going to recommend that you join us over in the melanoma group which is a great place to ask your questions, share experiences and get support.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. To save yourself from typing this all out again just copy and paste it in to your new post.
Although I haven't had to make the same treatment choices as you have I know there are others in the group who have been on immunotherapy and some who have stopped and then restarted. I'm sure they'll be happy to share their experiences with you.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
