Hello all,
I wanted to share some good news, as I know that when I was in the middle of that chaotic and often desperate journey through diagnosis and treatment, hearing good news stories gave me hope that there was a way through.
To quickly summarise my journey, I had a nodular melanoma removed from my neck in 2015 (initially misdiagnosed by my GP) that then spread to my lymph nodes and then to my lungs.
I’ve had major surgery (left neck clearance and removal of a saliva gland), radiotherapy on my cheek and neck, 2.5 years on targeted therapy went it first spread to my lungs, and then when that stopped working and it came back in my lungs in early 2020, immunotherapy.
I had a strange immunotherapy experience as it started just as the first lockdown began and my dual was converted to single Nivo after one infusion because they didn’t yet understand how COVID could impact it and the risk of hospitalised from side effects when COVID was still without effective treatment.
I tolerated 3 more Nivo treatments until it was stopped due to side effects, and had an anxious wait to see if it continued to work.
The next scan showed an almost complete response and the following one confirmed there was no trace of melanoma remaining. I’ve just had my latest 6 monthly scan results and I’m still clear.
As we’ve reached 3 years since treatment and I’m still showing a complete response, they’re now classifying me as in complete remission. I had that milestone in sight from the start as my consultant had told me the likelihood of recurrence greatly reduced after 3 years.
So - for everyone fighting this thing - I know how dreadful it is. But there is a pathway through it thanks to these miraculous new treatments.
Thankyou very much for this post! My partner (he’s 38) was diagnosed stage IV this March with brain mets that had spread from 1 tiny groin lymph node. It was a massive shock. He’s finished 3 rounds of ipi-nivo & now had 3 rounds of single nivo. First 3-month follow-up scans showed the brain tumours had all shrunk >50% (yay) & nothing new. He’s back at work, going to the gym and basically living an almost normal life. We often forget he has cancer. Next round of scans are booked next week, always a terribly anxious time waiting for results but we have no reason to doubt they’ll come back good. I just keep believing we’ll hear the words ‘complete response’ like you have & he’ll keep on powering on for years to come 
