Treatment and surgery changes

Hi,

I had the Ipilimumab/Nivolumab treatment back in late 2021, as my original scalp melanoma had metastasised to my liver and lungs.  It consisted of four rounds of combined therapy, followed (after a six-week gap) by four-weekly rounds of Nivolumab. The overall treatment period with drugs is 24 months.

I'm certainly not an expert, however I believe the two drugs target different proteins which enable your immune system to more effectively target cancer cells.

As with all immunotherapies, there's a fairly significant list of potential side effects, and I know from this forum that some people struggle more than others coping with the side-effects of the drugs.

From a personal point of view, however, the side effects have been manageable (I now take low-dose steroids as my adrenal glands have stopped working, but that really isn't too much of an issue as long as you remember to take the steroids regularly), and the drugs have resulted in the cancer now being undetectable by CT scan in both my liver and lungs.

There's lots of information on the Macmillan website, together with Cancer Research UK and Melanoma Focus.

All the best and if you need any additional information please let me know.

Thanks for the response Emo.

sorry for my own long response but it helps to put my wife’s situation out there but your experience gives so much hope

My wife was diagnosed with stage 4 melanoma las January with the disease metasticising in her lungs, lymph nodes and also her brain where she had to ours around her ventricles as well as two lesions on her frontal lobe. At that time I feared she would not survive but the team put her on Dab/Trem which had a remarkable effect throughout most of last year pushing the cancer back and reducing her tumours to ‘residual abnormality’. All without any significant side effect. We were so lucky. 
A scan in October (results end November) evidenced a return of two tumours in her brain. There were also signs in one lung which were masked by my wife having picked up pneumonia for which she has been hospitalised twice (as if she wasn’t suffering enough)

initially we were told radiotherapy was the next stage but having time to discuss the MDT (multi disciplinary team) decided to put her urgently onto immunotherapy (IPi/Nivo). As with you Emo, she will be taking this initially over 4 cycles over 12 weeks followed by the 6 week break and then moving to Nivo every 4 weeks for the duration which I understand is 2 years.

We were advised at the outset about the potential side effects and 1 doctors response made us fear the treatment would not work. Talk about feeling without hope and helpless.

she has now had 2 courses and so far so good in terms of side effects (some muscle ache and dry mouth but not significant). After the 1st we saw another member of the team who was so much more positive without ignoring the reality of where we are. My wife has her 1st scan between doses 3and 4 so we will learn how effective the treatment has been then.

i Guess  in a rather long winded way I’m saying for you Sue58 is have faith in the advice and treatment. There are many stories of individua experience on the forum. I have found that by reading through these it gives me a knowledge of what to look out for in terms of side effects as well as comfort in the success stories. Never hesitate in calling the immunotherapy (blue card) or rapid response (red card) teams. They are there to help.

I wish you well Sue and continued stability Emo. 

we may be a little ahead of yo in your treatment but if you ever want to reach out for support, I’m here

Thank for this information 

Thank for this information and giving me confidence in this treatment