Recurring melanoma and immunotherapy

Hi Laura

Immunotherapy stimulates your immune system to attack the melanoma cells. In some people it does not work. In some it works but doesn't get rid of all the melanoma cells. Some people are complete responders with all detectable tumours destroyed.

The most common side effects are caused by the person's over-stimulated immune system attacking their normal cells.

I had immunotherapy four years ago. I was a complete responder (good) but as well as as a temporary rash, diarrhoea and fatigue, I ended up with one of the rarer side effects - my anterior pituitary gland was destroyed (less good). Even so, it was a great outcome.

Currently, they are likely to offer you one of two types of immunotherapy.

1. The Ipi/Nivo combination

Four doses, once every three weeks, of both Ipi and Nivo followed by two years of Nivo at either two-week or four-week intervals. You usually have to give up most of a day but the key part is sitting in a chair and getting an infusion, which takes about 90 minutes.

2. Pembro (which is Nivo from a different manufacturer

Two years' worth of infusions at two or four-week intervals.

Ipi/Nivo has a better chance of working that Pembro, but higher chances of side effects.

I was much less stressed once I had met my oncologist and my Specialist Cancer Nurse.

I hope this helps.

All the best

Thank you, it does help a lot. I need to try to plan it out in my head to manage it, if that makes sense. I’ve has the same SCN since initial diagnosis and have her number on hand do I’m glad I have that support and my consultant is really good (if a little crazy) 

I’m so glad therapy worked relatively well for you. Do you have to take medication for the side effects still? 

Laura x

Hi Laura

Yes, I take replacement thyroxine (levothyroxine) and replacement cortisol (prednisolone). I was unlucky with my side effect. Only one in a hundred treated end up with the pituitary gland affected.

Most side effects are temporary.

On the other hand, I was super-lucky with the effect on my melanoma. At the time, only Ipi was available and, on its own, it only had a 15% response rate (it is much higher when combined with Nivo but Nivo was not available then). Not only was I in the 15% but I have been NED (No Evidence of Disease) for three and a half years now.

Hi Laura() I’m sorry that you find yourself back here again, but great you were vigilant enough to find things. I’m on Immunotherapy Pembrolizumab at the moment so I thought I’d say hello again. Like Moira I’m no measurable disease at the moment although unlike her my melanoma came back in a lymph node a year after being a complete responder and stopping treatment. When I had a spread to my ovary in 2016 I didn’t have surgery I was started on immunotherapy Pembrolizumab so I was thinking after your pet scan they will have a multidisciplinary team meeting and the oncologists and surgeons will discuss what’s next for you, so you may want to ask what there thoughts are on surgery and immunotherapy asking them the pros and cons of each option. 

There are some videos on you tube from the melanoma patient conference about immunotherapy and side effects if you are interested I can put some links in if you haven’t already found them. 

Thank you for all your replies. I had my PET scan today and the results should be back around wed/Thursday and I’ll see my consultant to sort out a plan after that. I just want them to do something now. 

Hi , I can understand that need to just get on with things, awaiting treatment makes every day seem longer than they seem when treatment has started.