Melanoma

Hi 

I am so sorry to hear about your diagnosis but welcome to the community. This is a place where you can share experiences and hear from people who’ve been where you are now. 

The best place to find the folks who can answer your question is in the melanoma group: 

https://community.macmillan.org.uk/cancer_types/melanoma/

Click on the link, follow the tabs to join and start a new discussion. I think you’ll find plenty of info over there. 

It really helps if you can fill in your profile with some information about yourself and your diagnosis. 

Good luck! 

Xx

Hi , welcome to the online community, you are in the right place for a little direction to a group that can help. I’m a metastatic melanoma patient on immunotherapy treatment Pembrolizumab, so I can tell you about my experience and there are others in the melanoma group on ipilumamab and Nivolumab who can give you there experience if you want to click on the link for the group below 

https://community.macmillan.org.uk/cancer_types/melanoma/discussions

If I can be of any help with my experience or links to any information I’m pleased to help. 

You ask what it entails, I have a blood test every 3 weeks and see a dr every 6 weeks for the purpose of authorising my treatment two days later. I go to a day unit or chemo suite right by oncology every 3 weeks, my treatment is only for 30 mins but with putting a cannula in my arm, and having saline in before and after the drug I’m there for about 1 hr minimum to 2 hours maximum. The delay might be because of a knock on effect of where I’m to sit, or the busyness of the unit, or trouble getting my cannula in. I try and make sure I’m well hydrated when I get there, and they always offer a drink of water. They usually have some volunteers to make tea and coffee and if you bring someone with you they can do that for the both of you. The people having chemo can be in there for many hours so we are very lucky. My husband comes with me as I do not want to drive back, but he disappears for the cannula bit and gets me a paper to read for the rest of the time. The first time I was given tablets in case I had diarrhoea, but it’s not something I’ve had, basically as it works on your immune system the side effects are related to your immune system over reacting, I had a rash an all over body rash two weeks after the first dose which took away every freckle but there is a 24/7 number to ring which was very supportive and advised antihistamine tablets and I had a one week delay with the second treatment and no further problems except for being at half speed for a few days.

You might find this video helpful, from the Lancashire Hospital nurses talking about immunotherapy and side effects, and a link to the different treatments.

https://melanomafocus.com/information-portal/immunotherapy-video/

https://www.cancerresearchuk.org/about-cancer/melanoma/treatment/advanced-treatment/biological-therapy/drugs

Best wishes for your meeting and treatment and I hope to see you over in the melanoma group.