Starting Immunotherapy 7/2/22

Hi John

Sorry you have had to join this group, though you are most welcome.

What immunotherapy are you having, as there a few different ones,

I had Pembrolizumba and did so for two years.

Every one is different in how it will effect them. I never had any side effects to start of with but was very tired , after a few months a rash all over that was so itchy i scratched so much i i bled , Though was given a cream and after a while every thing was good,

Symptoms do not always start straight away, but build up the more you have,

Hope others pop in and give you some advise as well.

Ellie x

Hi...I started keytruda (pembro) beginning of August and have a double treatment every 6 weeks. I have my 5th one next Friday. So far I've been fine...I get a bit tired on the afternoons but I've always liked a bit of a siesta so don't know if it's just me being lazy or not. I've not had any sickness at all and feel good. If it wasn't for the diagnosis (stage 4 adenocarcinoma) I wouldn't know I was ill. I've started walking 3 to 4 miles a day, drink tons of water and have cut booze out, apart from Saturday nights and special occasions. I've not been told to do any of it but just figure the fitter I am the better I'll be able to fight. Good luck with your first treatment, you're bound to be nervous as it's all so new (I cried all the way through!!). The nurses are great and will help you relax...take a book or download something to watch ...just helps the time go a bit faster xx

Thank you Elsie, hope I react the same. Wishing you Good luck  John xx

Hi Ellie,

I having the same drug, thank you for your help, Wishing you good luck.

1. Hi jhw51 I'm on nivolumab and will have my 20th round on Monday. My side affects are the itch, I use Avino cream for,, also Non biological  soap powder for laundry, Sanex shower gel for sensitive sk. It all helps. Constipation, mouth ulcers. I look and feel well, I also walk and dance. Good diet and exercise. Hope your treatment goes well  

Hi, I know how you feel with starting this treatment. I had my first immunotherapy 2 weeks go. Was fine for the first week or so, then I got shortness of breath so phoned the 24hr/7day number the hospital had given me for people on treatment. They said to go into the clinic, checked me out and have given me steroids which are slowly improving my breathing, but otherwise I am ok. All I would say is if you notice anything different then phone the numbers they give you. it’s always better to phone and ask than to leave it, it’s what they are there for. Hope all goes well with your treatment.

thanks Moi2 

Durdledoor, thanks for the heads up.

I was offered choice of immunotherapy radiotherapy yesterday or to do nothing for 3 months then PET scan again if no change in lung melanoma then treatment or just wait another 3 months. 
I think this is best option. 

If you feel this is right for you jimmycat200, then go for it. I’m sure you will have been given lots of advice from your team & have weighed up your options. Good they are giving you choices.

wishing you all the very best, let us know how you get on