Hi I’m newly diagnosed and saw the oncologist last week. I’ve been offered this trial. I’m waiting to speak to  a research  nurse. Have you made any decisions about this at all? I’m very undecided. 

Hi

i I decided against it for a number of reasons once I’d had my meeting. Firstly it would have delayed the start of my treatment for a minimum of another month and I was told that when the prembolizumab was added in with chemo & radiotherapy from day 1 there had been some nasty radiotherapy burns. Only 5 people were on the trial & 3 hadn’t been able to complete due to this. I also thought that if my standard treatment is only 5.5 weeks why did I need to put myself though 6 months of extra treatment. Obviously it’s your decision I just didn’t feel it was right for me. I was diagnosed on 13/9 & only start my treatment in the 18/11 so I didn’t want delay it anymore. 
hope you’re doing ok. I’m finding the waiting to get started the hardest x

Hi thank you for replying. I’m finding it difficult getting information. Even the research nurse who called me today was quite vague about the trial. I asked about people currently receiving it and she said she couldn’t discuss it. When I first read about the trial I thought I would take everything on offer but now I’m probably going to turn it down. The side effects of the regular treatment are going to be enough to cope with. 
I don’t have a planning appointment through yet and just want to get started. Like you I don’t want to delay any more than necessary. 
Good luck with your treatment!

Hi thank you for replying. I’m finding it difficult getting information. Even the research nurse who called me today was quite vague about the trial. I asked about people currently receiving it and she said she couldn’t discuss it. When I first read about the trial I thought I would take everything on offer but now I’m probably going to turn it down. The side effects of the regular treatment are going to be enough to cope with. 
I don’t have a planning appointment through yet and just want to get started. Like you I don’t want to delay any more than necessary. 
Good luck with your treatment!

Thank you. Yes there’s very little info out there on it. Once I’d had my radiotherapy planning scan they said it would be 2 weeks then to start treatment. 
keep in touch let me know how you’re getting on x

Hi

Well in the end I did in fact decide to go ahead with the Corinth trial! After weighing it up and discussing it with the oncologist I decided yes. At any time I can stop it if there are side effects, so I will be starting treatment next week.

i had to go for my radiotherapy planning scan three times. First two times my bladder was too small. I hope your treatment is going well? 
x

Hi 

Thanks for posting again I was wondering how you were doing. I think that’s a great way to look at it  I’m doing ok I’m on day 18 of 28 now.  I’m doing better than I expected I’m quite tender between my legs now  lots of swelling but I’ve been given 2 types of gels and pain.  I have to drink 600ml of water before each radiotherapy so my bladder is the same size for each treatment. The chemo hasn’t been too bad at all. 
I hope everything goes well for you. Keep  in touch and let me know how you are getting on. 
take care x

I’m on Pembrolizumab for melanoma. When I was first offered this treatment and given the most horrendous list of awful side effects, I made my mind up within minutes that zi wasn’t going to take it. I was so delighted when I’d made the decision but a few days later my Gp rang to see how I was getting on. When I told him about my decision to refuse the treatment, I knew instantly by his tome of voice that he was horrified. Anyway, I listened to his take on things and did a complete about turn!!  I’ve had 2 treatments with no dreadful or horrendous side effects. I did gave a rash across my back and chest but was given a wonderful cream and strong antihistamines to take daily. My life hasn’t altered in any way. I’m as fit as a fiddle. I dud hear from a man whose wife had had chemo etc., for either lung or bowel cancer which hadn’t been successful. Apparently she was only able to have 3 treatments of immunotherapy BUT the treatment kept working and her tumours shrunk completely. What a fantastic result. 
if you are good enough health you should be absolutely fine hopefully. I met a lady on my first visit for treatment who was having her final one and also had little or no side effects that caused her concern. 
I’m convinced that immunotherapy is the new and best treatment available for many cancers. 
I hope this helps you in some way to make up your mind. 
All good wishes to you. 

That is such a positive experience. Thank you for posting. My oncologist said she has to tell patients about the very worst case side effects. You are right reading all the side effects would put anyone off. Any medication, even paracetamol for a headache has side effects, it doesn’t mean everyone will get them. 
I start my treatment and immunotherapy tomorrow. Fingers crossed for a positive experience x

How did you get on with your treatment?  I’m hoping all is well. At least I sincerely hope it is. 
I’ve had 3 treatments and due my 4th on 14 th February. We have been in Spain relaxing for the last 3 weeks and heading home tomorrow week in time to get bloods done and attend the hospital. I refuse to think that there’s anything wrong with me. I’m in great health and enjoy every minute of every day. In actual fact, there isn’t anything wrong with me since the plastic surgeon removed the cancerous lymph node. I intend to stsy this way!!!

Hi

really happy to hear you’re doing so well. 
the chemo was ok but the last 2 weeks of radiotherapy gave me awful radiation burns which got worse for a week after the treatment finished. That was 4 weeks ago & im feeling much better x

Hi Calia,

You are being so brave and positive and that’s what you need to be. You faced the music head on, had side effects and now over them. Well done. Cancer is the one word that always put the fear of God into me but weirdly, with the help of God I have done remarkably well.  I think it’s the fear of the unknown but when you think about it, every day if our lives is the unknown and we don’t think a thing of it. Dsy and daily I read about or hear about many people who had cancer and are now in remission so I must conclude that these treatments are finally making an enormous difference to cancer patients lives. Not the easiest thing to go through but with the help and guidance of the doctors and nurses we are reaching the finishing line and winning the battle. Keep going. Fight the fight and put this all behind you once it’s over. I send my very best wishes to you. Please keep in touch. Xx

Thank you Grannyrose - yes that’s very true. I hope you continue to do well too. I’m at the hospital again on Thursday for a follow up. Hoping they can give me something for the burning feeling in my feet. I think it might be chemo induced neuropathy. Hope I’m wrong! 
Take care xx

Remind me, did you agree to do the Trial or did you accept the treatment that had been offered to you?  I’m thinking you refused the Trial. 
Time to get up now. X