Immunology

Hi Firstly sorry to hear your melanoma has come back. I thought all medical issues were going ahead this time and not being cancelled.

Thats what they tell you in the papers anyway. If you read my profile it will explain more about my journey with melanoma. It does need updating  which I will do soon. I have had melanoma in lungs, near spine and also a large tumour near my kidney. The original site was n my thigh overten years ago. About 3 years ago I became ill and found it had spread. I took the dam tram tablets for 7 months then the tumours started to grow again. I then had 4 treatments with ipi and Nivolumab and now I am on my third year of Nivolumab.

My side effects were worse with the two treatments but not unbearable. I developed vitiligo on my arms and some on my chest. It hasn’t gone away but I have got used to it. I had a slight itchy rash and joint pain and was tired for a few days after the infusion. Now on Nivolumab i have less symptoms and only only tired after the treatment and maybe the next day. 

However it hasn’t all been easy and I have had times when I did feel low and thought why me !  However I know I am lucky that I have responded to the treatment  I feel also lucky I have a very supportive husband who until recently came with me for every hospital visit. 

Regarding tips. Main thing is to acknowledge it is a big thing we are going through but it is important to try to make the most of each day. I try to keep active walking everyday ,even in the light rain. I recently have taken up yoga, even though I fall about and am not very graceful. I also until COVID meet up with friends and try not to bore them with my illness. They are there to listen if I need to unload. 

I tried a councilling but it wasn’t for me. I did initially go to my local cancer care for massage and found that relaxing. I was given steroid cream and antihistamine for my rash but after a while didn’t need to use it. 

A month ago I was initially given a complete response but then was told that on the pet scan they saw something near my kidney so am on Nivolumab for another year. I hope this helps and I wish you well. aAlso people on this site has helped me over the years. 

Thank you so much for answering. It’s been so lonely and frustrating going through this. 

I have found care to be compromised due to covid not due to the staff. Got a call today to say the breast cancer clinic was cancelled but a referral was in and then another call to say my thyroid consultation had been cancelled. But I’m struggling with sweats and hormone problems. 

it’s very frustrating. I got side effects of upset stomach, exhaustion and rash. But they come in waves. 

will try and make more effort to get out. I tried counselling but felt I as wallowing and don’t want that. Got another 11sessions to go. Hard with a 5year old 

hope you keep well soon. It’s so hard. Glad I found this group xx

My friend had a appointment at breast clinic today and when she got there it was cancelled. She was looking cal but some women had travelled 40 miles . Yes it’s had but the results of the treatments today are amazing. My initial melanoma was misdiagnosed by my doctor and I had a lot of anger issues to content with regarding him. I had to let it go for the sake of my health and concentrate on getting well I started to eat better especially more fruit . I know it must be hard with a five year old. At 5he time I was a reception teacher so know how hard it can be. Are you having Nivolumab? You say 11 sessions are they every month or two weekly ? 

Hi 

it’s every 4 weeks I get the the treatment it’s the nivolumab. They are also trying to test genetics as well to see if there is a faulty gene as I have a lot of different cancers in my family. X