Good news!!

Thanks very much for sharing your good news with us Alibobs !

Long may you remain NED (no evidence of disease)

x

Really pleased to hear that news. I hope you continue to stay well.

Oh Alibobs that's really fantastic news to hear. I remember you from last year and it's great to hear good success stories.  Celebrate any way you know how hon  

I hope your journey with the ipi or the nivo goes on ok with minimal side effects.  Take care xxx

This is lovely to read I am waiting for staging I have melanoma in my lymph node.  No lesions but had melanoma 13yrs ago very early stages. Hope you continue to stay well. 

So pleased for you! Thankyou for sharing this,  I have just posted regarding starting the double immunotherapy next week, alongside radiotherapy.  Can uou let me know mire about your side effects please? Did you suffer hair loss ? Really concerned about this, as I have low confidence anyway. Grateful for any advice or tips. Xxx

Amazing thanks for sharing, I needed a positive  outcome story right now. I wish you good health

Sorry for my late reply, I hope the start of your treatment has gone well. 

I've only had the double ipi/nivo immunotherapy so don't have any experience of radiotherapy aswell. I haven't experienced any hair loss at all, I don't think that's one of the side effects of immunotherapy as far as I know.

I had really itchy skin and thrush which was hard to get rid of and really not nice. This started a couple of weeks after my first dose and carried on for probably about a month. I had to have two treatments for the thrush for it to clear up and I was given hydrocortisone cream for my skin which did eventually help. I still have patches of itchy skin but I use moisturiser a lot when it flares up as well as the cream that you can just buy from the chemist for when it gets a bit itchy. 

I then developed colitis which started out of the blue the weekend before I was due my 4th dose of treatment, instead of having the treatment I was due on that Monday I ended up spending the day on a drip and having a ct scan which showed the inflammation and so I wasn't allowed the 4th dose and they said it would have made me seriously ill. The colitis was treated with steroids (which actually helped my skin for a while!), I had to have two weeks off work and then I'd say it was a couple of months before I could say my bowel movements we're normal again.

As the scan results were so good I would take those side effects again as they were definitely worth it!! Started my first dose of nivolumab on its own last week so hoping the side effects won't be too bad now.

Hope you get on okay and the treatment does it's job, it seems to be amazing stuff!