Bbc news

Hi 

This is probably the Melanoma BBC Immuno News Item you mention ?

The link will save folks having to find it 

G n' J

Hi , and , I didn’t see the news, but I started on immunotherapy (Pembrolizumab) in April 2016. We are very lucky that we have these life changing drugs, but I am looking forward to coming to the end of treatment.

The melanoma patient conference videos have some more info if your interested. https://youtu.be/f1MxlEqTbnE

The above link is to a talk by Dr Pippa Corrie on immunotherapy and side effects, but all the June conference videos are on You Tube and the years before. I think it’s a great conference to go to. 

When I was diagnosed with melanoma that had spread in 2015, what gave me hope when targeted therapy stopped working for me was articles in the paper about the ex US president Jimmy Carter and how he had become a complete responder to Pembrolizumab, so I was pleased when that drug became available on the NHS a few months before I needed it.

I think melanoma isn’t necessarily on people’s radar at all, and that the assumption is that people with cancer are treated with chemo and radiotherapy, so the mention of targeted therapies and immunotherapy seems a bit alien to the majority of people. There isn’t necessarily a knowledge that melanoma can spread from the skin. People do seem surprised when they find out that I am still on treatment especially when I look so well, and updating people after scans should be a celebration but is a bit run of the mill now. 

I did use to find that each time I had to explain what I was going through you had to decide how positive or negative you felt the slant should be. 

I hope your visit to the surgeon goes well, it’s great you have someone going with you.

Hello KT.

Thank you so much  again for your positive and inspirational reply.

I did try and say to folks oh I just have to have a small lump cut out and leave it very casual but because I had my first melanoma only last year they have put two and two together and think the worse. I hope they see the news report and that will help them understand.

As I have to p!an ahead and it's keeping me busy, I went into town this morning and did the charity shops looking for ankle length skirts as I have to wear pressure stockings afterwards, hope they do navy blue ones!!!! 

Off to see a male voice choir tonight and tomorrow am supposed to be singing with my choir for our local marathon runners, our weather forcast is horrendous for tomoz so being sensible I may have to miss the latter, got to stay fit for my op!

Hugs for everyone

Hi , KTatHome and 

Whilst I agree that it's good that people might understand that melanoma is no longer the death sentence that it used to be and it's fantastic that all these new drugs are available now, I must admit that I get sick and tired with people implying 'but you've only had skin cancer' as if because I haven't had chemotherapy and didn't lose my hair I haven't had 'proper' cancer.

One of my friends even asked me how much longer I thought it would be for me to feel confident to sit in the sun again and not be covered up!

Rant over!

Most definitely - you have at least to loose all your hair or have facial surgery or your cancer is invisble to most :-/

Problem is the big difference between BCC and Melanoma. Hands up; I like most others didn't realise the difference until cancer knocked on our door.

G n' J

Yes I think you're probably right  and some people think that having melanoma is perhaps just another name for a BCC. They hear skin cancer and lose interest because they don't think it could be life threatening. Perhaps that's the fault of those of us who have had melanoma in trying to play it down so as not to scare friends and relatives when, perhaps, we should be scaring them because, despite what I've been through, all my friends continue to be sun worshippers while I sit in the shade.

However BCCs can be life changing too, especially if they're in a prominent place like the face. You only need to read a few of the posts in the skin cancer group to realise how upset people diagnosed with them are, and quite rightly so.

x