Diagnosed in October

Hi,

I recently got diagnosed in October with metastatic melanoma that had spread to my lymph nodes, lungs & brain. Shock was unbelievable and unexpected as my original melanoma was caught early and with my lack of knowledge of melanoma did not know how aggressive it could be? I have been told it is incurable but I intend to fight it all the way. I am on dabrafenib and seem to be coping well with not too many side effects. I have a scan next month to see how well it is working. I was first diagnosed 18 months ago with maligment melanoma but have had a long struggle with the system due to lengthy delays with treatment and feel very let down as my situation may or may not have been different. Just wondered if there was anyone else on here with melanoma please?

  • Hi there, welcome to the forum. First of all, I don't have melanoma, but I have other cancers, however, I wanted to welcome you, and also to bump your post back to the first page where hopefully, someone with melanoma will see it more easily and respond. I think having a diagnosis of cancer in any form, is quite a shock to all of us and its' only then that we realize how complicated this disease is, not to mention the different treatments given for it. You sound determined to fight it and that shows *** on your part, so keep up the fight and whenever you have questions about your treatment, or about delays, get on that phone and ask them why and what is going on.

    Keep posting on here and even though someone with your kind of cancer may not respond for some reason or another, all of us here are dealing with cancer; either our own, or that of a loved one with it. You will find that people on here are very caring and supportive, so keep in touch and let us know how you get on with your treatment.

    Take care.

    Lorraine

  • Thank you so much Lorraine,

    It was a very lonely feeling and I really appreciate your reply . Joining here, whilst I read  we are all going through different cancers and different treatments the emotional and supportive side is all the same and hopefully I too will eventually hear from someone who has melanoma. 

    Take care too yvette x

  • Hi Trulyangels, new to the site I've just searched in chat dabrafenib and here I am. I was diagnosed in July/ August 2015 with metestatic melanoma, Unknown primary, (oh and told I was also stage 2 diabetic) a bit of a shock all round really. I started Dabrafenib in August, in this month I've had a 2 day break and a reduction in dosage, as my shoulder is hurting. Consultant says because by scans have been great it is not expected to be a spread but possible side effects hence the reduction. If I hadn't been on the Macmillan site to see that some others who have been on Dabrafenib for 2 to 3 years had had breaks it would have scared me. So I'm plodding on, going about and enjoying the scenery, arranged to get my pension early because of my diagnosis, currently avoiding driving as much as I can because of my shoulder. The 2 day break miraculously made 2 tags that had come up on my neck disappear, and they had annoyed me since September. 

    I hope everything is ok still with you, it's a bit of a worry sometimes wondering how long the Dabrafenib will continue to keep working