It’s spread to my lymph nodes

Hi Amccl, I’m really sorry that today has been so tough for you, I am not surprised that your head is spinning. 

A few years ago there was no adjuvant treatment and so after melanoma was found in the lymph nodes that had been removed, people were just monitored by scans and only treated if something showed up on the scans. Now people can have targeted therapy or immunotherapy for a year to help mop up any stray bits of melanoma that there may be that are too small to identify on a scan. The treatment generally for stage 4 is the same, targeted therapy and or immunotherapy but is not limited to the one year, but some people might be offered surgery or radiotherapy if there is a specific area that it’s felt that would best be treated that way.

Targeted therapy is only available for those that are BRAF positive as that is what it targets. Immunotherapy at the moment could be Ipilumamab (which is only 4 doses), Ipilumamab with Nivolumab, or Nivolumab on its own or Pembrolizumab on its own. 

Scans are done before there is a change in treatment as they have to have a base line and then scan regularly to see if the treatment is working. 

My lymph nodes could not be removed by surgery on diagnosis as too many were affected, Ive had the targeted therapy Dabrafenib for 9 months, and then went onto Pembrolizumab. I’m having a discussion on Wednesday to discuss what the next plan will be as after #55 of Pembro I’m having mixed results on the scans. 

The earlier things are caught and treatment starts the better. If you have any questions about the treatment I’ve had just ask away. Please remember everyone’s treatment journey is a bit different because of the location and the number of places that melanoma may be found, and how long ago that was as treatment has been changing for melanoma. I’ve been both incredibly lucky and had bad luck in my melanoma history (trying hard not to say journey !).

Thank you so much for this advice and your knowledge xx Explained the situation today to my two sons in the simplest terms possible so today has been a tough old day! X 

That can be a hard discussion and you might swing from being really positive as that’s how you might put it over to people to then over thinking the what ifs. I think it’s good to remember that right now they’ve taken all the cancer they could away and that the scan will be a positive thing even if they find something because it means things can start to move forward and cope with this thing, that’s how I have to look at things at the moment. There are Macmillan booklets on talking to children, and you are right to keep things simple and get them to continue sun safety habits as well. I’ve put the link to the booklet which I think is also a down load in case it’s helpful.

https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/talking-to-children-and-teenagers-when-an-adult-has-cancer

Replying keeps my mind a little bit of me so I’m glad to help but might make my own post soon, just not sure what to put at the moment. 

You are such a help to me thank you so much!  Hopefully I will be scanned next week and I am assuming I am Braf positive then if the surgeon mentioned the adjuvant treatment ? 
I have never met with a cancer nurse etc only saw the dermatologist twice and the surgeon that performed my operations x 

Thinking of you @Amccl and sending you a big virtual hug. 

@KTatHome, I hate the term "journey" too, though before my own cancer diagnosis I used to think it was a noble and spiritial way of describing it, as if cancer patients were on some sort of Odyssey. The truth is that it is a detour I never wanted to take, nor would wish on anyone else. 

Take care

Miranda

Thank you , the word journey it’s not for me either x

Hi Amccl, adjuvant just means a preventative treatment, so BRAF + can get targeted therapy (the various tablet options) or immunotherapy, BRAF Wild I think it’s called or negative can’t have treatment to target the BRAF gene as they don’t have it, the immunotherapy drugs targets other proteins in the cancer like PD1, aren’t scientists clever, I better shut up while I’m ahead. 

Amccl I'm so so sorry today brought difficult news for you. I was keeping everything crossed that you'd be clear and thinking of you all day. I can't offer advice as I'm a few steps behind you on this crappy pathway but you can do this, I've got your back! We're all here to support you as best we can. Sending big hugs xx

Thank you my friend , today is a new day and feeling so much better after a nights sleep. Going away for a few days break with my family so thats just what I need x 

Have a great time away, relax a bit and put your feet up. X