Melanoma that has spread to the lung lymph nodes.

Hello , I am sorry to hear of your recent biopsy results, trying to look on the bright side I’m thinking well done your immune system for keeping everything back for 12 years. It’s very natural to be apprehensive about what happens next, I remember that apprehension, actually I think it was terror the first time in August 2015 starting on Dabrafenib, and I think apprehension but hopefulness in April 2016 starting on Pembrolizumab, as I’d read about Jimmy Carter and his success. In June 2018 back on Pembrolizumab after a break I just had incredible disappointment that melanoma was back and that I’d be on the three weekly regime again but I have my eye on the prize again that in March it may be possible to be back to clear of treatment. 

So I guess I’m saying expect a bit of emotional turmoil if your like me, waiting for treatment to start and that first scan result to check how your getting on. I expect you have your own method of acknowledging but ignoring the what ifs until it’s time to have a little wobble before the results come through.

i am expecting that you will very soon have your team suggesting or recommending a choice of treatments, and you might ask them, why would they recommend one treatment ahead of another for you, and you might want to ask if there are any trials available. They will probably ask you how you feel, how well you feel as they will bear in mind the possible side effects of treatment in making their recommendation. 

You haven’t mentioned if you are BRAF positive where you might have Dabrafenib and Tramatenib as an option,  I’m assuming they may offer you the combination of ipilumamab and Nivolumab, or the single treatments of Nivolumab or Pembrolizumab. 

There is a video done by Lancashire hospital which goes through what to expect going on Immunotherapy and the importance of telling them about side effects I’ve put the link in another post on here recently so you might have seen it, but here it is again 

https://melanomafocus.com/information-portal/immunotherapy-video/

I’m wondering how do you feel? What are your thoughts at the moment is there anything that people who have started treatment can help you with from their personal experience? Oh and welcome to the group, I should have said that first !!!!

Hi Jessyka

I was diagnosed with melanoma that had spread four years ago. I, like you, had a 'low tumour burden', i.e. not many tumours (two) and not large (yours are even smaller than mine).

I expect they will offer you systemic (all-body) treatment.

My melanoma was BRAF+ so I was offered two options: immunotherapy (in my case 'Ipi' because that was all there was on the NHS four years ago) and 'targeted therapy' (Dab&Tram).

(If your melanoma is BRAF negative then the targeted therapy won't work because your tumour cells don't have the 'target'.)

I chose immunotherapy. It worked for me and I have been NED (no evidence of disease) for three and a half years.

So your oncologist will have options to offer you. Each one had an up side (how likely they are to work and for how long) and down sides (the possible side effects).

All the best

Thank you so much for your clear reply and so pleased that it is working so successfully for you. Just waiting to see the team to see how we move forward from here. At least I know now, the waiting has been hard. Fingers crossed 

Once again, thank you . Will see if I’m BRAF+ this week and then will see what is on offer, you have helped so much and the link to the video made thinks much clearer. 

I seem to be able to cope much better when I have as much information as possible, that was why the 6 week wait was very stressful. I’m not complaining I have received excellent service, just 3 bank holidays slowed things up and my heart condition added an extra delay..

my husband had his 80 th birthday celebrations in the middle of the waiting but we didn’t let  diagnosis put a damper on anything.. just had to postpone a visit to France.

such a comfort being able to have a chat xx