You are quite right, melanoma removed (December 30th) from forehead after 3 hours of surgery over two operations but spread to right lung, 30mm approximate size and seeing oncologist next Thursday on face to face. Interested on what they are going to say, how it can be removed and if it life threatening.
OK. The oncologist will explain the drug treatment plan they will be putting in place. The options will depend on whether you are BRAF positive or negative (also known as wildcard). Everyone has the BRAF gene but in 50% of patients it's become mutated & this is BRAF positive. The tissue from your melanoma will have been tested for this.
BRAF positive patients have the choice of targeted therapy or immunotherapy. Negative patients can only have immunotherapy as the targeted drugs don't work for them. You should be given literature explaining all this & the possible side effects of drug therapy - not everyone gets side effects. They will probably arrange to start the treatment within a week or two. These treatments are showing great results so will hopefully will start shrinking the lung tumour. They may also suggest it's removal once it's shrunk but sometimes it's not necessary if the drugs do their job.
Good luck at your appointment & please let us know how you get on.
Just now sinking in after 2.00pm today at the hospital, told that without immunotherapy I have one year left. Had 6 blood tests today, PET scan and brain scan next week to be followed by immunotherapy every 4 weeks to hopefully survive. Told no surgery has the melanoma is like a child playing hide and seek and will come out from hiding to fight again, hence this is the way forward in an attempt to clear the body. 5 years ago, the worst day of my life, was diagnosed with bowel cancer but got remission 2 weeks ago. That day all those years ago has now been left way behind has this is an even worse event, yes therapy is great , but oh those words “1 year to live” really hits home. Very difficult to hold back the tears it’s like a nightmare you want to wake up from. Not sure what I want now, life just seems a complete mess and reliant, I hope, on drugs to keep going. Think we all say the same, “Why Me”.
I'm so sorry John that you've been given this prognosis, but please know that immunotherapy is having great results for many melanoma patients and I know some who are still with us several years after their terminal prognosis. Please accept my friend request and we can chat by private message where I can give you details of several organisations that you may find helpful.
What I find so, so difficult is long dog walks every day, 27 wall press-ups daily and gym once a week, I feel physically great but mentally feel pretty low. I know I have to try and forget that question I asked “how long have I got” and the answer was a year without immunotherapy but it’s that first bit of the answer that hits me mentally. I do try to forget it but it keeps coming back, somehow it keeps there, sitting above the therapy and I’ve got to switch it but I don’t know how. Does it get better after some sessions of immunotherapy's results, thinking things are going to get better or is that horrible fear the treatment will not work. People say it’s results are of a high percentage, not 100%, “but” keeps creeping in if I’m one of the unlucky ones. I do try and keep positive but it’s so hard, I think talking does help me but certainly need, something to calm me but that’s not easy.
