Hi John,

I'm sorry you are both having to deal with this diagnosis & it does appear very confusing if not explained fully. I will try & give you a short explaination but I will also send you a friend request so that, should you accept it, I can send you more information by private message.

It's only in the last 6 years or so that treatments were available for melanoma that are now showing great promise. Before that there was only surgery (chemo & radiotherapy do not work on melanoma). Because they have only been available (outside of a clinical trial setting) to Stage 4 patients for about 6 years there are no survival statistics for longer than 5 years (it also takes a year or two to collect those stats). However, the success they have seen in a great number of patients is giving hope that survival will go much further past the 5 year date, they just have to wait for now. That is why your wife's team are being careful with their language. You have to remember that this is measured against the lack of treatments (other than surgery) in previous years, so immunotherapy & targeted therapies are a great lifeline these days.

These treatments allow the patient to live with the disease, sadly there is no cure, but many patients I know are living for much longer at Stage 4 - some were on the clinical trials for the drugs & are still with us, with No Evidence of Disease (the melanoma equivalent of remission), up to 10 years later, so there is hope. Also, being BRAF+ means your wife will have access to targeted therapy & immunotherapy (if & when the targeted stops working) so don't despair. Please don't hang your hat on the word 'terminal'. This term is used when all treatment options have been exhausted and the cancer continues to spread, so your wife isn't terminal. I hope this helps a little. Please accept my friend request so I can point you towards more information that will be helpful. 

Angie (Stage 3 melanoma patient)

Hi Angie,

thanks for your reply. 

Ah ok, that makes a lot more sense. I wish it was explained like that yesterday. I do unfortunately have to accept that we are in no way in a good situation, but there is a lot more hope now than we had yesterday. So it's a case of get the head down and fight like hell.

The potential side effects do really worry me. But the alternative is worse so it's a non issue. 

Hi,

I am in the same position, my partner aged 38 was diagnosed stage 4 in april with Mets everywhere in his body and brain.  He was started on immunotherapy which at the time they said didnt work (tumors had grown and increased in llaces) so started him on the braf mutation tablets.  11 days later we had to go to velindre due to stomach problems, he had a ct scan which showed they had shrunk in his liver and stomach.  Drs dont know if it is the new meds as it was so soon or if the immunotherapy had started but which ever it is the change since then has been amazing.  He was pretty much bed bound 5 weeks ago, now hes living his life like before he was diagnosed.

We are under no illusions that his condition is still very serious especially because of the brain tumors but his lumps have gone and he is no longer stuck in bed or twitching etc.  The side effects can be scary but there is hope with these treatments.

I hope you see some results soon ... sometimes things get worse before there are improvements x

Hi,

It's so good to hear that your husband is doing well.

Angie (Stage 3 melanoma patient since 2009)