Mother diagnosed in August StageIV – your thoughts on process

Hi all – my mother was diagnosed in August with having stage 4 melanoma. It has spread to her brain, liver, spinal cord and lung – took us completely by surprise.

As there were multiple tumours in the brain (>10) and due to their positions on the brain, the doctors decided WBRT would be the first step forward. 

We were told the next step most likely would be immunotherapy but we should wait for the biopsy results. When the biopsy results came back it was found that she has the BRAF mutation (not sure which one) and the doctors wanted to start us on the BRAF/MEK targeted therapy instead.

I was unsure about us switching to the targeted therapy when we had immunotherapy lined up but the doctor explained that it was a better option at this point in time since :

a) my mother is still on very high doses of cortisone which affects immunotherapy negatively

b) targeted therapy acts faster compared to immunotherapy in the cases they have seen and my mother's case calls for immediate results

c) the WBRT has most likely damaged the blood-brain barrier and the BRAF drugs would make their way there with greater success

We were going to start the treatment last Monday but the weekend leading to that my mother had a brain haemorrhage. Noone would agree to operate on her due to the risk, her being on blood thinner drugs and the extent of the damage. Miraculously, she seems to be slowly recovering, talking again, still in bed of course, with control of her limbs and she has started eating normally again. The doctors believe she is now stable and the haemorrage has most likely stopped as she is getting better each day. No CT scan to confirm this yet.

The doctors have said we should start the targeted therapy as soon as possible : Dabrafenib but only that one alone as a) the Trametinib drug has not yet arrived and b) Trametinib causes higher instances of haemorraghic events. 

I understand that this is an incredibly difficult situation but I have been reading great things about these treatments. I haven't read anything about stage iv people with multiple sites of metastasis though.

My questions to you are – in your experience :

a) Does dafrabenib/ trametinib work well for people with many sites?

b) Have you or anyone you know started on dafrabenib and then added on trametinib a while later?

c) Is it worth me buying Trametinib privately than waiting for it to arrive? Worried that doctors are not giving trametinib because it hasn't arrived, not because it causes bleeding events.

d) When do we start seeing results of the targeted therapy – how do you guys check that it is working?

e) Should I ask the doctor that we switch to immunotherapy and cut down on cortisone to do this?

f) Really scared about what WBRT is going to do long term – when do you usually start seeing effects?

g) Should I push the doctors to find the primary location of the melanoma? It is non-melanotic (i.e. has no dye) so it's not easy to find but i can get a dermatologist to do what they need to do if it is necessary.

I keep telling myself my mother can get to an NED state if I everything works as expected and I'm not giving up hope.

Thanks for taking the time to read this – I have read plenty of the posts here. You are all going through a massive I wish for courage to you and your carers as well. Have a nice weekend everyone!