Just sharing the end of our story.
My father passed away on 01-01-2016 after battling stage 4 melanomas for 8 months. After being diagnosed with mutliple bleeding brain mets early October we had 2 really good months (compared to the time with zelboraf) with hospice care at home but without further cancer treatment (he had serious heart issues after one single dose of nivolumab). He didn't have any permanent cognitive issues after the bleeding had stopped and dexamethasone took care of the swelling. Doctors were really suprised how good he recovered. So he was able to enjoy all meals, drinks, could walk a bit but we all knew it wouldn't last forever. Then, some days before christmas he developed hemoptysis and was really short of breath the whole time. To fight his fatigue he received a blood transfusion which unfortunately didn't help anything. He didn't suffer great pain thanks to low dose morphin drips and after he became bedritten he got a morphin pump together with lorazepam. Final days were really tough for us all – the mechanical-like breathing in the last few hours will haunt me forever.
Now, i am not sure about hospice care only. It really was a great help and he could die at home, surrounded by his family. He didn't have to suffer pain i think. But, for the last 2 days or so i don't know because he couldn't answer any more. Doctors assured us he wouldn't have to endure pain with his medication.
On the other hand, with all the great news about new treatments all around it was especially hard for me not to do anything and i think i will forever think about the "what if…" and "maybe we should've continued nivolumab". Sure, his quality of life with zelboraf was really bad and even nivolumab knocked him down with fatigue, loss of appetite and heart issues… maybe even the bleeding was caused by it? We don't know for sure.
Thinking of Artie. He replied a lot to my posts and gave advice how my father could maybe make it until christmas. Artie literally tried everything and had to fight a lot of side effects and pain. He lost the fight, too. This reminds me that there still isn't a cure for lots of people even with all the good news about immunotherapy all over the media…
So, for all late Stage 4 Warriors out there: please write down your will how you want to be treated when you can't decide for yourself any more, for example when brain mets hit really fast or suddenly begin to bleed. Just in case. It is super hard for relatives when they have to decide wether to continue treatments or going into hospice care.
Thanks everyone around here for giving good advices and sharing lots of information and even good news in some cases. Its good to hear that new treatments help more and more people fighting this ugly, horrible disease. Keep up the fight.
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