Melanoma and mum.

First time i have ever posted in a place like this allthough reading other peoples stories and experiences has helped me greatly during my mums journey. To cut a long story short she was diagnosed with stage 4 melanoma with spread to liver and lungs 16 month ago, just after christmas 4 tiny brain mets were discoverd and she had gamma knife surgery and switched from pembro to ipilimumab, today we got mums latest mri results and while the previous brain mets cant be seen her oncologist says there is a considerable change in her brain and swelling, my question all though i know no one can give me answers is, what now? We wont know if the ipi has worked in her body till her ct scan results which has been brought forward to tomorow and then she is to be disscussed in an MDT meeting wendesday, i know the likely outcome of this will be no more options as she is braf negative and tried both immunotherapys, i suppose im looking for someone who is or has been in a similar situation and someone who can give me any advice on how to help my mum. Thanks for reading if you got this far. 

  • Hi,

    I'm so sorry to hear about your mum & the wait you now have to know what may happen next. Sadly there is no one on this forum who has been in this position as a melanoma patient (we are few & far between) and I'm Stage 3 so I have no personal experience of your mum's situation. However, please accept the friend request I'm going to send you so that I can send you a private message with information that I will try to find for you. I hope the MDT come up with another treatment plan for your mum,

    Angie (melanoma patient)

  • Thankyou so much for your reply, i have just accepted your freind request, and thankyou so much for your well wishes. X

  • Hi,

    So sorry to hear that your mum is going through this terrible disease, I know how incredibly hard it is. My dad is further down his journey than your mum and I've learnt very quickly everyone is very different but I wanted to reach out incase anything I may say help. 
    My dad was diagnosed with melanoma a few years ago but recently we found out it spread to his lungs and brain. He had one round of immunotherapy before it was found on his brain then it was decided that his treatment wouldn't continue. 
    It's been devastating over the last few weeks as dad has declined rapidly, he's currently looking at hours more than days. We just sit by him and try our best to keep him comfy and pain free.
    Before dads brain mets diagnosis in April he began to get slightly confused and had a slight personality change. He had a bad fall which led to the scan on his brain and after that he declined quickly and became less mobile until now he is bed bound. 
    As we keep being told brain mets are incredibly hard to predict, something we have come to realise. Dad went from being incredibly active to not being able to walk and we had to make the hard descion for dad to go into a hospice. 
    Everyone's stories and prognosis are different and I've read many positive ones however I'd really discuss as hard as it is some difficult questions now just incase. Like if the time comes would your mum want to be at home or a hospice. We tried to keep dad at home his wishes as long as we could but he needed 24/7 care and with family and work it wasn't sustainable any longer. If you are your mums next of kin, you really need to discuss making someone power of attorney, this is really important (something my dad didn't know). There might become a time when your mum is unable to make decisions for herself so it's really important you have the discussion first on who she would like to make those and make that legal. Ask your mum to write down her funeral plans if she hasn't done already. You don't have to discuss them and they can be kept away if that time comes. We found this to hard at first with my dad and now we really wished we had of. 
    I could write another 50 pages but don't want to bombard you with information that you may not need or worry you unnecessarily 
    As I've said I'm not saying this will happen to your mum but I wanted to let you know what I'm going through incase it may help in anyway.