Hi,

I'm so very sorry to hear about your mum and the worry you are all going through. 

Can I ask, how old are you and your brother? I can understand how your mum wants to protect you both but perhaps you need to sit down with your dad and tell him how you feel and that you want to be there for your mum, and your dad, but you need to know the reality of what mum is facing. Hopefully it will make dad have a talk to your mum and that she shares everything with dad so that he can share it with you. Or, if she at least gives her doctor permission to talk to your dad directly - he can ask to record the conversation on his phone so that he can share it with you.

Without knowing how many tumours there are and where in the brain they are you won't know if there is any treatment left available to mum or whether it's now only palliative care that's suggested. I hope you can get dad to speak to mum - you all need to be there for each other and you can only do this properly if you know the prognosis. I will send you a friend request so that we can talk by private message if it helps.

Good luck and please let us know how you get on and how your mum is doing.

Angie (Stage 3 melanoma patient)

Thanks so much for your message.

We aren't youngsters, I'm 40 with a family and my brother is 41. 

We have told both of them that we need to be kept up to date, dad told me that more brain lesions were on the scan this week without mum knowing. Dad knows we need to be told but you can't really rely on him to get the facts right.

She is currently having immunotherapy but has been goung down hill since she changed to this treatment about 8 weeks ago.

I'm.so worried as she is in a & E on her own. 

I'm sorry that you are a patient also of melanoma. I hope your treatment is going well.

Thanks

It can sometimes take immunotherapy a while to start working and the patient can get worse at first before starting to improve. I hope this is the case with your mum.

Hopefully A&E will consult with your mum's team so that she isn't alone there for much longer. 

Hi there, 

I am sorry to hear about your mum. I myself have just begun immunotherapy as I've had a recent recurrence of melanoma in a number of different lymph nodes, as routine ct scan and now Pet scan have detected.

I have been told that immunotherapy can take a while to have a positive impact but can show durable results in the long run. I hope this can be the case for your mum. 

Sometimes when the immune system begins to try and attack the lesions, the lesions can swell as a result of this infiltration, which can both make subsequent scans look more alarming and create further symptoms temporarily. If effective however, this infiltration of the activated T cells can start to break down the lesions or stabalise them and in some cases kill them all together.

I do hope that you get some fortune. Please keep us updated and let us know if we can help.