Help and Advice

Hi Haley and welcome to the online community

I'm very sorry that your dad has recently discovered that his melanoma has spread to his brain and lungs. I can understand how devastated he must feel having got to 5 years with no problems. I myself am just coming up to 4 years after being diagnosed.

There are quite a few people in the group who have experienced spread and who have had treatment which has either got rid of the tumours or has kept things stable. Hopefully, once the MRI scan is done and reported on, his consultant will be able to come up with a treatment plan.

Do come back and let us know how the scan goes and what treatment is planned as then others on that treatment might be able to share their experiences with you.

x

Thank you so much @latchbrook for responding. He had his MRI today so will know more tomorrow abs I will update. Is there anyone here who is having the treatment for brain metastasis? 

Are you currently undergoing any treatment or just check ups? 

Kind regards- Haley

Hi Hayley

Thankfully I'm just on three monthly check-ups, although they've been by telephone since May. Not quite so reassuring as actually being seen but I know that they will see me if I'm worried about any changes I find.

Chaba (Clare) is currently on immunotherapy for brain metastasis. If you click on her username you can read her profile. I've 'tagged' her into this reply to you and hope that she might be able to pop in and let you know how she's getting on.

x

Hi Fordad, I’m sorry to hear about your Dad, it’s a worrying period waiting for all investigations to happen and for treatment to start. I am pleased to hear he’s feeling well and active although currently saddened by his diagnosis. My advanced melanoma diagnosis was 5 years ago and was told a less than a year prognosis so I can appreciate what your Dad is going through. In that time time I’ve met a few people who have had melanoma affecting their brain some of them no longer with us but I know of a couple personally, one who is retired and still on treatment by tablets, and another who is working full time, on no treatment now having had ipilumamab, but still having check ups and is stable from memory 8 years on. 

They can not tell which people immunotherapy will work on and those it won’t so if asked they have to give the bad news I suppose. I have not had brain metastases but when Dabrafenib a targeted treatment failed after 9 months for me I was encouraged by reports in the paper about Jimmy Carter former president of USA who was reported as being clear after brain metastasis from melanoma. He had cyber knife treatment and then immunotherapy drug Pembrolizumab, the drug I am still on. 

Things are not all doom and gloom yet for your Dad, for a lot of people with advanced melanoma it’s coping with that uncertainty and making the most of now that keeps people going.