Recently diagnosed with Stage 4 Melanoma.

Hi Sean,

It sounds like you and your family have had an appalling time recently. My mum is being treated for stage 4 melanoma at the moment. She's BRAF negative which means the only option for her is immunotherapy right now, although there are more treatments being worked on all the time. Til therapy in particular looks really promising. If you're BRAF positive that means you'll have more treatment options so if your current targeted therapy doesn't work they can move onto another, or immunotherapy later down the line. From stories I've read on here, some people find a really long lasting response from targeted therapies.

I'm sure you'll have read the statistics about stage 4 but they're always out of date because the treatments are getting better every year, and many people with stage 4 go on to lead long, normal lives. Somebody posted on here recently that their husband is now suspected to be cured after being diagnosed stage 4 five years ago, which is fantastic. In terms of asking questions, it's tricky because melanoma is quite unpredictable and treatment pathways will change depending on what's happening. I woild just say don't be afraid to report any side effects or symptoms early so they can be resolved by your oncology team.

Best wishes to you and your family. This disease is so hard to deal with, but you'll always find support on here.

Pip x

Sorry you are walking this path,It stinks, but you seem to have a great attitude.  I am also a stage 4 patient and on the same medications.  Braf/Mek combo.  I have been on this almost a year now.  I did have to decrease to half dose due to high fevers.  I had tried combo immunotherapy prior - it did not work for me.  Only caused side effects and my melanoma spread to my lungs.  When I started the target therapy - I had instant relief - as you have mentioned.  Within one month - all of my tumors shrank or disappeared.  I have remained stable since.  My main issue is joint pain.

The goal currently for you (and me) is that these meds can work for as long as possible.  Some do add immunotherapy while on target therapy - you could ask about any combos.  But if it is working - they may just stick with what works.

I have labs monthly and scan every 3. months as my follow up.

Best wishes to you.

Hi Sean,

I'm at the waiting stage having been told I have melanoma from a mole that was removed. Hearing the consultant say cancer, start talking about lymph nodes,it spreading was all a blur.

It's turned me from a fairly go lucky guy to a shell of a person, who just thinks about cancer. I never thought I'd be like this with bad news. It can really hit you very hard cant it? Telling my wife and children was very hard. Just living is very hard.

Still waiting results having been told different things by the NHS. This doesn't help as if you are like me get stressed expecting to hear and then delay adds to the worries.

I'm in North Herts so fairly near you. I really hope things go well for you and you find inner strength I appear to be lacking.

Best wishes 

Hi like you when I was diagnosed last July all I got told was I had melanoma and you need to go to royal marsden in London which I said I don't have transport to get there as my mole was on side of foot so how was I supposed to get on a train with a sor foot. I was sent to broomfield  in chelmsford. I'm in east herts. Then I got all these phone calls telling me I needed all these scans nobody told me why so it was so scary. Then I ended up having a skin graft and slnb which took 8 weeks for lymph node biopsy results which was positive now I'm at London for treatment. The oncologist at London are so good and they look after you and explain better. There is hope do you know which stage yours is at.

Hiya

Yes I am still waiting for the official news but expect confirmation and have typical symptoms of it spreading but understand no real diagnosis yet. Sadly doesn't stop your head filling in the gaps in facts for me anyway.

Good luck with your treatment and I hope it's effective for you. I'll update here when I know the exact details.

Thanks for replying and sincere best wishes for you

Hope your results are not to bad but there is a lot of treatment. Just that they don't tell you everything at the start don't Google it as I did and scared myself even more Google sites are out of date just stick to the UK cancer sites.

Thanks..will post when I know more. Don't Google anymore...try to carry on with work/life and family best I can.

I work as a support worker with young adults with learning difficulties so need to concentrate really.. have 3 kids, dog and a supportive wife and friends.. really lucky in lots of ways.

I live in Hitchin btw. Whereabouts are you from in east Herts? 

I live in bishops stortford

Ok...I like bishops Stortford. I hope you have a good support network 

Yes thanks I do have family friends and work colleagues  and oncology consultant and cns nurses are all great at London.