Stage 4 melanoma

I also had an undiagnosed amelanotic nodular lump for over 2 years. Experienced dermatologist did not see it as a risk. Where was your cyst?

Just about to start immunotherapy at 3c. Can’t comment on combined treatment but wishing you all the best.

Am trying to spread the word on the rarer non-pigmented melanoma which are not included in published guidance such as that from NICE, MacMillan. 

Hi Fenella, 

I was wondering if you had any update on your progress with your treatment so far? My partner has also been diagnosed with melanoma brain mets (x 3) and had his first session of Ipi/Nivo this week with Cyber Knife surgery planned in a week. This is all a huge shock for us to so would love to hear how you're going as it's such a similar story (we're from Australia...)
Hope to hear that you're doing ok. xxx

Dear good vibes.  I feel bad that I have not been on this forum for a long time because I find it really helpful.  I had only one dose of Nivolumab/ipilumomab last September.  I was told that the double whammy had a higher risk of side effects but also a better outcome.  I am 57 and in good health so I went for the double dose.  Unfortunately I developed colitis within a week and was very unwell but this was efficiently sorted by Infliximab.  My 2 brain metastasis were zapped by gamma knife and the latest scan shows no other metastasis. Because of the problems with the colitis I was on steroids for a long time so could not have the lymph dissection and wider excision of the primary site.  A coil was inserted in the lymph node where the melanoma was way back in October to be able to identify it in case the medication worked.I had the operation at the end of January and I when they did the wider excision and removed the lymph node there was no evidence of disease.  I have clearly had a good response to just one dose of immunotherapy but I know not everyone responds in the same way and no-one really knows why. Do please stay in touch and please reach out to me

Dear Albobs, my cyst was in upper arm. How is immunotherapy going?

Please reach out to me.  It was so scary a few months ago but now I am more calm not only because I have a reprieve but because I really want to help other people.  I remember the gut-wrenching feeling that this was the end but I am still here and educating myself on all things melanoma!

Another thing. I was a bit of a guinea pig.  The latest train of though is do give immonotherapy before operating on the primary site

Hi Fenella! Thank-you so much for your story. It's so encouraging to hear how well you responded to the immunotherapy. My partner had he primary site excised 5 years ago and also had a necrotic lymph node removed just before we found out before the brain mets so we're hoping hoping hoping it doesn't pop up anywhere else. So far he's had no side effects from the immunotherapy (it's only been 1 week though). The Cyber/Gamma knife sounds so promising for the brain mets so hopefully throwing all of this at him at once will initiate some kind of response. 
He's 38 and otherwise extremely fit and healthy and ready to battle this so hard. 

It breaks my heart that your partner is only 38. He is too young to be going through such scary issues and I guess you are the same age?  Gamma knife has stabilised my brain mets and the immunotherapy has worked for the time being.  I am off to India next week to photograph leopards in the wild.  My oncologist has a patient in his nineties who has had stage 4 melanoma for 20 years.  He relapses, has one dose of immonutherapy and then keeps going for another 10 years....

Do please keep in touch xx

Hi you two, I've just found this site. My husband is having the same treatment as you, the double dose immunotherapy. He started with a melanoma on his back 5 years ago which he also had removed. Then in October last year he developed a lump under his arm which had then spread to his lymph system, grade 4 in a lung and a small area in his brain. 

He is 53 years old and being treated at the Christie in Manchester.

Just completed his 3rd cycle of both drugs last week. He sailed through the 1st two treatments fine but this time it has knocked him for six. Lethargy and itchy rash this time. 

Really helpful to find someone else in the same boat.

Hope to hear back from you.