Just joined

Hi  and a very warm welcome to the online community

I'm really sorry to hear that having been clear of melanoma for 19 years you have recently been diagnosed with Stage 4. This must have been a tremendous shock for you but it's great that the treatment you're on has shrunk the tumours.

I'm not sure if there are any others in the group who have gone to Stage 4 after such a long time but there are certainly some who have after quite a long time after the original diagnosis. Hopefully some of them will respond to you soon.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi My original melanoma was on my thigh and in 2010 had a left groin dissection as my sentinel node showed traces of melanoma. The larger operation didn’t show any melanoma in the nodes they took out. I had  about 7 years of no evidence of any melanoma and had regular checks.Then I began to loose weight and feel nauseous.I was told it was just stress but later a C T scan showed melanoma was in my lungs,near my spine and a 11cm tumour near my kidney I felt very ill. I too was given targeted therapy of tablets and they worked for 7 months before a tumour started to increase in size.

I am now on Nivolumab every 4 weeks.I had the combination of ipi and Nivolumab for 4 treatments and only slight side effects.

I feel well.walk everyday and try to eat healthy food. I have recently been on holiday abroad for the first time in 3 years. I try to stay positive and manage to do so most of the time. At times however the gravity of the situation hits home ,but I am well supported by my husband and friends and also this web site.

I also feel that new developments and drugs are coming out frequently and I am in good hands with my consultant . Please take care and try to enjoy the things which give you pleasure. 

Hi Susie66,

I don't have melanoma but my Dad does. He had a mole removed from his back in 1993 which he was told was melanoma but that no further treatment was required. Fast forward to 2018 and he noticed a lump in his left armpit. Lymphoma was suspected and the was sent for various scans and biopsies. No one could quite believe it when it the biopsy showed it was melanoma - back after 25 years! He was diagnosed as stage 3 as no evidence of spread from the lymph nodes.He has now had all the lymph nodes removed from his armpit and as his melanoma was b-Raf positive he was started on targeted treatment like you. Unfortunately the side effects were too much and after 3 hospitalisations he was taken off the treatment and is now being closely monitored and having regular scans. A year down the line we still cant quite believe it came back. I've had a quick look through the literature and have only come across one similar case.

I hope you continue to do well on the medication.

Hi

It’s also my Dad that has a recurrence of Melanoma after having a mole removed from his back in the 80’s. He had no sign of anything being wrong until he was diagnosed with a brain tumour in September 2017 so he is also stage 4. He is also Braf+ and is on the Dab/Tram targeted therapy since January 2018. Most of his tumours have shrunk with some undetectable. The side effects have been hard at times and he’s had a few hiccups but is doing well considering how many tumours he had. If he had been at this stage 30 years ago he probably would not be here now. 

Hope you do well on the treatment 

Thank you for your post, I hope you are still well. My husband has been on targeted therapy since May but follow up scan showed more tumours in his brain and he started ipi and nivo today. We had a lovely summer while we believed he was getting better and he was so disappointed the dab and tram stopped working. Trying to be positive about the future....