Hi Marrowbone,

I'm sorry you are going through this. I don't think we have any Stage 4 melanoma patients on the forum - I'm stage 3 but haven't had any adjuvant treatment as I was diagnosed long before it was available. However, I know many Stage 4 patients who are on Nivo and some on Prednisolone. I have sent you a friend request - if you accept it I can share information with you by private message.

Meanwhile, good luck and I hope the results of the MDT are promising,

Angie (Stage 3 melanoma patient since 2009)

Thanks for the reply, Angie.

I was surprised that no other Stage IV people on the forum! (Hopefully  that's not because we don't last too long!)

I've had great stiffness in both my calfs recently and walking is difficult and painful so was called in today for a ultrasound scan to eliminate dvt -- the results showed its the Nivolumab that's causing it! Which is good news considering the alternative!

You were diagnosed in 2009 so it's been a long time for you -- and you are still a Stage 3. That's good. Are you having any treatment at all?

I thought I'd mention my symptoms as, one never knows, other Stage 4 patients may join the forum and be alert to the possible symptoms. 

Good luck!

The forum tends to get newly diagnosed early stage melanoma patients or those awaiting a referral or biopsy results for melanoma. 

My only treatment was a full node clearance from my groin and pelvis so I've been very lucky, mainly due to the great care from my consultant Plastic Surgeon and, previous to that, my dermatologist (I was Stage 1 for 13 years before progressing).

Please accept my friend request so I can share information that will help ( I won't share other patient's information on a public forum). 

AngieT,

You've been very lucky. Mine was diagnosed after biopsies April 2022 -- and I was then Stage 4!

Started off with a small mole on my back that started to bleed. It was the 'inconvenience' of blood getting on towels and clothing that I had it investigated.

Within 2 months I'd had 2 biopsies (a small and a huge one), and 22 lymph nodes taken from my left arm. Within a couple of months I had tumours on my lungs, liver, and right arm lymph nodes. Whilst the lung and liver tumours shrunk I developed one on my adrenal glands. Which is where I am now.

My scan today to eliminate dvt resulted in the pain attributed to Nivolumab. Just one more side effect!

Be thankful for your good luck.

I'm forever grateful for my good luck. That's why I try to keep up with melanoma research and treatment and pass it forward where I can. Unfortunately I've recently been seriously ill with an unconnected health issue which has been life changing but I'm still here to tell the tale, again thanks to wonderful care from the pancreatic clinic.

Melanoma is a sneaky, unpredictable cancer. Treatments have come on great leaps since I first started my journey although the side effects can be debilitating.