2007 - 2023

Hi BigYin999 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you have recently had to have surgery for a recurrence of melanoma and you're having problems with the drains. I'm hoping that's sorted now.

There are lots of people in this group who have had lymph nodes removed and are now having immunotherapy so I'm sure they'll be happy to share experiences with you when you know what is happening.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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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Hello BigYin,

As it's now 6 days since you posted you've probably got used to the drain(s) now. I had 22 lymph nodes removed from my armpit, 20 were infected. I left hospital with only one drain and eventually got used to walking around with it in a carrier-bag -- even shopping. After 12 days they took the drain out as after this time they are in danger of causing infection. I can't remember the volume I was releasing at this time but it was quite a lot and I ended up with lymphodaemia. My wife had to massage my back and sides daily and I could manage my arm. I wore a sleeve and a compression vest for 12 months (the vest was a trial and I needed my wife to help me on/off with it) and attended the Lymphodaemia Clinic every three months. I still have lymphodaemia and there is little change over the last year! I've stopped wearing the vest and sleeve as it wasn't helping at all. I'm waiting a Clinic appointment soon to see what they say. I'm resigned to not seeing any change in the future but it dowsn't trouble me physically.

Hi bigYin999, I had a full axillary dissection on 2nd June due to metastatic melanoma.

I must admit I'm not feeing in anywhere near as much pain as I expected.

Although still a lot of numbers!

I am only losing 100mls of fluid in my drain, so hopefully means my body is all ready adapting.

I am not sure exactly how may lymph nodes were removed or were infected.

I do know that worrying about results will not change the outcome, other than drive me insane.

I am currently putting all my energy into recuperating and keeping my arm moving.

Being in touch with people who are also experiencing fighting this slippery disease  and hearing than there can be positive outcomes.

I am although dreading the treatment path more than the op as everyone seems to be very unique in their treatment.

• Sending positive thoughts to everyone out there and let's take one day at a time x

Hello Mum to 3!

I believe I was losing 80ml of fluid a day when they 'disconnected me'. It was much more in the early post-surgery days. I too experienced no pain, just discomfort with the large dressing and nervousness showering after the dressing was removed. I have no feeling in my armpit and upper arm any more due to the nerves being cut.

Although they removed 22 nodes (20 were infected) they did manage to 'miss' one -- which grew and caused me great concern until I had a scan and biopsy which showed it was benign -- but they are keeping an eye on it, just in case!

Have they not indicated your future treatment? Due to the spread of mine: lungs, liver, and adrenal glands, I was offered a course of immunotherapy with Ipilimumab and Nivolumab (4 sessions), and then just Nivolumab which I've been on now for a year. I'm telling you this in case this is what they may offer you -- and it does seem to be the treatment given in most cases.

I've been told that Nivolumab is only given for two years, after that, due to a build-up of toxicity in the liver it is usually discontinued. (This information may have been given me due to my age and an unlikely healthy liver at that stage?)

After the first course I was quite ill and admitted to hospital for 5 days and treated for all the symptoms. After that I've had no problems at all after treatments other than a great lack of energy, breathing problems (get out of breath after any exertion), and itching (creams provided help -- but my wife was forever shouting at me for scratching until I get the right cream!).

You should have no 'dread' of the forthcoming treatment. The above treatment causes many people no problems at all -- some carry on working and live a pretty normal life!

For me the treatment has been pretty successful: the tumours on my lungs have reduced to pin-pricks, my liver tumours have not increased in size for 6 months, but I will need to find out about the ones on the adrenal glands until after my early July CT scan!

I also have a hormone problem and will have to take cortisol steroids for the rest of my life. Just mentioning that should anyone have a problem with their adrenal glands.

Good luck with your treatment and think positive. You're young so keep healthy and eat healthy and do as much exercise as you can.

Thank you Barbican your your reply.

I have been told I will have further treatment of either immunotherapy or targeted therapy, depending on which one is best suited to me.

I have been refered to the oncologist, but heard nothing yet. Not sure if it will be when my pathogy reports are completed and know exactlly what we are dealing with.

Trying not to run ahead too much.

Just makes you realise that life will never be like it was before all this!

Hope you continue to stay well and respond to your treatment.