Metatstatic melanoma spreading from the lymph nodes

Hi Hollypop

There is really no point in doing the surgery once the melanoma has spread past the local lymph nodes. It won't help and having major surgery will knock you back. You need systemic treatment, which treats your whole body. Immunotherapy is the most effective systemic treatment available.

Immunotherapy activates your own immune system to attack the tumours.

You have probably been offered Ipi/Nivo or possibly Pembro (which is like Nivo). I was treated three years ago and, at that time, the only immunotherapy on offer was Ipi on its own.

I also did not have a lymph node clearance. I had two tumours, one at least 5 cm and one at least 2 cm. I had four infusions of Ipi at three week intervals.  When I was scanned a month after my fourth infusion, my tumours had shrunk to half. By the time I was scanned three months later, there was no sign of them on the scan. There is still no sign of them and it is now two and a half years later.

Good luck with the immunotherapy. I hope it works for you as well as it worked for me.

Best wishes

Hello Hollypop

I was diagnosed at the end of May beginning of June with Melanoma, and unfortunately it was already in my liver, lungs, abdomen and other areas, it took what seemed like an eternity to have more scans, more biopsies and then a first meeting with the Oncologist that I am now under.

My oncologist like yours I guess weighed up the various options available and has not permanently ruled out surgery or radiotherapy at some stage in the future, but this would only be on a tumour that might be life threatening due to its impact in a particular location, like the brain for instance.

I haven't asked my oncologist about the size or number of tumours I have, simply because I am happy with the treatment that I have just started, which is the Combination immunotherapy Ipi/Nivo, perhaps this is what you will be offered. My understanding of how the treatment works is, that it will galvanise the immune cells in our body to recognise and  attack the cancer cells, therefore if the treatment does its job on one tumour, it will do the job on all of them at the same time.

I hope this helps you understand a bit more about why they might have said to leave the surgery, but get on with treatment, but like you probably are, I was and still am very frightened, imagining that its spreading while you wait for the treatment to start, but some of the results for the immunotherapy are fantastic, and surgery would delay your treatment starting.

I had my first session on 11 July, and cant wait for the second, I just want to get it into me as soon as possible.

All the best

Hi Moira

Thank you very much for taking the time to reply. My appt to discuss immunotherapy drugs is this week so I don't know which one I will be on but you have given me great hope.

I was feeling that the future was very bleak I was worried that I would not see my 2 week old baby grandaughter grow up ( how could I with cancer in 3 places in my body ) but now realise I have to trust the doctors and the drugs.

Many thanks

Hollypop

Hi Sensible 1

Thank you for the explanation it has been very helpful. I think I am still in shock at my diagnosis as it has only been a few days. Your attitude is such a good way of approaching things, I will try and stay as positive as you.

I wish you well with your treatment

Kind regards

Hollypop

Hi ,my hubby is having combi treatment at the moment it works in such an amazing way . We felt he needed to constantly have drugs to treat him but dr explained how it works & felt much happier about it all .at first  I was  terrified but he has remained so positive. People I have spoken to say they think it’s probably worse to be on outside than going actually going through it. Remain positive talk to your specialist nurses , they help so much x good luck 

Hi Sensible 

Just read your post. wondering are you getting on? sounds like we are in a similar situation. I hope you are doing well.
Well can’t things chance so quickly. My news was not good after telling me I could go on the immunotherapy for a year they gave me a pet scan and now they say it has spread to 5 different parts of my body. It was only about 3 months ago before  my op to remove the lymph nodes that they said they couldn’t find anything else on the pet scan. They are now offering me a choice.  pembrolizumab for a year or the more aggressive combination of ipilimumab and nivolumab which as much worse side affects. Treatment lasting 2 years. I don’t think I have much choice but to go for the double treatment. They sent me for a head mri.  They say although they couldn’t see anything on the pt but an mri will give a clearer picture if it has spread to my brain. Won’t get that result until the 12th when I go back and then start treatment within the following couple of days. I am a bit scared the cancer has spread so quickly. That also said they would see if I had the braf gene which I think could change the treatment offered.

Hi I am writing to try and reassure you that immunotherapy seems the best way forward. I had cancer in my lymph node in my groin over 10 years ago. I was strongly advised at the time to have a groin dissection. However nowadays immunotherapy is a much better way to go. I had the groin dissection. They didn’t find anymore cancer cells but it left me with lymphodema in one leg. I went on to develop melanoma in my lungs ,near my spine and also a large tumour of 15 cm near my kidneys. I was very ill but I then had targeted drugs dram and tram and they shrunk my tumours by half and some of the disappeared. I then had ipi and Nivolumab for four treatments and am presently on Nivolumab.

It is scary and upsetting at the beginning but once the treatment starts you will cope. My tumours have almost disappeared except the 15 cm one which is now about 6 cm. They are not sure whether it is made up of dead cells but on a the safe side I am to continue with Nivolumab.

Regarding side effects everyone reacts differently but my advise is to keep your team informed of any side effect and then it can be dealt with.Take someone with you when you go to see a consultant but if this is impossible ask for everything to be put in writing as it is often hard to take everything in. My side effects were mild. I suffered more on the targeted tablets but again everyone is different. 

I do wish  you well and keep in touch on this site as it really helped me to know others are experiencing similar things.

Dear Lgrgdg90

Thank you so much for getting in touch. I feel so much better knowing you are doing so well. It has been so scary knowing the cancer spread so quickly. 
keep well

DaisyRed