On a low

Hi PC16 and welcome.

Let me start by saying I understand your concerns, however please don’t be too disheartened about a potential spread to your lymph nodes. This is obviously not helpful, however today’s treatments are becoming more and more successful at combating melanoma.

My original lesion was on my scalp. This was removed, followed by a WLE and SLNB. After further CT scans and biopsies, cancer was detected in the lymph nodes in my neck, and my MDT decided to perform a radical neck dissection (removal of 50 lymph nodes from my neck) prior to commencing any immunotherapy. So far so good, however a subsequent CT scan showed cancer in my liver and lungs….

I then commenced Ipi/Nivo followed by just Nivo and this was for a period of approx. 24 months.

The cancer shrank almost immediately and I’m now in remission.

I’ve been lucky in that my immune system was able to attack the cancer, and I didn’t have any debilitating short-term side effects during the treatment.

Hopefully you will find some positivity from my experiences. The treatment route (surgery/immunotherapy) was different in my case, however the outcome was as positive as I could have hoped for when I was originally diagnosed.

Good luck for the future, and please get back to me if you have any further queries.

All the best.

Hi Emo_Bham, thanks for taking time out to answer on here. Wow you certainly have been through the mill and an inspiration to show how things can turn around. I am remaining positive but apprehensive at the same time. Here's to the next steps and next battle. Thanks again and good luck in your own personal fight and long may you receive good news 

Hi Pc16. I can understand your apprehension, it’s a difficult and worrying time but I can only reiterate what Emo has said, treatment had massively improved over the last few years so there is every reason to be positive. 
I was also staged at 2b initially but after WLE and SLNB I was re- staged at 3b as there were cancer cells in my lymph node. Not a great result but it is what it is. I am now waiting on my CT scan and MRI on my brain, I can honestly say I’m more anxious about this and the results more than anything else (probably in case they can’t find my brain). 
I have a brilliant oncologist and she knew I was very worried about the prospect of immunotherapy, she told me that immunotherapy is like a mopping up system, the tumour is gone, but there is no way of knowing whether the odd cell has escaped into my system, so immunotherapy finds these cells and kills them. I felt better after this conversation, still a bit workout the side effects but I suppose ‘no pain, no gain’ and if the end results are good then it has to be worth it. Please let us know how you get on. You will be fine, you’ve got this!! 

Hi Jabs

Thanks for your support and response. I take the positivity from this and head into the next steps. Wish you all the best and positivity back with your own battles. 

Hello, read your post and wanted to drop a response of reassurance. I was diagnosed stage 4 June 23. No primary and the spread is top to toe with significant lesions in lymph nodes, also liver, spleen, bones and on top of head. Even now, the shock was indescribable BUT…..immunotherapy is a miracle, after first double dose, cancer in lymph nodes had shrunk! You can read my blurb for other info but basically I’m now stable. I have 3 more treatments to go out of 24. Fatigue after treatment (once a month), is the biggest side effect for me, I also developed itchy skin which was easily sorted with antihistamines. I hope my experience helps lift your spirits. It’s such a bewildering time but I found that connecting with folk on this forum helped. The inspiration & hope people offer is comforting so thank you to everyone who shares their experiences and knowledge xx

Hi Hevallan, thank you for taking the time to write a message of support, I have read your Bio and it has filled me with the hope and positivity I need. I wish you all the luck you need to continue to get through your own battle and get through this. Thanks again