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Hi Djron.

I can understand why you're questioning the need for Nivolumab, however in my opinion, if your oncology team are recommending it, I'd go for it.

I'm not a medic, however I know a number of people who have thought they were clear of cancer, only for one cell to creep through and it to establish itself elsewhere in the body. 

I'm currently on Nivolumab, having had a combined Ipilimumab / Nivolumab course late last year. 

Yes, some people have significant side effects, however at the moment I've got away relatively lightly, and have no side effects which prevent me from living an active life.  Hopefully you'll be the same.

Clearly it's a personal decision, but I'd get as much ammunition on my side of the battle as possible!

All the best & good luck.

Thank you for your reply, just a lot to take in..

Hi Djorn. I was in your position in 2020 after having had a mole removed and been given the all clear. I was fit and well and scared of the side effects as you are. However I then had a swelling in my groin and have had to have a complere groin dissection of my lymph nodes which was a big operation. I don’t regret my decision and am now on Nivolumab every 4 weeks. Yes there are some manageable side effects but in hindsight if I had had the treatment earlier maybe I could have avoided the invasive surgery. I am clear of cancer and hope to stay that way with the treatment. Hope my story helps.Take care x

Thanks Dicksie, your reply does help thanks for taking the time to reply..

Hi Dicksie, Emo, the more I read about this drug and the side effects the more I worry, I seem to find more bad stories than good.. My head really is all over the place at the moment…

Hi DJRON.

It may be worth having a chat with your Clinical Nurse Specialist about this, as I’m not sure about the statistics.

What I would say, however, is that if you look at the potential side-effects list for paracetamol, that can look concerning also.  From my personal experience, the drugs have attacked my adrenal glands, which means I’m on hydrocortisone tablets for the rest of my life. My initial thought was “steroids for the rest of my life - that’s not at all good - I’ll gain weight, etc., etc.”.

In reality, I take two very small tablets a day, which have just enough cortisol to mimic the body’s natural cortisol levels. It’s really not an issue.

As I mentioned previously, I may just be lucky, but I can’t believe that’s the case (hence why I suggest talking to a specialist who can hopefully give you a bit more perspective).

My decision was easy - my oncologist suggested that I might have between 9 and 12 months to live without treatment, as my melanoma was metastatic and had spread to my liver and lungs. No decision necessary!

My liver & lungs are now clear of the cancer, and I have another 12 months of treatment.

Sorry for the rambling reply, but I’m concerned that you make a decision based upon a list of potential side-effects, which may not be at all relevant to you.

All the best.

Hi Djron, I've just read your post and i just had to reply as I'm in a similar position to you. I had mole removed in March which was melanoma stage 2 then had wide local Excision and sentinel lymph node biopsy. They found a very small amount of cancer in one of the lymph nodes they removed so that automatically put me up to stage 3. But like you my cancer has gone so it's really difficult after feeling its all over and i can start to get back to normal They want to give me treatment. I may the very difficult decision to wait i should of started treatment last week but i have a massive family holiday planned in November that had already been put off due to covid. I didn't want to go away worrying about side affects from the treatment so my oncologist has said i can start it afterwards. I just hope I've made the right decision but  this holiday is so important to me. I'm being scanned regularly so i pray that I'll be fine. Good luck with everything going forward. Xx

Hi Moggy, thanks for your reply and. I wish you well, I to have decided to not have the treatment and have the regular scans and if anything shows up in the future I will have treatment. There is no evidence that the treatment stops your cancer coming back and if it does I’ll put up with the side affects of treatment.. I wish everyone who is going through Cancer the best of luck we are all different and have to make difficult choices. Good luck with all your choices..

Hi DJRON.

I respect your decision - it's always a personal "risk assessment" that has to be made and only you can balance the risks and rewards!

All the best for the future.

Hi Djron

I'm glad to hear you have made a decision that’s right for you. I was in the same position 2 years ago and it was such a relief once I made the decision not to have the treatment at that time. I fell a great weight had been lifted off my shoulder.. Lots of luck for the future x