Experiences of Nivolumab

Hi I have been on Nivolumab for now over 2 years in fact in two weeks time it will be my 30th infusion. My tumours were very large to begin with and they shrunk considerably and after the pet scan I had there was no melanoma in my lungs ,near my spine and also the large tumours near my kidney were dead. I was going to stop treatment  but they then felt there was a part near my kidney that they weren’t too sure about so they put me on Nivolumab for another year. I am happy about this as was anxious about stopping treatment.

I do have side effects but as time goes on they have become easier. I had a slight rash and also joint pain. I am tired after the treatment and then maybe a day or so after. I try to get out and walk whenever I can.I also feel diet plays an important part in keeping healthy and I eat a lot of fruit ,particularly berries and vegetables and oily fish. I was told to keep off probiotics and aim to have a wide gut bacteria.

I am so impressed with the way Nivolumab has worked for me and grateful I can have the treatment. 

You have to get a blood test 2 days before treatment and then someone rings me to give me the results and asks if there are any problems before giving the go ahead for the treatment. The infusion lasts just over an hour and I am in hospital for for approx 2 hours as you have to have a cannula fitted. I would wear gloves to go to hospital as it’s best to keep your hands warm for the cannula to go in easier. If you ever have any problems you can ring the help line as they are very helpful. Hope this helps. Good luck and let us know how things go 

Hi, thanks so much for replying I'm glad you've found it a "good" treatment option and I'm glad it's been successful for you. 

I had been reading that it would be given through a central line so it's interesting that you have a catheter placed each time. My veins aren't great so I hope that's not the case for me, I'm also very needle phobic and with heightened anxiety anyway think my veins would just shrivel up and hide! Haha!

One of my main worries is whether I will still be able to work as I work nights and with only one other staff member but I guess it will just be waiting to see how the medication affects me.

Thanks again, I will let you know what happens.

Hi Lgrgdg90, would you mind me asking what stage were you when you were diagnosed back in 2010? It is so reassuring to see you are doing so well 10 years after the diagnosis. I've been diagnosed with melanoma two weeks ago, stage 1B for now, but awaiting toe amputation and sentinel node in 2 weeks. Dreading the results and hoping to remain 1B but very scared as I too have been misdiagnosed for over year and initially told my mole was ok and had a warty structure. I will be very grateful for your response xx

Yes after a SNB i was diagnosed as 3a as it had spread to one lymph node Apparently only a tiny amount and then I was told it was best to have a groin dissection. I wished I hadn’t as I was in hospital for 2 weeks and was told they hadn’t found anything so I ended up with lymphodema for nothing. Also the two week stay was not very pleasant. 

I then had check ups for 7 years with chest X-rays every 6 months. I was clear until 7 years then began to feel unwell. The doctor put it down to stress but eventually I was diagnosed as stage 4. I was in very poor health with the melanoma 3 years ago but with treatment I feel very well now and make the most of each day .When it works immunotherapy is an amazing treatment. I wish you well and try not to worry as it won’t help you. Try to keep busy and even in these strange times try to do things that give you pleasure even if it’s just sitting reading or going for a walk in the countryside. Let us know how the operation went and you will be in my thoughts .

Thanks so much, it's very appreciated!! xx And what stage was your initial mole when cut off before sentinel moved you to 3A? I'm so dreading being moved to stage 3. I can't believe you went through the groin dissection for nothing and ended up with lymphodema, how awful! :( I am dreading lymphodema, too as there is a small risk following the sentinel. I don;t think they recommend full groin dissection anymore these days, do they? Probably because of what you just said.. Those 7 yrs with clear results must have been amazing, and then so scary to jump to stage 4. I'm so glad immunotherapy works for you. I try my best to stay positive but then small things throw me straight back into the panic mode. Thanks so much for your response, and I wish you well, too. I will keep you posted xxxx

it’s a long time ago and I think I was 2a due to the depth of the melanoma. I did go through a lot of anxiety and went to my local cancer care centre for massage and councilling. I personally didn’t find the councilling very effective as I was told to talk for the hour without been given any advise. I remember at the time I wouldn’t read anything about the subject. I do find this site very helpful and people who are going through it or have gone through it can give you sensible advise. Take care 

I find it really difficult not to overthink things, I already suffer with anxiety and depression and where my first diagnosis was "just having a mole off" I don't think I fully processed it so now that I'm stage 3C it's kind of knocked me for six. I already had counselling and because I work in veterinary field I have a lot of medical knowledge anyway so I actually find that researching and finding out the WHOLE picture, good and bad, really helps to clarify my decision making.

I'm dreading starting immunotherapy in case I can't work, it's already taken my running from me  also because my LN tumour was too small to find on PET scan I'm constantly thinking where else is it hiding that it's not been found... ? 

I have a LOT of questions for when I speak to the oncologist haha! 

I know what you mean. I had my first session with clinical psychology, as I needed some advice on how to explain to my little boy that Mummy's toe will be "taken out", without mentioning the C word. It was OK, but I am not sure I will find further sessions that beneficial, it is mainly me talking and them telling me how I feel is absolutely normal. You take care, thinking of you xxx

Thanks, yes I need to tell my boy too, he's 7yrs old and pretty sensible cos of my job but also sensitive and will also overthink.

You take care too, here if you need to chat more xx

Ah UKSmurf1981, sorry to hear you're struggling. I don't suffer from anxiety but this diagnosis knocked me for six, too and I am sure I had a minor panic attack for the first time  in my life due to it. I am a worrier, so this doesn't help and tend to overthinking stuff, just like you. I don't think I will be able to run again, having my toe amputated soon. I will be thinking about you, let me know how you get on xxx