Can't sleep and irritable

So sorry to hear about your situation.I too have stage 4 melanoma and have it in the spine,lung and a mass near the kidney.I am on immunotherapy and my tumours are shrinking but now waiting till next week for my latest scan result.  I have had insomnia and asked what I could take for it and was told any medicine from over the counter pharmacists. I tried sleep well spray but it didn’t work. A doctor said to try Kalms night tablets and they are helping me a lot.

I initially had ipi and Nivolumab together for 4 lots and apart from tiredness and a slight rash I have been ok and now am on Nivolumab only.I have slight muscle ache but I can cope with that.It is even harder for you as you have your new baby to look after.I send you my love and my thoughts are with you. Take care 

Hi , I sorry to hear the pain that your in. It’s my scan today today so I’m amazed I wasn’t awake last night to. You mentioned that you have contacted the palliative care team and your GP, have you spoken to the hospital 24 hr team. They have the knowledge of what it’s ok to take with the immunotherapy better than your GP and any local team, they can also talk to the consultant if needs be in between appointments, especially as you are still on the double dose, they would also need to know if you want to take any medication or vitamin supplements including an over counter one so please check with them before you do anything without their say so. 

Its tiring enough caring for a new born without this added diagnosis, I hope you have a partner or friend that can give you some help locally or a mother’s support group that your local Gp, midwife or health visitor might know about. It’s been a long time since my kids were young but my childminder was also a volunteer for a local support group.

I hope things improve for you soon. 

Hi,

Thanks I'm having a very hard day. 

I've phoned Beatson helpline about my pain 3 times, but each time I've been told to phone NHS 24 and they refer me to my local city hospital. Are the side effects the same every time or can it change each time, guess I'm looking for some light at end of tunnel.

I have lots of support, my mum, sister and my mother in law are dividing up the working week to care for me and Harry, I've lost all confidence looking after him alone. 

Hope your scan goes well.

Hi , sorry for my late reply it’s been a long day. So glad you have help from family for you and baby Harry, I had no family near me when I had my girls but my husband was marvellous but it is a shock when paternity leave is over and you have to cope on your own even with no illness, and routines change just when you’ve got used to them ! Anyway back to melanoma....

With side effects there are certain weeks that side effects have been seen to start and finish. I’m putting a link into the 2019 Melanoma Patient Conference , a video by Dr Pippa Corrie on Immunotherapy side effects

https://youtu.be/f1MxlEqTbnE

Thank you scan done this afternoon, results not due until 11/9 though, but as I’m currently clear that takes a bit of pressure off results, I’m clear until I’m told otherwise, since my surgery 9 months into restarting Pembro I’m now classed as having it adjuvantly, and I have my daughters visit to look forward to she’s arriving from Japan on Friday so I will be off site for a little bit while she’s home, but as you can see there are many lovely people who will step forward to give replies, not just me. 

So I hope there is a light to your tunnel and the promise of for some people, and we all have to hope it’s us to become no measurable disease and to stay that way for a very long time. 

Best wishes