Hi all,
I've been a 'lurker' on this group for the last 2+ years, many of the discussions have been really helpful and got me through the dark days but i've never had much to add to whats has already been said, now i have a question.
A bit of background: Malignant mole removed followed by WLE 2.5 years ago, 3 monthly scans all good until Jan this year when 2 hotspots appeared close to lungs and heart, surgery not an option so on to double hit immunotherapy. I seem to be collecting all the rare side effects; drug induced hepatitis, testosterone down to sub-normal (along with all the side effects that brings), rampant thrush (and I mean rampant, its awful) and peripheral neuropathy in my feet.
The neuropathy is the worst thing, red-hot needles, numbness, anything touching my feet is painful which means walking is torture etc. I'm on 450mg pregabalin a day, 30mg slow release oxycodone twice a day with 7.5ml liquid oxycodone every 2 hours. Its kind of keeping it just manageable most of the time and i'm getting better at zoning it out and have learned to cope with sleeping in 2hr chunks. Luckily I'm in IT and work from home so I can continue to pay the bills, always a worry though.
So to the actual question: has anyone else had to deal with this and tried acupuncture, capsaicin or any other treatments ? My team at the hospital are excellent and doing their best to help but sometimes new ideas or lateral thinking is needed.
Due next round of immunotherapy next week provided the huge amounts of steroids have got my liver back in shape again, hoping it doesn't jack the neuropathy up another notch!
On the plus side, the family are having a good giggle when the planets align and I'm acting like i've had a dozen pints and just need a kebab :-)
Hi , welcome in from lurking ! 
I’m sorry to hear of all your side effects.
I haven’t had peripheral neuropathy, but I have had acupuncture whilst being on immunotherapy, and it was suggested because of risk of infection that it wasn’t a good idea. I was having acupuncture and physio for a frozen shoulder and it was working well, but I listened and stopped even though in hindsight their reasoning wasn’t fully explained, I was so keen for the Immunotherapy to work that I’d follow any instruction, I’d also had an all over body rash (the most common side effect I think) so I stopped and just carried on with physio.
Im hoping someone else’s experience will help, or at least that it’s good to say hi there.
Take care KT
