Hi,
I was originally diagnosed with melanoma 3C in my heel in 2017. At that time there was no treatment until you got to Stage 4 and then it wasn’t great.
I’ve had a number of reoccurrences in my ankle and last year I found another big lump on my ankle - my melanomas have never been moles they have always been clear or red lumps. This time I was sent to Oncology and started Pembro last December. I had a really bad skin reaction after the first treatment but was then ok. However after 3 treatments the cancer had spread to my leg and I had 3 “lumps” and my whole lower leg was red blotches which they said was also the melanoma. I had electrochemotherapy on the 3 lumps (and it was successful on 1) and started ipi/nivo in April. First treatment I was fine second treatment ended up with severe pneumonitis(i had no symptoms until I actually got to the cancer centre that morning and even the nurse I had spoken to that morning came in and said you were fine on the phone and I was yep I know) my oxygen level was 82% and I was on high flow oxygen and general oxygen (they told me if I had left it another day I actually might not have been here to tell the tale!) was in 9 weeks and now have a hospital bed in my living room as my lungs are never going to go back to what they were and will stay slightly damaged. Towards end of August ended up in A&E as had rung it in and as my oxygen levels were 90%, temp 97.1. Got to hospital and temp was 98.9 oxygen level 90% and blood pressure high. Was admitted and was in 8 days as I had pneumonia and pneumonitis and had hit all the sepsis markers.
So oncologist said she can’t guarantee she will give me any more immunotherapy because of how ill I’ve been. My last two scans have shown a lot of inflammation on my lungs from the pneumonitis - my oncologist actually showed me my scan from February which was basically a perfect set of lungs and then my last which had so much white inflammation. I’m BRAF negative so I don’t think there’s anymore immunotherapy treatment after Nivo. Has anyone been in this position and been offered anything else?
Sorry this is a long message.
Hi tiggerjump and a very warm welcome to the melanoma forum which I hope you'll find is both an informative and supportive place to be.
I don't have the right experience to share with you but noticed that your post hadn't had any replies. Responding to you will 'bump' it back to the top of the discussion list again.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
