I was diagnosed with Desmoplastic melanoma a few years ago. I had three surgeries and a year of immunotherapy- Prembo/Keytruda drug. Has anyone had long term side effects of this drug? What was your experience? Would be grateful if some could share.
sorry I can’t help with a reply to your query hoping you can mine
i was diagnosed with desmoplastic melanoma in April had wide excision and lymph node removed that drained the area my mole was in both came back NED they had said original removal was taken with clear margins I think this means I will not need immunotherapy just awaiting my follow up next week after just getting my results
could you advise if your instance was similar to mine
juat wondering if they will just leave it as is at moment or if I will be asked to have immunotherapy
I think it depends on the staging - have they told you what stage your cancer is? mine was a stage 3b and I was offered immunotherapy as there is a high risk of local recurrence. Hope that helps. Where did you get the melanoma? Mine was on my neck.
thanks for reply I am back at hospital on the 6th they rang me with NED news last week so I presume they will tell me stage then
Mine was on right side of my chin it had been a scar from an abscess many many years ago didn’t hurt or bleed was just there it had shades of brown like a mole for about 4 years but last Summer became slightly raised and I thought better just get checked was put on 2 week pathway by GP and went to hospital they removed same day then waited 12 weeks for melanoma result had wider excision excision and flap no skin graft needed they also took the one node that sowed up linked to that after the nuclear injection showed it linked to that area
this was 7 weeks ago the plastic surgeon was amazing and it’s healed beautifully the hospital also offer skin camouflage lesson with it being facial
I don’t know much about the immunotherapy side but I hope all goes well I am not sure if will be required to have it u have my appointment next week after having wider excision and node removal 6-7 weeks ago it all becomes a blur good news at this moment in time I am NED but will get my stage I presume at next appointment
Hope it all went well and no side effects keep us upto date that would be great
Hi, I have had 9 sessions of pembrolizumab for stage 3c superficial spreading melanoma. I had minimal side effects. Good luck with your treatment, it was a lot easier than I thought it was going to be.
Thank you for the reply. Im positive about.my treatment in mind and body. After workin in nhs for 30 odd years I treated my patients well and always listened to them. Just my first day but awaiting any side effects but as you say hopefully none . I am 65 but very fit no comorbidities. Don't take any meds no other health problems. Mine was melanoma lower back area had wle and snl. 8 weeks ago
I had similar - mole in middle of back, WLE and SLNB, but results showed spread to one of my lymph nodes. Went on pembro, scheduled for a year and had 8 out of 9 treatments but melanoma grew in another lymph node while on it (noticed from treatment 5-ish). My experience with the pembro wasn't too bad, and the only real side effect I had was tiredness for a few days during the week after infusion. Other than that I carried on as normal.
Hi just read your post if you don’t mind me asking how long ago was this and are you NED at the moment I was diagnosed and treated this year just got NED last week lymph nodes and mole area where negative
it just make you paranoid your always thinking am I really or is this crafty little devil lurking
I had the WLE and SLNB in May 2024, started pembrolizumab in October 2024, last one (no. 8 of 9) in August 2025. Because it return to a lymph node while on treatment I had an inguinal lymph node dissection in September 2025, then started 12 months of nivolumab in January 2026. So far scans are clear, but having them every 3 months at present. I'm hoping they got it all with the last surgery, but I'm always anxious waiting on scan reseults.
