r/melahomies

Hi everybody, I am a 49 year-old married mother of three daughters, and I just got diagnosed with stage one melanoma last week. I’m seeing an oncologist tomorrow. I’m very overwhelmed, and I don’t know what to ask. Could you please tell me some helpful questions for my appointment tomorrow? I’d really appreciate it. The diagnosis has overshadowed my whole week, including Mother’s Day yesterday. It’s just really a lot to deal with, and any advice is appreciated. Thank you so much.

I was diagnosed with stage 0 a year ago and obviously have to go for my regular checks every 6 months even still because the type I have is the genetic type. I went to my appointment later than 6 mo. Honestly more like 8 or 9 and had a few moles I wanted to have removed. I saw a diffrent doctor this time who basically told me no to removing them. Also hardly looked me over didnt even check my scar area or my arms feet ect. It wasthe most negligent skin check ive ever had. Should I call and have another one done? Or just wait the 6 months? Do I call and have the spots i wanted checked checked by a different doctor? Anytime ive wanted a mole removed they did it just to be safe.

Hi melahomies, had my annual PET scan today and met with oncologist following. Unfortunately formal report wasn’t ready during appointment with oncologist but he was able to look through images himself with me. Everything looks clean except for one new tiny nodule on lung, less than 5mm with mild uptake of 2.0. Was not there at PET scan last year. He was not overly concerned after looking over images and told me to continue with regular follow up plan which would be 6 months. Immediately following appointment the report loaded in portal and radiologist listed the nodule as “possibly inflammatory or metastatic”, which just seeing that word sent me into a bit of a tailspin, and recommended follow up CT only in three months to monitor. I guess my question is, should I put more weight into what my oncologist felt was not a seemingly meaningful finding or should I be more concerned? Waiting to hear back from their office to see if he wants me to compete the three month rescan or not. I feel like prior to scan I was either prepared for the best or the worst but not this “gray zone”. Alas, I should probably get used to this feeling throughout the journey! Any thoughts?

edited for more context: orginal stage 2a, 16 months out from WLE and negative SLNB with no history of recurrence to date.

Some background: I’m 37M and had a WLE to remove a nodular melanoma on my upper right arm back in March 2025 (10mm breslow; 11/mm2 mitotic rate; ulcerated, BRAF-negative, NRAS-positive). Started on Pembrolizumab (Keytruda) the next month. Full axillary clearance to remove all lymph nodes in my right armpit in May, two of which came back positive. Had a local recurrence while on treatment and another excision to remove that tumour in December.

I just finished my treatment last month and had an end-of-treatment PET scan… all was looking good on my previous scans but I ran out of luck this time… I now have multiple tumours on my lungs including a 25mm one on my upper right lung and two 15mm guys in lower lobes on either side, plus several smaller ones scattered around. But the real kicker is a very active and aggressive tumour on my liver (SUV 10.3) which seems to be a tricky place to treat.

Oncologist seems extremely pessimistic and has said that treatment options are limited to ipilimumab on its own (not the ipi/nivo combo) and that surgery isn’t a possibility. He basically said that given how things have progressed while on first line treatment, the chances of ipi working are slim. I feel like he has pretty much given up on me.

I am trying not to lose hope but it is hard. I have reached out to some other doctors across Europe about clinical trials for TIL etc. that I might be eligible for. If anyone knows of centres currently enrolling I’d really appreciate any info at all. Or if you’ve done something similar, how you went about it. I am based in Ireland.

Thanks 🫶

Just looking around at UPF50 clothing. Not sure if worth it?

Also stepped up my suncream as used to buy whatever that was cheap but just got LRP and other brands highly rated after the Choice disaster (in Australia at least). I also need to buy a squishy hat that slips into a handbag more easily.

Anyone else?

Just had my WLE, SLNB, and skin graft Friday for Mike da mole. Had a full body check scheduled for the 12th and knew I wouldn’t be able to go in so did it early. She called this morning and one of the three spots she took is melanoma. She said while they’re in there they can take care of this too. Nope, I’ll get to go in again. It’s the same leg too. Now to sweat out waiting for my node biopsy to come back. I’m so tired of waiting and not knowing. I know I should be grateful they have found these but, this stress is literally driving me insane. I don’t want to talk to anyone about it until I know if I’m ok or not. Probably not even then. This is a lonely road.

I had my first session of dual immunotherapy 2 weeks ago. I am experiencing some fairly annoying itching symptoms along with a small rash. Antihistamines are not really helping much. I attended the oncology triage. They are not concerned and doubt that it’s a side effect - too early. They think it’s eczema. I have no history of eczema.
Anyone else?

Just diagnosed from GP Friday, so waiting for a call from the plastic surgeon (Quebec) for WLE and SLNB. As I very impatiently wait, all google will tell me about regression is it isn’t a good or bad thing. FYI: Breslow thickness 2.3 mm, no ulceration and mitotic count of 10 per 1 mm 2. Pathology report said it could be in situ but can’t rule out metastatic deposit. I have the report so let me know if there is other pertinent info I should mention. Any input appreciated but mostly looking to understand regression.

On 29.04. I had my second infusion with the dual therapy opdivo and yervoy and I started getting fever up to 38.7 degrees. It all lasted for a whole week where I was taking paracetamol and ibuprofen, now I still get chills but the fever sometimes disappears on its own and it's up to 37.4 degrees. My liver enzymes were high last week, I may need to check them this week. On my first infusion on 01.04. I got fever on the second week and it went up to 40 degrees with elevated liver enzymes, which resulted in my prescription of dexamethasone for a week, which helped a lot.

My question is- for the people who got through this whole cycle, or even 1 or 2 infusions'- did you get fever? How long it lasted? My oncologist said if the liver enzymes don't drop, they will carry on with monotherapy. I decided to make consultation with the top melanoma specialist in my country because it's a relapse I'm treating and I'm afraid I'm not giving my best chance to kill the little monsters if I switch to monotherapy and he said that it's very uncommon for people to get high fever while on therapy. Colitis, hepatitis (which i have 2 grade), pancreatitis, pneumonitis were much more common. I'm wondering what is going on here? And apart from the fever and mild hepatitis I don't have any other side effects. Then he referred to gastroenterologist who specializes with autoimmune hepatitis.

And please spare the :ask your oncology team advice. I already did, just having 2 opposite opinions. My main oncologist said it's absolutely expected to raise temperature while on therapy.

My husband made it to day 0

Pre chemo day -5 and -4 were rough

had his cell infusion today at 1130 till 130

3 bags were made , he tolerated well

A bit tired now but I think to be expected.

But the smell ! The cells and preservative have a smell and it comes out his pores and breath

Like a metallic sour onion

At one point my eyes were watering

I was surprised to hear they are not starting the old until 18 hours after

Will update again

Hugs to all in this journey

So, had my first oncology appointment yesterday after my recurrence. I'm Stage 3 Metastatic, but it hasn't spread beyond the single lymph node that's got a tumor in it, and MAYBE a small mole on my scalp which they're referring me out to a derm to check out.

Either way, my doctor thinks that it's highly treatable, that outlook is good. I'm just going to have to stay on top of this shit for the rest of my life, most likely.

Breathing massive sighs of relief over here. I've been getting lightheartedness spells recently and I was so afraid it had spread to my brain, apparently it's just George (my tumor's name) poking up against my carotid artery and occasionally interrupting good blood flow.

I'll take it. Plan is for me to down a few months of Keytruda and then cut this asshole out of my neck.

Is there anyone here who is/was Stage 4 and received treatment at Moffitt Cancer Center in Tampa,FL? Were you pleased with the level of care you received, and is there a specific oncologist you can recommend? I see there are a few who specialize in melanoma.

Thanks everyone!

My husband was diagnosed with stage 4 with Mets to brain, lung, liver and bone in Feb 2026. A stage 1 mole was removed from his scalp in 2012. So yes, it came back to him after 15 years almost.

He started with ipi/nivo comb in Feb. He got seizure the day right after his 3rd treatment where his oncologist flipped ipi/nivo dose to the aggressive more stronger one. Then he got second seizure 4 days after his 4th cycle which is the safer dose as the first two round.

Now he’s on dexamethasone 12mg a day. His oncologist stopped his immunotherapy because of the brain tumor swelling resulted in seizures. She wants him to be on steroid with weekly lab. His total bilirubin is 5. She wants the number to go down a little then start him on targeted therapy pill. But he only has BRAF class 2 mutation.

Can anyone please share some of your thoughts? Thank you very much!!

I received my TILs cells on 3/2/26. It's been 2 months and I'm still dealing with the side effects. I am so scattered, very ADD, can't focus and constantly forget things. Has anyone else experienced this? If so, when did it get better? Is there anything I can do to make it better? I'm so frustrated with myself. I can't even focus to read a book, which was my favorite thing to do pre-treatment.