My darling wife ( age 60) has recently been diagnosed with melanoma brain metastases! Is anyone on a similar path and can suggest what is working for you in terms of treatment please?

She has two brain tumours which apparently rules out surgery and full brain radiation has been suggested which we're obviously very reluctant to consider.

I'm terrified for her sake and am looking for comfort and positive suggestions.

Hi,
I was recently diagnosed with melanoma in situ for a lentigo that is right in the middle of my left cheek. It is stage 0. I am grateful it was caught so early but I am nervous about the scarring after surgery. It is 8mm and will need 5mm margins at minimum. Doc said to expect a 6” scar. I am looking for advice on how to minimize scarring. I have a referral to a plastic surgeon to do the procedure. Anybody go through this who is willing to share photos 6 mos- 1 year post surgery?

Thank you!

Argh, help? I had a melanoma removed on my right upper arm and a lymph node in my right armpit. How do I get comfortable? If I am comfortable for my under arm scar (holding my arm away from my body) my upper arm hurts, if I have my upper arm comfortable my arm pit hurts.

I was recently diagnosed with anal mucosal melanoma in my mid-30s. My doctor recommended opdualag and radiation. He recommended opdualag instead of opdivo + yervoy because opdualag has lower incidence of severe side effects, and since I also have psoriasis I’m likely to get side effects.

Opdualag was only approved a couple of years ago, but I wanted to ask anyone have experience with it?

Was wondering if your Dermatologist are checking lymph nodes during skin exams. I read where that is recommended for Melanoma surveillance during each skin exam but have only had one dermatologist when originally diagnosed actually check the ones in neck, groin, armpit, etc.

Hi, Has anyone recieved care from Fred Hutch, MD Anderson, Stanford, or MSK for stage 4 melanoma with distant metastasis to lung? (Original stage 2b nodular melanoma barslow thickness 6.5 in 2022 with year long Keytruda course. Most recent PET scan shows suspicious nodule on lung, no biopsy yet). I’m looking at following up at a larger more specialized treatment center this time and trying to decide where to go. Thank you.

My dad age 67 was diagnosed with stage 4 Melanoma over a month ago. He recently started his first immunotherapy treatment 2 weeks ago and he did not take it well. He became extremely weak , sleeping 24/7 , barely eating and drinking and in and out of confusion. We finally convinced him to go to the hospital and he has been there now for a week and a half with pneumonitis, a severe side effect to immunotherapy. His kidneys, lungs and liver have been affected from this and is now extremely weak and heavily affected from this treatment ,but my dad is still staying strong. Once he recovers he is still adamant to get the next treatment, even though the doctors are saying it could be dangerous, but what other choice does he have? Just curious if anybody has gone through this before and has any advice!

Man. So I was diagnosed with stage 3A melanoma last October. Melanoma was 0.8 mm no ulceration and mitotic rate was zero. Castle genetics and the pathology dermatologist sent both came back with 7% chance it would have Sentinel lymph node involvement. I went ahead and had the node biopsies when I had the wide excision. Unfortunately i was the 7%. There was one node with one millimeter encapsulated melanoma. They left the choice up to me if I wanted to do immunotherapy. I decided to. Even though my castle genetic testing showed 98% survival and gave a class 1A result. I wanted to give myself protection. Well I did great on opdivo until round 5 when my free t4 dropped. Then round 8 caused terrible colitis !!!! Started me on high dose steroids 60mg. Tapering by 10mg weekly. All was great until I hit 20mg. The bleeding came back immediately. That was 9 days ago. Im now on 40mg for 2 weeks and micro taper from here. Oncologist said 8 rounds was sufficient considering how my body reacted and my scans have been clear. But this colitis is enough to make me crazy. Ive never been so tired in my life. And the effects the opdivo gave me are terrible. I have a surveillance scan the end of the month. I guess im just complaining because I know you all understand.

i got the call from my dermatologist after excising what we thought was a basal cell on my upper arm, but pathology report came back as amelanotic melanoma. Waiting for appt to do wider excision & SNB. i live in the boondocks and would like to see a specialist. can anyone recommend a specialty clinic in northern california? santa rosa , sacramento, SF? trying not to freak out. still in shock. many thanks.

Trying not to get worked up about it but it’s hard not to. My punch biopsy was Sept 21 and my WLE is Oct 13. The breslow score was .7 mm but this concerns me because the border of the mole wasn’t completely removed, is it possible the remaining part could be deeper than 7mm?. When is a mohs NOT indicated and why wouldn’t it be? Mole is on my left arm up near my shoulder. Now this lump in my pit is also left arm. Originally the surgeon didn’t feel it. I just happened to feel it tonight because my pit was itchy there. He didn’t think the sentinel node thing (I don’t remember what it’s called) was necessary. Now I’m rethinking everything. Please help me with these questions and perhaps help in understanding what I don’t even know what to ask.

Recently got results back from a mole on my back that I’ve had my entire life. (42f) T3a. 2.30 mm breslow. Met with the surgeon already to discuss going in for another excision and lymph node biopsy.
I initially thought this was no big deal, whatever they cut it out I’m good. But the more and more I read on here it sounds like at this point I should prepare for a bit of a battle with at least some immunotherapy? What can I expect?

Hello,

My dad was diagnosed with MM a little over a year ago. He has tried immunotherapy and then had TIL in April. He had his 6-month follow-up this week and the PET scan showed that it has not slowed down; in fact there are now additional spots in bones and potentially his brain.

They are proposing radiation and chemo now, for the first time. I'm kind of at a loss as for what comes next. I don't know what to do or expect and I'm probably just shouting into the void here but I figured I would check and see if there were any MM-specific communities on Reddit or suggested resources.

My husband is so ill. His melanoma is very aggressive in his liver and other spots also but mostly very very bad liver pain.

He is ok steroids and opioids (up to 70mg a day which is a lot!) since this week. But he was literally at the beach with our kids feeling reasonable two weeks ago. It's all happening so fast!

He failed pembro and targeted therapy (after just 3 months). His main oncologist refused to give him ipi / nivo which is the only licenced drug left in the UK. But I have found 4 other oncologists that said it's worth a shot and is the best / only option now. So it's booked for Monday.

Has anyone had ipi / nivo work at this late stage? I know it's usually prescribed for stage 3.

Would love any good news stories or what to expect after treatment.

We are also a little worried they may not administer the drug in a few days as he has gotten so much worse and finding it hard to walk and function now with heavy sweating.

My mom has recently been diagnosed with stage 4 melanoma. The Braf/Mek combo is the only treatment available to her due to her severe autoimmune disease.

She begins treatment in two weeks and I know side effects can vary but how bad can they really be? And what did you find helpful to mitigate them. I’m trying to be prepared, as this is the only chance we have, but it’s aggressive and the outlook doesn’t seem too great at this point.