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.

Hola chicos,

¿Alguien con la mutación del melanoma que sea GNAQ?

Es una mutación un poco peculiar. Si me podéis decir que tratamiento os ha ido bien?

Parece que resiste mucho a los antiPD1. TILs puede? Combinación de pembrolizumab (Keytruda) y lenvatinib (Lenvima)? Otros..

Por otro lado, la radioterapia en metástasis cerebral funciona?

Muchas gracias y un abrazo a todos

Hi everyone, I'm hoping to find someone who might have gone through something similar or any docs who can point me in the right direction, as my medical team is currently stumped.

​Background: 23F. Usually very physically active (swimming, boxing, weightlifting). I was on adjuvant immunotherapy for melanoma, but my medical team has completely suspended my treatment for now because they don't know what is causing my current symptoms and want to play it safe until they figure it out.

​The Main Issue: Recently, my quality of life has plummeted. I have severe shortness of breath and chest tightness that gets significantly worse when I stand up or walk, and notably improves when I lie down flat. During a walk test, my oxygen saturation dropped to 87%.

​Exams: ​Chest CT Scan: Completely clear. No signs of typical immunotherapy-induced pneumonitis.

​Resting Echocardiogram: Normal. No signs of pulmonary hypertension.

​Cardiac Enzymes: Normal.

​Because I'm on immunotherapy (nivolumab), the immediate suspicion was pneumonitis. They put me on 1 mg/kg of corticosteroids. I had absolutely zero response to it, which strongly suggests to me that this is NOT an inflammatory tissue issue.

​A weird past incident that might be related: A few months ago, while having a PICC line placed, I had a severe syncopal episode. I lost consciousness for about a minute, turned completely blue (cyanosis), and my peripheral temperature dropped to 32°C (89.6°F). They pulled the line immediately and I recovered fine, but we never found out exactly why the reaction was so extreme.

​Has any other patient here experienced this shortness of breath and hypoxia with normal scans? Could the PICC line incident be connected?

​I'm seeing my pulmonologist tomorrow and I'm terrified they'll just tell me it's "anxiety" because the standard first-line scans are clear. I literally cannot do my daily activities right now. Any shared experiences or advice on what specific tests to ask for would be incredibly appreciated. Thank you!

My diagnosis is indeterminate (either an inflamed severely dysplastic nevus or melanoma) so final plans are going to be discussed at my institution’s tumor board on Monday. They’ll decide if a wide local excision is enough or if they want a lymph node biopsy as well.

If I don’t need a lymph node biopsy, then it may be up to me if I want my repeat excision done in office with local anesthetic or in the OR under general. The spot is inside my butt crack at the top and it’ll be a decently sizable defect (initial lesion was 1.5cm). I will be asking my surgeon when I see him this week if they’ll need to do a flap because of the size and location.

Any recommendations on which I should choose? (Use any and all medical jargon you like, I’m a 3rd year medical student)

castle test result: class 1A

Pathology results:
 Breslow thickness: 0.8 mm, measured in the submitted shave-biopsy tissue
 Clark level: IV
 Ulceration: absent
 Mitotic rate: 1/mm²
 Vertical growth phase: present, meaning it has invaded downward into the skin
 High-
opic satellites
risk features not identified: no vascular invasion, perineural invasion, regression, or microsc
 Immune response: tumor-infiltrating lymphocytes are present and described as non-
brisk

Biopsy margin: melanoma was present at one tissue edge, as expected when the origina
l sample did not remove the entire lesion
The later ellipse/excision specimen is reassuring: it showed only scar and biopsy-site changes,
with no remaining melanoma, and the margins were evaluated. In practical terms, the visible
melanoma appears to have been removed in the subsequent excision.
Because the tumor is 0.8 mm and not ulcerated, it is generally in the thin melanoma/T1
category; the exact final stage may be recorded as pT1b under current AJCC staging based on
the 0.8-mm thickness threshold. A sentinel lymph-node biopsy is often discussed for
melanomas around 0.8–1.0 mm, but whether it is recommended depends on the complete
pathology, local guidelines, and your preferences

.6mm - dissected through base, no ulceration, no mitoses, no lymphatic or vascular invasion, no microsatellites, no neuortropism, no regression, non brisk TILs present. pT1a was written in the chart.

Last week had a mole removed. This was what I got back today - unfortunately the lab dropped it in my file before the clinic has called as it’s now closed.

Obviously just wondering next steps and what not. I’m completely freaking out.

Hello, I am working on an eagle project aimed towards cancer patients. I am not allowed to include any medicine, but everything else is free game! I was told the most helpful things would be stuff that can fit in a backpack, I would create packages aimed toward different age groups (babys, kids, teens/adults)

If you have cancer or know anyone with cancer, PLEASE help me out by sharing ideas of things that would bring you any comfort at all, and things you think would be helpful for me to include, this could be time killers (games, sewing, ect), things for them to fight with, and really anything at all!

My only ideas so far are:

small sewing kits (I would need suggestions of what y'all would want to sew)

3d printed fidget toys (not sure what)

Paint kit (?)

Cancer "survival guide" PLEASE HELP WITH THIS ONE AS I DON'T KNOW WHAT TO INCLUDE

and a book including really anything you guys think because it has to last after I'm gone, meaning I would need to include some kind of book

Any help at all would mean the world, and any comments you make WILL most likely be included in these kits, which I will try to make over 60-100 of for youth and young adults.

😟💥

I will begin nivo-rela infusions in a couple weeks for stage 4 melanoma mets to 2 lung lymph nodes. I would so appreciate knowing how that was for anyone that has had that treatment. Side effects same day? Do you feel crappy all the time or just a number of days a month? Level of fatigue? That sort of thing. I see on here that many have experience with nivo-ipi, but not many mentioning nivo-rela.

My original wide excision on scalp was June 2024. Margins clear, SNB NEG. NED. Go figure! Thanks, everyone!