r/melahomies

For those who aren't on their email list, I got an email from them today, about their sale.

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Sadly have lost my mom, a melahomie, yesterday afternoon. She had stage IV metastatic melanoma, and me and her would come on here and read stories and advice. I really thought she was going to be okay, but she fought so so hard up until the very end. I just feel like I wanted to share, because we were silent members, never posted just commented a couple of times. I just want to send everyone love and support and strength that they can get through this, whichever stage. Hers was acral lentiginous melanoma, so it unfortunately is often found too late. I’m so proud of her, and I will miss her so very deeply forever and forever. 😔🤍

First dose of keytruda today on my two year anniversary of my first oncology appointment. Second round of immunotherapy, post radical hysterectomy. Let’s do this!! Melanoma sucks.

I, 36F, felt a bump on the back of my left shoulder about 5 months ago. I thought it was a small cyst that would go away (perimenopause is fun and I've had cystic hormonal acne for a couple of years now). After about a month it was larger than any other cyst and I realized I was going to need it removed by a dermatologist. It took me about 3 months to find a dermatologist who would look at my cyst. By that time it was the size of a very large blueberry if not bigger. I scheduled to have it removed 10 days after my consultation.

It was removed on June 7 and the dermatologist said it wasn't a cyst, but that it was an angiolipoma that was so deep that it was up against the fascia. I took a picture of it in its little specimen jar and went on my way. You can imagine the gut punch on June 18 when I got a call stating that the pathology report showed it was metastatic melanoma.

I went in for a full body exam the next day. The did a shave biopsy of my "sketchy mole" I've been keeping an eye on for as long as I can remember. The mole is like 4 inches below the tumor. June 26 I had an appointment with a surgical oncologist. He did another full body exam and checked all of my lymph nodes. I'm scheduled for a WLE of both sites and removal of any affected lymph nodes. He said I might not even need immunotherapy...but I thought that sounded too optimistic.

June 27 the pathology report for the shave biopsy came back as melanoma. It said it was an atypical nevis. I took a shower before going to bed and felt something weird when I raised my right arm. I looked an there was a yellow bruise about 1.5 cm in diameter over my right axilla lymph nodes. I touched and felt a lump. Crap. I messaged the surgical oncologist about the lump and sent a photo. He reviewed the information and the new pathology report. He said that the fact that the primary site is an atypical nevis is promising.

Today (June 30) I had a CT/PET scan and am impatiently awaiting the results.

Here are my questions:

1. I looked into the bruising over the lump and found that it may be something called sentinel bruising, which is astronomically rare. I'm talking less than a dozen cases worldwide. Does anyone have experience with this?

2. I live in New Mexico. It's not that I don't trust providers here, but I don't trust them with anything important. It took me over 20 years and multiple surgeries to finally be diagnosed with hip dysplasia (that chapter was supposed to close in mid-July when I had my second hip corrected, but that got postponed due to my diagnosis). I contacted MD Anderson when I got my diagnosis and they requested that I send them all of my records and contact them after my July 8 surgery because they won't review anything until I've stopped receiving treatment from other providers. Does anyone have experience with MD Anderson? What are my odds of being accepted as a patient?

3. This is a tough one. What can I expect going forward?

Thank you guys!

My oncologist recently diagnosed me with adrenal insufficiency and hypothyroidism (resulting from immunotherapy). She wants me to follow up with an endocrinologist, but I cannot get to see them for months. However, my oncologist did go ahead and start me on hydrocortisone twice a day and levothyroxine.

I’ve been reading a lot on the adrenal insufficiency sub, but what I was concerned about is if we are currently on immunotherapy, are we still allowed to stress dose. Do you take more hydrocortisone around the time of your monthly infusion? What about if you have a very stressful event in your life, do you take the stress dose then? Or is it just for when you are physically ill, injured, or having surgery? The reason I’m asking is I am in the middle of a very stressful life event and it seems like the medicine is hardly working- I’m very fatigued.

I called my oncologist to let her know, and she said she’s very concerned because that doesn’t sound right. But after reading a bunch of comments, it sounds like it IS normal to be very fatigued after a high stress event, and people are taking a higher dose to compensate for it.

Hello fellow melahomies! I’m new here, I’ve been lurking since my first ever biopsy came back positive for aggressive malignant melanoma last month and this is my first official post.

WLE was yesterday morning, 14 stitches across my chest from a mole that I’ve had since I was 12 that suddenly turned evil 15 years later (28f) Since I was originally told it was aggressive with unknown staging I assumed the worst. The surgeon yesterday said it seemed it was early enough and suspects it to be stage 1 (won’t get the pathology results and know for sure until 2 weeks).

Great news right! So why am I so depressed today and yesterday after the excision?

I’ve been a ball of anxiety since I got my biopsy results back but now…I just feel hollow and empty? I’ve been exhausted which I read can be due to my body healing from the giant chunk that was removed. I have had mental health struggles in the past but I just did not expect to feel this way! Did anyone or does anyone else experience this? Maybe I just need good sleep!

Hi! I had a WLE of melanoma on my arm a month ago and SLNB 2 weeks ago.
Incision looks great. There’s a small seroma that is shrinking.
However I have some pain/tingling in my inner arm. It’s likely injury to a nerve.
Has anyone else had this? It feels like a rug burn.
Any suggestions to help the discomfort? I ordered sleeves to see if they help.
Thanks!

Hi All,

I had posted a week ago about my stepdad who has stage 4 melanoma and started immunotherapy (opdivo and yerovy) almost 4 weeks ago now.

He was hospitalized last week for a fall and had some complications while in the hospital ( AFIB event).

They were finally able to stabilize him and now he’s in an inpatient rehab to regain his strength. He is SO exhausted and decently confused. Some of the tumors are on his brain dura, scalp, and skull. When they did the MRI at the hospital there was considerable inflammation of the brain, his oncologists (he has two as my parents recently moved) both believe the immunotherapy is working and causing the inflammation. His liver levels were also elevated at the hospital which they noted is common. He also had tumors on his scalp that we could see that are gone.

The oncologists are extremely encouraging and think he has a really good chance of good response since we saw external tumors shrink on his scalp so quickly. I’m almost surprised how positive they seem, given his current state.

Any thoughts on these side effects? And the oncologists response? Anything we should be asking or considering?

I feel so sad for him that he is so confused and fatigued. It’s so hard watching someone you love be not themselves. I want to do anything I can to support him and my mom.

My original post with other details
https://www.reddit.com/r/melahomies/s/iiIEsfjvzw

Had previously posted here during a waiting period but got too nervous and deleted so bear with me.

2 years ago I 37M had a biopsy and a mole excision from my midline chest. .6mm pT1a 0 mitosis diagnosis. Clean margins all good.

Flash forward to a couple months ago I caught a couple of swollen lymph nodes near my armpits. Not huge and every doc I mentioned it was impressive I even found them. They measured out 3x2ishx2ish on ultrasound.

Got some testing done - PET all clear (other than nodes), bloodwork great, feel good generally. But biopsy just came back as a recurrence in both sides. Initial oncologist consult indicated <5% of this happening based on how things were handled and initial diagnosis.

But here we are.

Looking for advice - what can I expect, what questions do I need to ask, how do you mentally/emotionally/logistically manage?

My mom 67yo recently passed away from metastatic melanoma, and I’m trying to understand whether her care followed a typical standard or whether there were avoidable delays. I’m not looking to blame anyone — I just want honest perspectives from people familiar with melanoma care (patients, caregivers, or medical professionals).

Timeline:
Aug 2023: Stage II melanoma on upper back. Surgery removed tumor + lymph nodes (needed a second surgery for remaining infected nodes).
Jan 2025: Completed 1 year of nivolumab immunotherapy.
April/May 2025: Scan clean no any sign of cancer.
Dec 2025: CT found 4.3 cm adrenal mass.
Jan 2025: was referred to an endocrinologist who took many analysis and excluded a thyroid issue
Feb 2026: Biopsy confirmed metastatic melanoma (Stage IV).
Apr 7, 2026: Right adrenalectomy (about 5 weeks after biopsy due to scheduling delays). Initially recovered well.
Early May: Developed abdominal swelling, cough, and weakness.
May 19: Hospitalized locally, treated for suspected infection (no improvement).
May 26–27: Transferred to oncology hospital; very weak. Paracentesis removed ~2.5L fluid (ascites).
Tests showed hepatitis B reactivation → immunotherapy was delayed pending antivirals + gastroenterology clearance, which caused additional days of waiting.
Imaging later showed multiple abdominal metastases and pleural fluid.
PET-CT results also took several days to return and were not marked urgent.
During this time, her condition rapidly worsened (high inflammation, vomiting, severe weakness).
ICU admission followed after sudden deterioration; she was intubated and passed away a few days later. We were not prepared to lose her so soon, and neither was she. That has been the hardest part.
Until her final day, we hoped she would receive at least one dose of immunotherapy or chemotherapy. We know it may not have changed the outcome, but we wish she had at least been given that chance.

What I’m trying to understand:
Is ~1 month wait for adrenal surgery after biopsy considered normal?
Is delaying immunotherapy due to hepatitis B reactivation standard practice?
Do these timelines sound typical in other countries/centers?
Or does this sound like aggressive disease progression vs possible treatment delays?
I understand no one can know if the outcome would have changed. I’m just trying to get realistic perspective from others who have seen similar cases.

One additional detail: my mom had no other major health problems. Aside from the hepatitis B reactivation with a very high viral load, her routine blood tests—including liver function, kidney function, and other standard laboratory tests—were generally normal. She was feeling well before the adrenal surgery, with good energy and quality of life, which is why her rapid decline over the following two months has been so difficult for us to understand.

Thank you!

My father was diagnosed with stage III melanoma in his right side submandibular lymph nodes back in February yet, despite multiple visits and many different attempts, nobody was able to spot a primary cancerous mole anywhere. He had one round of immunotherapy about a month after, which fortunately seemed to work as the tumor was shrinking, and a few weeks ago they surgically removed the affected lymph nodes. There's just so much that's starting to go wrong , though. Not only did the immunotherapy give him recurring liver issues, but the steroids he took to combat that ended up resurfacing a tachycardia problem which he had surgery for. Now, after getting those lymph nodes removed, his blood work shows abnormally high amylase (about 1300), and my parents‘ PCP is worried about some other lower than average values that may point to internal bleeding. Not to mention, we still don't know if the cancer is gone or not. I'm so sorry for venting but there really seems to be no light at the end of the tunnel right now. It feels like every single piece of good news inevitably begets something bad. Has anyone else dealt with a similar cascade of complications?

hi everyone. I’m curious about whether anyone has had their lymph basin traced with a biopsy for an enlarged node (not an slnb after diagnosis)? I’ve had 4 melanomas, 19 WLEs (melanomas and severely dysplastic) and more moderately and mildly atypical than I can count. I’ve got a groin lymph node that’s been enlarged for a few months, didn’t respond to antibiotics, etc. I see a surgeon today re: biopsy. It isn’t really near any of my melanoma sites (unless my body is extra weird). i’m thinking about asking the surgeon about tracing the lymph draining from the sites of my melanomas so that, if the node is positive for melanoma, we will have a better idea if it is distant or regional. any thoughts, feedback, experience? I also think that could help inform whether we’ve missed a melanoma (I have FAMMM so I have a bunch of moles that look atypical and my melanomas have all looked different from each other and not all that scary).

Hi, .......unfortunately I am brand new here. Emergency brain surgery, lung surgery and (in situ) .....skin removed from back also. (all that within 7.5 weeks). Classified as Stage IV.....currently now NED....Immunotherapy is to start (if I choose to) in a month or so.......I am curious if anyone has had 0 side effects from Keytruda/Plembro. On the fence about if I should/shouldn't. Especially because at the moment my health is good. I have read a lot that says some people would regret it to choose to not do the immunotherapy. Sad, scared, worried, and prefer to believe it's all going to be ok. Single Mom here, .....and I have a young child. Worried about severe side effects I keep reading about. Don't want this to consume me. Please do private message me as I'd like that support. A big thank you to those that have read this and choose to reply.

I have had a 1a and my sister had melanoma....so I have a lovely neighbor mid30's, married with two boys. I am a very observant person and she had a visible mole on her clavicle...but it looked

like it was growing a wing on either side. I asked if she got checked out and she said yes and in fact, she got an appt with somebody and they said all is fine. Ok, i have never seen a round brown mole with wings. Not sure if she has a derm or a PCP...not sure what to do.

Well my husband had treatment

First immmudepletion chemo day -5 to day -1

First 2 days rough , no energy nausea. Last 3 not so bad

Cell infusion day 0

Tolerated well, just tired and smelly !! He then smelled for 48 hours, but he could not smell it ! So weird!

Il2 day +1 to +3

First 2 doses minor side effects

3rd dose , more tired and fever

4th dose severe rigors followed by fever and tired and poops. Did not do any more, he declined even tho they said he could still technically do more.

Within 48 hours after was feeling not bad , walking and wanting out.

No major side effects lasted .

6 week scan showed , 5 of his many lung noduls saw small decreased size , while the majority were stable. His main lymph tumor (that was removed at time of resection) does look concerning and can't rule it as scar tissue or disease.

After reading so many horror stories he was thankful he had it not too bad

Next scan in 5 weeks hoping for more decreased lung mets !

Stay positive homies !

After my last post, I have decided to leave reddit. Someone made a comment and it could have sent me into a depression, but it actually just made me angry. I think we are all here to try to find answers and not receive sarcasm . I wish the best for all of you! Be careful on some of the opinions that others give you. Don't let them take your joy !

Hi, i had a biopsy on thursday on a mole on my thigh. the consultant said he obviously can’t confirm melanoma until the biopsy results are back but there is a long wait of around 8 weeks! He said he does highly suspect melanoma and that he thinks it has only spread from the epidermis to the dermis so won’t be too deep. i’m still worried as i get an achy pain under my arms which i know it s probably hormonal (i’m a 48 year old female) and unrelated to my mole. Could the consultant actually be able to tell through examination and his experience that it’s melanoma? it does have a grey veil but he said the veil is thin which is why he doesn’t think it’s deep. Has anyone had a similar experience?
many thanks.

Hey everyone, i recently got diagnosed with melanoma at 20, it was on my sternal notch. The doctor said it is a stage pT1b at 0.8-1.0mm with no ulceration. My doctor recommended a lymph node biopsy and excision to not risk anything, she said 10% chance it spread to my lymph nodes. I opted for the lymph node biopsy and excision and had the surgery yesterday. They removed 2 lymph nodes, one in my armpit and 1 on my neck towards my jaw. I was told there would be some soreness and I could take ibuprofen or Tylenol so that’s what I’ve been doing. Last night on my way home they even gave me an oxy, but it only helped so much. It seems like everything only takes a little bit of the pain away. The majority is the pain in my neck and it hurts to eat or move. I have to have my boyfriend help me get out of bed and help me make food and basically do any tasks. It really hurts to get up and walk around so I’m basically laying in bed not moving and miserable. When I’m laying like this the pain is very minimal and minor. The excision spot doesn’t hurt to bad and my armpit is sore but manageable. Did anyone else experience pain this bad? I feel like I’m being dramatic.