r/Melanoma

In 2023, I had a mole removed, by September 2024 it had turned metastatic spreading to my spine. I responded well to the Braftovi and Mektovi treatment and now there are no signs of cancer uptake from my most recent PET.

The fatigue is still unreal though.

I blog about my life and travels at www.deliberatelifeandtravel.com.

I'm wondering if anyone has any travel tips.

How do you plan trips?

How do you manage to prepare for different destinations?

How do you balance treatment with time away?

Are there other insights you can give me?

I feel like I'm missing something and I want this project to be successful. I want to inspire others that they can do it (see the world) too.

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 dad (58) recently was diagnosed with stage 4 melanoma - has had it for years but about 5 months ago it spread has a large tumor in leg that broke his femur. He also has CLL for a while they haven’t treated but he’s currently doing immunotherapy for Melanoma. Been about 3 months not sure it’s working had a PET scan and results are about the same.

My question is mainly around ascites - he’s been getting a lot drained each week 5-7 liters and that’s causing him immense discomfort - he’s got a large mass on his peritoneum they’re going to do a biopsy cause now they’re not sure this is from Melanoma. Anyone had family or experienced ascites from melanoma and see this go down/eliminated after a while? The ascites and mass in his omentum/peritoneum seems pretty grim so just trying to get an understanding. Obviously the next biopsy should be more helpful.

2021 - Initial Diagnosis

Diagnosed with melanoma on my left ankle.
Scans showed it had spread to the lymph nodes in my groin (Stage III melanoma).
Underwent surgery to remove the melanoma and affected lymph nodes.
Started 12 months of adjuvant immunotherapy (Pembrolizumab).

2021-2025 - Cancer Free

Completed immunotherapy.
Regular follow-up appointments and scans showed no evidence of disease.
Remained cancer free for almost five years.

December 2025 - Recurrence

New melanoma deposit found in my left calf.
Underwent surgery to remove the tumour.
Required a skin graft from my thigh.
Recovery complicated by swelling, numbness and persistent lymphatic leakage.

February 2026 - Hospital Admission

Developed severe chest pain and difficulty breathing.
Admitted to hospital.
CT scan showed fluid around my lung and a 7 mm lung nodule.
Initially treated as pleurisy/chest infection with antibiotics and oxygen.

March 2026 - Stage IV Diagnosis

Further investigations confirmed metastatic melanoma.
Diagnosed with Stage IV melanoma.
Cancer identified in:
Lung
Hip/iliac crest
Sternum
Shoulder blade/scapula
Additional bone lesions
A liver lesion was identified later.

March 2026 - Immunotherapy Begins

Started combination immunotherapy with Ipilimumab and Nivolumab.
Planned treatment:
Four induction cycles every three weeks.
Follow-up PET scan.
Maintenance Nivolumab if treatment successful.

March-April 2026 - Severe Immune Response

During treatment I developed significant immune-related side effects, including:
Extreme fatigue
High fevers
Violent rigors
Muscle and joint pain
Nausea and vomiting
Loss of appetite
Insomnia
Dizziness
Dry mouth (xerostomia)
Mouth ulcers
Oral thrush
Visual disturbances
Temperature regulation problems

Following one of my treatments, I became acutely unwell and was admitted to hospital. My oncology team believed I had experienced Cytokine Release Syndrome (CRS**)**, an inflammatory reaction caused by my immune system becoming highly activated in response to immunotherapy. I required hospital treatment and close monitoring until the reaction settled.

May 2026 - Immunotherapy Hepatitis

Routine blood tests showed significantly raised liver function tests.
Diagnosed with immune-mediated hepatitis caused by immunotherapy.
Fourth treatment delayed while my liver recovered.

June 2026 - Fourth Cycle Completed

Liver function improved sufficiently to complete the fourth and final induction cycle.

June 2026 - PET Scan Results

Follow-up PET scan showed a complete metabolic response.
No evidence of active melanoma anywhere in my body.
Although I remain classified as Stage IV because the melanoma had previously spread, there is currently no active cancer visible on PET imaging.

Current Position

Stage IV melanoma with a complete metabolic response.
Ongoing monitoring with blood tests and PET/CT scans.
Managing long-term immunotherapy side effects, particularly dry mouth and fatigue.

I am posting this full journey in the hope that somebody in my position sees it and feels optimistic. Some of the side effects were rough, but from being diagnosed as Stage IV to being given the news of NED makes every side effect worthwhile. With my first child being born next month, I feel genuine joy for the first time in a while. Good luck to everyone. Fuck cancer.

Diagnosis of stage 1a melanoma on my torso. was getting BCC removed and made a joke about a mole i had all my life as slow growing melanoma. derm was young and thus i think panicked and biopsy it. more experienced derm doc a year before said there was nothing to worry about. 100% got lucky. had the WLE two weeks ago with about 20 staples. 100% they dont tell you how painful it is with the tension. had staples removed a week ago and that night the whole wound opened up. from what i understand this is typical especially for the torso. definitely going to take 4 to 6 weeks to heal. called secondary intention healing. from inside out. anyine experienced this? very painful at times.

https://www.reddit.com/r/skincancer/s/B5z7ivbt3Y

I was diagnosed with a pT1b on the arch of my left foot. It was a mole that had been there my whole life and a few months ago I noticed the color change ever so slightly. The pathology took 2 months to get back. Having WLE and a sentinal lymph node biopsy tomorrow followed by a skin graft in 10 days. Anyone else have experience with a WLE near the bottom of the foot? Also freaked out that it spread during the time it took to get the initial biopsy results.

I've had melanoma now 4 times. Always in the same place. Stage 3c. This time it spread to my breast tissue. I had a 4 cm tumor in my axilla chest wall area and over 20 tumors in my breast. 8 of them were positive for melanoma. I had a mastectomy of the left beast and a wide excision for the 4th time. Just wondering if anyone else has had a mastectomy because of melanoma.

I had Melanoma Stage 1 removed twice on my leg a few months ago. No further therapy but a huge ugly scar, because it healed badly.

I was 21 and the mole was not new nor particularly ugly (and was dismissed by the first derm), no skin cancer history in the family, I don’t live in a very sunny country, I never really spent time in the sun or tanning because I’m prone to sunstroke, very rarely had sunburns as a child and never a bad one, always had 50 sunscreen on and reapplied, had a hat, long clothes…

I feel like i already did everything right before.
I do have a chronic inflammatory disease, so i don’t know it that played a role, but I feel like this is taking even more quality of life away and is stressing me out a lot, because it’s making it so much harder to do things with friends and get out of the house when the UV is so high.

I feel very alone with the diagnosis because I was always careful and the annoying friend sunscreening every one around me so I really don’t get how that is even POSSIBLE at 21/22.
Are there other causes of melanoma ?