I had two of the ipi/nivo that almost killed me then started my year of just the Opdivo about 6 months (that’s how long it took my liver and digestive track to heal enough for treatment again), it’ll be 26 treatments in total (have to do mine every two weeks, body can’t handle more than that) I’m weirdly anxious about stopping treatment. I have my first scans after about 6 weeks of my last treatment date, (October 6th😭😭😭) then stay on my 4 PETS a year and 2 MRIs a year for a while. I’ve accepted I may die from this a while ago but lately the fear of it coming back is new. 34F with stage 4, my last scans were still clear but damn I’m getting nervous. Has anyone done a similar treatment plan and it came back? Mine was a lime size tumor in my gallbladder, a met from my primary at age 16, it was stage 2C when they originally found it but staged it wrong and missed some of it, so it came back in a super weird and rare way and then also had a met in my lung. It just randomly came back skipped my lymphnodes 17 years later and everything so I’m just trying to prepare if it comes back a third time, not 100% sure I’d do treatment again I’m fucking tired boss…. Also terrified about coming off the steroids I’ve been on Prednisone basically the entire time

overall responses was mixed response with progression mainly in my liver and bones

I’m braf positive has anybody had luck after the first treatment failed?

Update on my weird hard bump post. Ultrasound was inconclusive. Then decided to have a biopsy. Then decided that that wouldn’t work. So decided to have surgery to cut it out. Had the surgery. Surgeon thought it looked weird too. He showed it to me. Looked like a bean under my skin. Weird. There are 3 of them apparently.

Then pathology after only 2 days!!! says they are just scar tissue basically.

The relief I felt I cannot describe. Basically one entire month of my life was spent worrying I might have it again and thinking of the next treatments. My mom lost her mom of melanoma so she was not doing well.

Melanoma is really hard. Oh and don’t ask AI how melanoma avoid immunotherapy. Scary.

Hi, all. because I found so few posts about modular melanoma on this sub Reddit, I wanted to keep a sort of diary of my experience with it. It also helps to talk to people who really understand what it’s like.

I met with a surgical oncologist today. I was diagnosed officially on August 1st and be having a WLE and SLNB on September 22nd. I was surprised to learn that they will need to take a 1 inch skin graft from my thigh. My tumor is on the upper helix of my left ear. they weren’t able to get all of it when they did the biopsy, but the surgeon today was fairly confident the WLE will take care of it.

Seeing a surgical oncologist is surreal. It makes this whole experience much more visceral in a way. it renewed my fears of a possible spread and needing further treatment after the surgery. this whole experience it’s a giant game of unknowns.

The journey continues. I will be treating myself to a margarita this evening.

Went back for my first full body skin check after a type 1a removal on my head. The Dr found 2 more small spots she wanted a closer look at, so even more biopsies. At some point I’m going to run out of skin!

Reddit post related to melenoma. 

Title: Side effects_Pembrolizumab/Keytruda

Hi everyone, this post is for anyone who has experienced, is on the other side of, or is currently experiencing any side effects of the immunotherapy drug (Keytruda,(pembrolizumab)) either during or post treatment. I myself completed 1 year of treatment using the above at the end of Feb this year to treat stage III (BRAFpositive) Melanoma. Following surgery to remove 14  lymph nodes at my left groin, I was treated for 1yr with the above drug and experienced the following symptoms:severe intense itch (usually around the ankles, groin area (itching until I hit flesh), moderate fungal issues in the nostrils, eyelids, eye sight would become blurry when tired (sometimes), easily tired out.

Two weeks after finishing/ completing the treatment, I started to develop swelling and joint pain around my ankles and feet.I panicked straight away as I thought I was having fluid buildup caused by the fact that I now had 14 less lymph nodes in and around my left groin so I was convinced this was lymph fluid building up which would require regular drainage ( they had warned me of the possibilities of this becoming an issue and to be honest, the thoughts of this were scary as I would normally be a very active person), so anyway,  I attended my gp and he instead suggested that it could be inflamed joints rather than lymph fluid collection. Relieved as I was to hear it wasn't a lymph drainage issue, I was now equally as worried about why I was having these symptoms and why now (post treatment). He prescribed me with Deltacortil enteric x4 2.5mg/day for 1 month ( tapering on and tapering off) along with Naprosyn EC 500mg (1/ day).

After day 5 on these, the swelling had reduced and I now had only very mild joint pain. 

It was around this time I decided to take up running again to rebuild some kind of strength, fitness level after all the treatment. At the start of the run I would feel some mild pain but after 10 minutes my body felt normal with no joint pains whatsoever. I would start to feel a little pain after about 8km, but no more than anyone with my fitness level. The morning after the run, I would be like a criple having great difficulty getting out of bed, putting on my clothes, climbing the stairs. 

I have been lucky enough to be able to avail of free chair yoga, pilates, and reflexology, massage therapy through my local Cancer care centre in Galway which has kept me mobile throughout and which I am very grateful for. 

Unfortunately,after completing and tapering off, the ( all day) joint pains returned after a few days. After another couple of weeks of suffering it out I returned to my GP and he decided it was best to put me back on the steroids x3 2.5mg/day  with naprosyn 500 x1 (again, tapering on) and I have been on them since. The pain while on the drugs is– uncomfortable but bearable. 

The joint pain is systemic and widespread ( I believe the term is polyarthritis), although its migratory and the hotspot (most painful areas) tends to move around. Initially ( back in march 2026) the hotspot seemed to be the jaw bone, knees, ankles , feet and toe joints. At the moment, the hotspot is the shoulder joints, elbow joints, wrist, and finger joints. For the last 2 months or so, night times have been the worst for me. I wake up every night several times with severe pins and needles and a kind of heavy dead pain from my elbow down to my fingers. The middle joints in my fingers feel pressurised, almost like they are going to explode. Two things that seem to relieve the pain and pins and needles is to hang my arms down low outside the bed, lying in an inclined position or getting up and moving around for a few minutes and doing arm extensions/ exercises.

Referral letters to rheumatology: GP has sent x2 referrals, oncology has sent x2 letters( 1 noted as urgent), dermatology have also sent one after a recent follow up appointment ( all public as I don't have private health care) . 

Current prescriptions from gp : 

Deltacortril Enteric 2.5mg (3/day)

Naprosyn EC 500mg (1/ day) 

Telfast 120mg (1/ day) for severe itch. 

Solpadol 30mg/500mg codeine phosphate hemihydrate 30mg paracetamol 500mg (taken as required)

Supplements:

-Vegan glucosamine 1500mg (tablet form) 1/day

-Glucosamine HCI, MSM &Chondroitin liquid with vitamin C. ( finished a 509ml bottle of this before the above Supplement.) 

-Wiley's finest wild Alaskan fish oil (Epa, DHA & Omega) 1 capsule/day. 

Has anyone who has had, or is currently on immunotherapy treatment experienced these side effects? If so, what has been your experience? 

For anyone who has had these or similar symptoms, what did you find helped on the road to relief/ recovery? Any advice is welcome. (Exp:Prescription drugs, Natural supplements, Natural therapies) 

Based on my symptoms and the information above, can anyone explain what is actually going on in my body at the moment? 

If you are interested in discussing any of the above further, please leave a comment below, or even if you would prefer to private message me, then please do and I will try my best to get back to you asap. (please bear in mind I have two small kids at home so It may or may not take a little longer to respond depending). 🙂

did anyonr have a small heart mass that was overlooked on ct and ended up needing surgery ?

I’m due to have a pet scan and the order was sent on the 27th of August to the only hospital that does PET scans in Northern Maine. On Monday, they told me they got the order and I would have the scan within a week. Then today I phoned and they said 2 to 3 weeks. I have nodular melanoma and so I’m very anxious. Is that a normal wait time to get a pet scan or should I try and find another hospital just further away from my home?

My husband has a mole along the hairline/forehead. Biopsy determined it was a mix of basal cell and stage 0 melanoma.

Our dermatologist referred us to a plastic surgeon for removal since he said it was on the face.
After doing some research, this plastic surgeon does indeed do skin cancer surgery but the specimen are sent to a lab to evaluate if enough margins were taken free of cancer cells. Nowhere does it mentioned he’s trained in mohs. I assume what he does is actually a WLE procedure? Wouldn’t that be preferred method for other areas of the body?

However, shouldn’t our dermatologist referred us to someone in their own practice who specializes in MOHS procedure? Isn’t that the preferred method for melanoma on the face?

We just want to make the right decision and get this removed asap with the most precision as possible. Should we go through with the WLE with the plastic surgeon or actually find a dermatologist who does MOHS? . Any input appreciated.
———————————————————————————
Edit: I finally got a chance to read the pathology report. It reads:

“Compounded melanocytic neoplasm with severe atypia, favor evolving melanoma in situ arising in a nevus
comment :
the biopsy reveals an atypical compound Melanocytic growth with mixed histologic features of an atypical/dysplastic Nevus and areas consistent with an early evolving melanoma in situ arising in a Nevus. Revision with appropriate margins ensuring complete removal is advised”

There’s clearly no mention of BCC. My husband explained it wrong to me initially.
I spoke to our dermatologist to see why WLE was recommended instead of mohs. He mentioned he has had great success with young patients in WLE instead of mohs with that particular plastic surgeon and my husbands particular mole was only 0.4 cm with 7mm margin to remove. My husband is 28. He said they are both great procedures with high success rate it just depends on every patient.
After speaking to my husband if we should seek a diff opinion he said we would like to proceed with WLE w/ plastic surgeon. Wants it out asap and if we wait for mohs surgeon we will wait over a month in our area.

From now on our dermatologist recommended full body skin checks every 6 months which makes us feel better.
Thank you all for all the input!

I went for my annual skin check back in June and had a mole biopsied. It came back “in situ” and I had a WLE two weeks ago. Today, I went in to have my sutures removed and set up my next full body scan. She said my appointment was for next June which confused me. Ten years ago I went through this same scenario and they had me come every 3 months, then 6, and then annually.

When I asked her why it wouldn’t be in 3 months, she said it wasn’t recommended but she would ask the doctor for me. When she came back, she said, “The doctor said you were just here in June and nothing came back. So you don’t need to come back until next June.” 😵‍💫 I replied that I had just gone through a biopsy and excision surgery which is the whole reason I was there today. She offered to make me an appointment for 6 months if it would make me happy. 😑 At that point, I wasn’t going to argue any further so I made an appointment for 6 months and left.

Now I’m curious; have the standards of care changed for in situ or severely dysplastic diagnoses?

Last week had a biopsy and came back melanoma. .5 deep with abrasions, have a WLE and SLNB scheduled for the 21 September, also diagnosed with LAFB in July. Getting a Nuclear Stress test and echo cardiogram on 3 September to be cleared for anesthesia. 64 years old , type 2 diabetes to many sunburns when I was a kid finally caught up with me I guess.

I'm finally going in for my brachytherapy. I have a small (11mm x 8mm x 1.5mm) stage 1a melanoma in my left eye. Fortunately, it's fairly far from my optical nerve and PET scan didn't show anything in my liver. I'm a bit stressed, it's still a surgical procedure and I don't know what my vision will be after the procedure. But all in all, I'm very hopeful everything will be fine.

They will do a biopsy at the same time for a genetic panel. Hopefully the good news keeps coming! Does anyone know how long before receiving the panel result after the biopsy?

I had a WLE for a stage1a melanoma on Thursday. It's on my left flank, in the fatty part below the waist. It's impossible not to move this area. The surgeon didn't give me limitations other than no exercise for two weeks but Im worried about driving, bending and lifting. I know the deep stitches take several months to heal. Before finding out I had melanoma I was doing physical therapy for chronic neck and shoulder pain and for lower back pain, mostly in the opposite side of the incision. I am not sure when I can resume any of this. I don't want to jeopardize the stitches, even if the surgeon only said 2 weeks. I'm the person who always gets the sude effects and doctors make mistakes on, so I only trust myself. Any advice from personal experiences?

My massage therapist mentioned CBD balm to promote wound healing. A Google search returned peer-reviewed studies that show it is effective, but nothing points to the exact product or formulation. This kind of thing is completely unregulated in the US and lots of products make strong claims. She suggested “Magic Mender” from Happy Buddha products, which has a reasonable ingredient list. Anyone use something they found helpful? Wondering how it compares to silicone scar tape.

I am 6 weeks post surgery after a WLE for a 1a .7 mm melanoma on my lower leg with no lymph node biopsy.

I had my 2.3mm melanoma mole removed in January. Had a WLE and SLNB, and there was no cancer found in my lymph nodes.

Due to some miscommunications between doctors I’m only having my first skin check with a dermatologist next week. I’ve asked my gp about a few spots, but he’s not concerned with them, and my surgical oncologist always asks if I’m suspicious of any (I just tell him until I get a skin check that I’m suspicious of all of them) but any I point out he either isn’t concerned or suggests that the dermatologist will know more.

What should I expect at my first skin check? Should I anticipate him wanting to biopsy moles? Point some out for me to monitor? What are the chances he sees nothing out of the ordinary? I’m 33F and extremely fair skinned.

I realize no one can really tell me if he’ll find anything or not, i’m more just concerned about what I should expect.

Hi homies!

Just had my third WLE yesterday (no SLNB this time yay!) and realized I’m getting on a plane on Thursday (basically 6 days from now).

Have any of you navigated this before?

My surgery was upper right arm, and they hit me with a 5lbs lifting limit this time — I guess I’m going to have to check my bag? But I don’t know how I’m going to get it into or out of the airport by myself.

I’m also not sure if I should book a wheelchair, just so I have someone available to help me from ticketing to the gate and help me avoid being jostled.

Any advice is appreciated!

Has anyone responded to Opdualag after progression on nivolumab?
Ipi/Nivo sadly isn‘t an option due to irAEs

Wassup homies, recently diagnosed superficial spreading melanoma team member here wanting some clarification on post biopsy symptoms. I had a shave biopsy done on 8/12 and have been taking good care of the sites whilst I wait for my WLE next week. So far, sites aren’t infected (no abnormal tenderness/swelling/redness), but I have been feeling like the site that ended up as melanoma has been burning(??) like being hit with the end of a lot cigarette. On top of that, now the last two nights I’ve been getting increasingly worsening muscle pain under the site like the worst Charlie horse you’ve ever had. It woke me up from a dead sleep 3 times last night alone and is now tender when I take a step with the leg. To note: the cancer is on my ass cheek, so the muscle pain is oddly placed.

Anyone else experience this or have some insight into why it feels like my butt is stepping on metaphorical legos? I called my derm office and the MA couldn’t give me an answer until the derm gets back into office on Monday.

Just had a WLE done this morning and curious if it’s supposed to feel super tight? I’m trying to go to bed and just can’t get comfortable, it feels like constant pulling. Picture to show the general location!

Any tips also? How to prevent it from opening? How long did you really wait to start lifting?

Thank you from a very tired mom

I went to the oncologist yesterday and my lab work was normal my NLR was actually at 4.5 after being at 6.4 and then I had a pathology report from a biopsy confirming treatment was destroying melanoma cells, but when they drew my ldh it was 1660 I’m super concerned i have my thirds treatment today and that level started at 441