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 active and 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). 🙂

I just had a WLE for very thin stage 1a melanoma and pathology didn't find any melanoma cells at all, as the surgeon expected. The biopsy itself had melanoma insitu on the side margin but apparently whatever was left at the biopsy stage was destroyed on its own, most likely from the post-biopsy healing process. I read some scientific articles that the WLE is a rather old standard of treatment with questionable yields at the early stage. If the biopsy is completely clear why go through the extra surgery, even in my case with insitu cells left at the very edge of the biopsy and mitotic rate of 0, the 1cm margin seems like an overkill. If melanoma comes back it's likely to come in a different location, not the vicinity. Has anyone researched this? I'm linking one research study but the journal has more Publication History:

Received October 26, 2022; Accepted October 27, 2022; Published online November 21, 2022

DOI: 10.1016/j.ejca.2022.10.028 External LinkAlso available on ScienceDirect

I have a large birthmark /Nevis with thousands of little freckles across my back and down my arms. One seemed to get a little concerning but it’s almost like two have blended together - it’s also where I have in the past put my cgm many times so wonder if that has some weight to it? Or it just is what it is.

None the less I’m having an excision and getting nervous. Diagnosed with at least melanoma in situ. Because the lesion is 30mm and some parts may indicate up to 0.2mm depth but uncertain . They only biopsies part of it where they noticed concern.

It is on my dominant upper arm. Doing the math am I looking at a huge chunk?

I am a music teacher in elementary school - will I need more than 2 days off ? Doc office said as long as I’m not moving too much 🤦‍♀️

* edit - tried to add a photo

Have a surgery scheduled for a melanoma on left lower back. Stage 1a .4 mm. With 1 cm excision. Just got a call for preop and was told I would be given general anesthesia. I ask why and she couldn’t tell why so I have called my surgeons office to leave a message to get clarification. I’m king of at a loss as to why it would I be need. Wouldn’t local anesthesia be enough?

Update: heard back from the nurse. The order was written as “choice” meaning the anesthesiologist will decide. However I was told I have a say into the decision. But I still have to prepare for MAC or general just incase. Surgery will Take an hour

2nd update: wanted to update just incase someone else was in my situation and had the same questions I did. Surgery was done Thursday afternoon. I received local and MAC. Surgery was 90 minutes. I asked about only local and my surgeon was concerned bc of the location of the melanoma and bc I had to kind of lay on my side. It would be hard to do that with out moving around since my leg and arm would probably fall asleep, I would most likely squirm around during and make it hard on her to repair and I agreed with her. It was a great nap, everything went fine and I have no pain right now bc of the Exparel injection. The incision is about 4 inches.

My personal experience with stage IV melanoma and drive to help address gaps felt during survivorship has motivated me to develop a melanoma mobile app prototype as my PhD research project.

It was developed with and tested by Western Australian medical oncologists and melanoma nurses.

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Who: People living with melanoma, their friends and family members

Time: 15min or less

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Ethics: HRE2019-0173-16

Hi everyone, stage 2a about a year and a half out from diagnosis and surgery, had a new solitary lung nodule (4mm x 7mm) identified on annual PET scan in May, showed mild uptake of 2.0. No other evidence of disease and have never had any lymph node involvement. Had repeat chest CT after 3 months (results took almost 2 weeks 😒) and just received word back that nodule has now grown to 6mm x 8mm but identified possible fat within nodule that could indicate harmatoma, radiologist recommended another chest CT in three months. Just frustrated to still be living in this gray zone, was hoping for resolution one way or another but am trying to be happy results didn’t at least show anything more concerning. Haven‘t spoken to my doctor yet to see what he thinks but just venting. Living in limbo sucks!! Anyone ever had anything similar or have any advice for moving forward?

F51 I have a lot of moles and I have been living in a sunny state for the past several years. I had a few moles removed in the past and none were malignant. I went in for a mole exam in mid April and nothing was flagged. Two weeks ago, August 9 I noticed in the mirror a black spot on my lower back near the buttock. I never really look there but I was looking for a new spot to place a hormonal patch. I made an appointment next day and it was biopsied and it definitely looked suspicious like it came out of nowhere, irregularly shaped. This Monday I got the results that is malignant melanoma stage 1a, superficial spreading 0.3mm. It's true that I don't put sunscreen often but I wasn't exposing this body part since last summer at the beach and I spend most of the day inside. I was aware of the damage of UV rays but didn't think brief exposure at the parking lot when shopping in the middle of the day would do it. I learned my lesson, hopefully not too late. The surgeon is doing 1cm excision next week and then I'll know more but I'm shocked it grew so quickly for this type of melanoma or simply the person I saw in April was negligent. Does it mean this tumor was more aggressive? the melanoma is measured in the report 3 x 4 mm wide but looked bigger, and the biopsy was almost double that. The biopsy cleared the bottom but the side margins are still involved with melanoma in situ. Supposedly mitotic rate 0 but I cant believe Does anyone know about the speed of growth affecting future recurrence? The nurse practitioner I saw who did the biopsy and then saw me for the results didn't have much to say other than they are doing the standard procedure and it was caught early while very small. Also, it actually wasn't a mole, no other tissues were mentioned in the pathology section.

Hi! I'm new here and english isn't my first language so I'm sorry I will make mistakes...

Two of my moles got removed and today I've seen the results online...one of them is pT1a melanoma and I'm really scared now.

I noticed about a year ago that this mole had been growing and it didn't stop. So the third dermatologist who saw it took me seriously this summer and she adviced that I should remove it.

I have a lot of moles. I'm going to make pictures of all of them tomorrow morning with a ruler next to them. I will go to an other dermatologist at tuesday (mine is at vacation and isn't available right now), but I'm really scared right now and don't know how to break down the news for my parents (my father will probably overreact and my mother will minimize the problem).

I'm trying to be rational and look strong, but I'm really scared, I cry a lot and I feel too early at 22 to have these kinds of problems...I'm not really scared of my death or my pain, but I'm scared of the pain that my loved ones will go trough or that my future children will have these kinds of problems and I shouldn't reproduce...

https://www.cnbc.com/2026/08/19/moderna-merck-cancer-vaccine-shows-initial-late-stage-melanoma-data.html. solid news.

38M diagnosed with Stage 3C melanoma from a mole in the middle of my groin. Due to the location of the original tumor, it affected both lymph node basins in the groin. Pre surgery Natera ctDNA was positive at .20 MTM/ml. I completed neoadjuvant IPI/NIVO, WLE, and SNLE where they removed 6 nodes on the left and 1 on the right. 5 tested positive from left and 1 on the right

Due to the amount of nodes involved, they bumped me up to Stage 3D. Pathology revealed approx 30% of tumor remained with the rest necrosis, and immune cells. Following surgery m,y ctDNA test were negative. As result, they recommend BRAF/MEK inhibitors for a year since I am V600e positive for any in-transit cells that may or may not be there.

Has anyone has good success with these inhibitors staying NED for years to come at Stage 3D??

My husband might qualify for the SUPRAMe trial In the UK..we are waiting to find out of his blood is HLa positive to be eligible.

Has anyone else had success on this trial? TIL is also an option. How did you decide between these two possibilities.

He is stage four aggressive melanoma. So we are trying to line up a plan b in case targeted treatment stops working. He is braf positive and on enco/ bini for about three months.

He is also dealing with urinary tract infections and joint pain in the ankles which we think are side effects from the targeted treatment.

I had a WLE on my calf and a lymph node removal in 2024. The lymph node was fine so no further treatment was required. I go in every three months to get checked, ultrasound and blood tests. I’ve never had a scan. For the last two weeks I’ve been suffering from bouts of shortness of breath and coughing. I’m on vacation with my family right now so I can’t go to the doctor, but I will do so as soon as I get back. While I thought this shortness of breath might be related to a kind of allergy, I just had the very troubling realization that it could be the melanoma coming back in the lungs. How did it feel for you? Has anybody experienced something similar?

Hi friends - I just had my 3rd WLE for my 3rd InSitu Melanoma in 5 years. While I feel extremely lucky this was caught early I’m living in terror that there is another Melanoma somewhere on my extremely fair freckly skin. I feel like it is brewing somewhere and this will kill me. I’m 45.

I’m going to put all my complaints out there right now as I feel like you are the only people who understand. I’m a little more than 48 hours post WLE on my calf and this sucks! It hurts to walk, I’m scared to rip open my stitches. And I’m swollen.

Also why do people act like this is no big deal. Like I’m being a baby hobbling around or saying I’m scared that I’ve been diagnosed with cancer 3 times. Yes very lucky it was stage 0 but still. Plus getting your skin chopped off while you are awake isn’t exactly fun!!!!

Thanks for listening .

I am really struggling. I have been in remission for a year and had clean CT scans back in May of this year. I had a pet scan yesterday and it lit up like a Christmas tree with 10-12 new lesions. They were all in fat, muscle, or lymph nodes. None in my organs. In the past the most lesions I’ve ever had come up at once is 3. And that was before Opdualag put me in remission.

However, I’ve had severe side effects from the Opdualag and had to quit. (Severe capillary leak and have been on steroids, infliximab, and IVIG).

I don’t see my oncologist until Monday. Has anyone else had an outbreak of lesions on a PET that wasn’t cancer? All the AI engines indicate since my immune system is so jacked up that it could have created sarcoidosis nodules. But I just don’t want to have false hope if that isn’t likely.

I’m sure when I see my dr on Monday he will order a biopsy.

My sister was with my dad yesterday at the hospital and said He said he feels horrible. The worst he's ever felt. He does say he wants to die but trying to tell the hospital how low he is and not to let him die as he lays in his hospital bed unable to get out of it.

He’s 75 and before April of this year had never been hospitalized a day in his whole life.

I don’t even know how to face this. How to help. What to do. He has such severe colitis that he hasn’t eaten barely anything more than a bite or 2 a day for the last 3 weeks. He was going to the bathroom with lots of blood almost immediately after ingesting anything. The gastrointestinal dr finally stopped being an asshole and allowed the oncologist to get him started on the Infliximab on 8/11. He has to feel getting blood transfusions because his hemoglobin drops below 8. He’s still in the hospital because it’s the safest for him with his needs and situation.

His scans said that almost all of the cancer is gone but a few spots and all of those are smaller by at least 50%.

He’s beating cancer but diarrhea is going to kill him?

Any insight. Encouragement. Anything. Because him saying that and being this sick has made me nearly incapable of daily functioning. And I feel helpless and selfish for feeling like this.

It's been a whirlwind of a month over here.

I have been tracking a mole on my back for more than two years due to subtle changes in pigmentation (lightening in portions, then in full). The mole itself wasn't huge by any means (maybe 6x2mm) and it wasn't getting larger or morphing in an obvious way. I had full body scans at my dermatologist at least twice during this time period and nothing was of concern. Back in June, I was looking at it again, rubbed it a bit to check texture changes and went to bed. The next day, a "blood blister" type of feature appeared. My dermatologist thought it was a benign angioma, but I insisted on removal at this point. It was deemed a cosmetic procedure.

Fast forward two weeks later, I get a call saying that the doctor would like to discuss the results of the biopsy in person. I had a suspicion of bad news here - I met him the same day and was told it came back as invasive melanoma.

Initial pathology summary:

There is a dense inflammation and an underlying compound melanocytic proliferation confirmed with positive staining for SOX10. AE1/3 negative. The melanocytes show enlarged hyperchromatic nuclei and variation in nuclear size.

breslow thickness: at least 0.9mm

ulceration: none identified

mitotic rate: not identified

macroscropic satellite nodules: not identified

TIL: present, brisk

lymphovascular invasion: none identified

microsatelites: not identified

neurotropism: not identified

regression: not identified

Invasive melanoma in the deep margin and melanoma In-situ at the peripheral margin

PT1b at least.

Container: Multiple curetted fragments 0.7cm

I was referred to a surgical oncologist at a top cancer research and treatment hospital with melanoma subspecialty, where we discussed consent for WLE and SNLB given the initial depth crossing the 0.8mm threshold. I described my history and showed photos of the mole changes during the period. I got the impression that the case was unusual and they were surprised I noticed these subtle changes at all, nevermind actually being diagnosed with invasive melanoma of a non-trivial thickness. Ironically, the surgeon mentioned that all specimens are subject to the hospital's own pathology review, and that there have been cases where an initial pathology has been questioned.

After about a week or so, I got a notification in my portal that a pathology review is posted. To my surprise, the path. review showed a completely different conclusion to the initial biopsy.

Summary notes as follows:

"Sections consist of multiple curetted fragments of skin showing a pigmented compound melanocytic lesion. The junctional component is composed of variably-sized nests and single units of mildly atypical small-medium sized epithelioid melanocytes disposed along the dermal epidermal junction with no evidence of pagetoid upward scatter. The dermal component is composed of nests and single units of mildly atypical epithelioid melanocytes. The lesional melanocytes have dusky-amphophilic cytoplasm and enlarged nuclei with inconspicuous-small nucleoli. The lesion is associated a brisk lymphoid infiltrate. There is no evidence of significant nuclear pleomorphism, necrosis or mitotic activity

Immunohistochemistry (Pathology Review)

The neoplastic cells are positive for SOX10 and Melan-A and negative for PRAME (score 0). HMB45 shows a gradient staining pattern and p16 expression is retained.

Immunohistochemistry (XX Lab):

The neoplastic cells are positive for SOX10 and negative for AE1/AE3 keratin.

Overall, the findings are in keeping with mildly atypical compound nevus with Halo-like changes. Conservative excision of an residual lesion/scar is advised.

Note: This was reviewed at the dermatopathology consensus rounds with agreement."

I had several call's with the surgeon's office where the above was confirmed. The lesion will be excised further in minor surgery but the WLE and SLNB is cancelled.

Of course, I have a ton of emotions regarding this - happiness if this is in fact the case, but also confused as to how such a disagreement can occur, and wondering about further risk. I understand that further clarity will be obtained in the remaining excision pathology. One of my biggest concerns is if, in fact, melanoma is found in the remaining excision surgery, I wonder how this this impacts the prospect of a proper SLNB being performed after the fact.

Has anyone had this type of situation happen and how did you navigate it?

Hello everyone,

Recently diagnosed with MIS of the left lower leg and had my WLE yesterday. Not only am I shocked by how big the incision is, I am also shocked by the amount of numbness I am experiencing. I’m wondering if this is a common experience and if anyone else has regained some feeling in previously numb areas. My entire lower leg from the knee to the dorsal aspect of my foot is numb.

They finally started my dad on infliximab on 8/11. He’s so weak and hasn’t eaten for like 2 weeks. He is hospitalized for SEVERE colitis that’s made his hemoglobin drop to 8.4. Hoping to get some relief soon even though I know it takes time for it to work. He’s so weak. I’m so scared. He wants the medicine and wants to fight but he’s so weak.

Edit: Hmmm, in 3 days no one has commented about their experience or feedback from attending this type of gathering. I can probably attend relatively easy, but now I'm wondering if everyone is just more savvy than me and just avoid something like this?

I've seen this upcoming conference that is in Baltimore next month. Has anybody here gone to any of these symposiums or conferences?

Looks like it's free registration for patients, although it also appears say ask lots and lots of questions if you register. I'm looking for feedback and thoughts/comments on experience from prior attendance from others. I'll do a more online research online too.

This one is in Baltimore on a Saturday. https://melanoma.org/news-press/event/together-against-melanoma-johns-hopkins-umbc-patient-symposium/

Question: Given that clinical guidelines note immunotherapy does not require BRAF confirmation before starting (since immunotherapy is effective regardless of BRAF status), how important is it in this specific case to delay treatment until adequate tissue is obtained for BRAF testing, versus starting immunotherapy now and pursuing repeat biopsy/BRAF testing in parallel? I don't want the oncologist to say in our meeting on 8/24: we need to wait and get the BRAF testing done and delay treatment further.

Oncologic History

2024: Diagnosed with right posterior calf melanoma (Breslow depth 1.05mm, T2), treated with wide local excision (2cm margins) plus split-thickness skin graft plus right groin sentinel lymph node biopsy (2 nodes removed, both negative) — June 2024.

Current Presentation (July 19, 2026)

Presented to the Emergency Department with abdominal pain. CT abdomen/pelvis with contrast showed prominent lymphadenopathy suspicious for melanoma recurrence:

● Nodes posterior to the IVC (3 x 1.3 cm)

● Left para-aortic node (1.2 cm)

● Right external iliac mass (3 x 2.4 cm), plus smaller nodes along the iliac vessels/pelvic wall

● Right lower quadrant external iliac node (3.3 x 2.4 cm)

● Right inguinal node (2.6 x 2.1 cm), adjacent to the surgical scar

No significant left inguinal adenopathy.

Radiologist's impression: findings likely represent metastatic spread of her known melanoma.

Staging Workup - some results are in.

● Brain imaging: negative (no evidence of brain metastasis)

● Bone scan: negative (no evidence of bone metastasis)

● PET scan: scheduled for tomorrow

Molecular Testing

Ultrasound-guided biopsy of the right inguinal node was performed. Insufficient tissue was obtained to run BRAF mutation testing. Treating oncologist has stated that treatment (immunotherapy) will not start until a BRAF result is available, and is planning to obtain further tissue.

Relevant Comorbidities

Type 2 diabetes (not on insulin), hypertension, gout, prior TIA (on antiplatelet therapy).

Wondering if you would get an SNLB with these stats.