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Rare Disease Day: Sean Wachter’s Story

Rare Disease Day is on February 29th and is a day dedicated to raising awareness for patients, families and carers around the world that are affected by rare diseases. Sean Wachter is an incredible rare melanoma survivor from the United States who has used his story and his passion for wrestling to give back and inspire others. We thank Sean for sharing his story with us. 

Can you describe your journey with stage 4 rare melanoma? 

Sean Wachter:

The actual receiving my diagnosis was not difficult, it was getting to the point of someone finally giving me a diagnosis that was the difficult part. I spent a period from about March of 2016 to right up until when I got sick on September 26, 2016 visiting various doctors and telling them that something wasn’t working with my body correctly. I had unfortunately been in a really bad accident about three or four years prior where I broke my neck, back and lost my ability to walk, and once I had regained my ability to walk unassisted was when things started feeling off in my body. Every doctor I went to said “It’s from your accident. This is post concussion syndrome” – they wanted to write it off.

Around May of 2016, I went on a date and while we were sitting there I got very dizzy and collapsed while eating. I was taken by ambulance to a local medical facility and they said I was just dehydrated and sent me on my way. About a month later, I was at a Mets baseball game and I blacked out right in the middle of the concourse. I wound up going to two separate hospitals that evening, because I wasn’t satisfied with the level of care I was getting at the first one. But the second one said the same thing, that I was dehydrated and had the flu so I was sent home again. About a month later, the same thing happened and I was taken to a hospital in New York City. So now I was starting to deal with good, world renowned hospitals but I still wasn’t taken seriously. 

In between these bigger incidents I had also gone to my local medical facility about six times telling them “Hey, something’s not right. Please listen to me”. The next time I went back was September 23, 2016 and I was not treated very well. I was basically told “You’re either drunk or hungover” but that was impossible because I didn’t drink. I didn’t know it at the time, but they were actually going to put me on a psychiatric hold – they thought I was making it all up in my head so they were going to hold me overnight for observation. I started to argue with them then, and pushed to see if they could give me an MRI but they refused because they thought nothing was wrong. Essentially, all they were willing to do was give me a bag of fluid so I ended up leaving on my own and going to my parents house because I knew something was wrong but I didn’t know what yet.

My parents had to leave for a few hours that weekend and within 10 minutes of them being gone, I was on the floor throwing up, my face was drooping and my legs wouldn’t work. Luckily, I managed to call my Dad and he came back and sprung into action. He took me back to the hospital but they didn’t want to help me again – they just said “Oh he’s back”. I proceeded to throw up all over myself, and they seemed more aggravated than anything because they were asking me to fill out the insurance forms but I couldn’t use my hands properly. I got put into the non-emergency area of the hospital and I asked for a CT scan but the nurse practitioner said I was too young. A few minutes after that, I started having a stroke, which unfortunately my parents had to see. That was when we found out I had a golf ball sized tumor in my cerebellum that caused a massive, massive hemorrhage. A doctor took my Dad aside while I was in surgery and told him I had late stage melanoma. I regained consciousness two days after the surgery, and I remember my dad just rubbing my ankle and telling me the news. And I said to him, “Okay, we’re gonna fight this thing and we’re gonna beat it”.

I was in the hospital for about a month and the people around me really showed up. My high school and college football teammates wrote up a spreadsheet of who was going to see me and what they would bring. I went to Sloan Kettering Hospital and I had radiation to clean up the surgical bed. When I was getting cleaned up, I noticed something that really influenced my cancer journey. At the time, they didn’t have a separate pediatric unit for radiation and I looked around and I saw a lot of sick kids that were maybe two or three years old. And I just thought “I’m not gonna sit here and feel sorry for myself. I’ve made every mistake a 31 year old man can make, and these kids haven’t even had a chance to steal a cookie yet”. So at that moment, I decided that whatever happens, happens. I came across an American former football player whose name is Inky Johnson, and he was speaking about how it’s not always about you, it’s about the people who come to lift you up. And I think that sometimes as a cancer patient or cancer survivor, it gets lost on us that while it may seem like we’re in the middle of the ocean surrounded by sharks by ourselves, in actuality there are still people around us, and we have a responsibility to them too. So the “It’s not about you” really resonated with me.

I continued to go on with my life, and we tried different immunotherapies and chemotherapies that unfortunately caused my liver to keep crashing. I went to the ICU and was told that I had a rare complication called lepto meningitis disease where the cancer spreads to your spinal cord fluid, and essentially the cells start to coagulate and you lose your brain function. I was told I had 12 weeks to live and to get my affairs in order. That was a right hook that sent me to my knees real quick. But I’m stubborn and didn’t want to accept it. 

With great research and clinical trials, we were able to find out that I had certain mutations that I could use to my advantage and that pretty much stopped the progression. All of a sudden, I started getting more and more time, which was really amazing. Around April of 2017, my doctor asked if I wanted to try another infusion on top of the two pills I was taking already. And that actually started to send the future scans into regression – I was having one of the best responses you could have to the medication. I decided I wanted to do something more, and I began coaching high school football. It was cool because me being sick really held the kids accountable. If a guy showed up late to practice, you’d have someone on the team saying “He was in chemo today, but you’re late?”. So “What’s your excuse? ” became their rallying cry. It was amazing because at one of the games, my friend arranged for all of the kids to wear these shirts that said Long Beach Football on the front and Coach Wachter Strong with the melanoma ribbon and the saying “What’s your excuse” on the back. It makes me cry to this day.

My scans were still regressing at that point and no one could really make sense of it. At that point, my parents talked to me and suggested I get back out there, because I’d fallen apart physically – I used to be in great shape but I lost that. So I put myself out there and started going on dates, and after a few attempts I saw my current wife on Bumble. I recognized her through a mutual friend and we started talking on Facebook. I asked her on a date and we spent 6 hours just talking. When I told my mom about her she actually said that we were born 5 houses apart, so she was the first girl I ever hung out with! Within a few months, we moved in together and I started helping her raise her daughter, which has been the biggest blessing. I have done so many cool things, but raising my stepdaughter has been the coolest thing I’ve gotten to do. She’s my best friend. I have no problem telling people my best friend’s eight year old because it’s her and my wife who made me realize I was not only going to beat cancer, I was going to go through it in a spectacular fashion. 

I decided to go into business and open an independent coffee chain on Long Island, both to show myself I could and to leave my wife and stepdaughter with something just in case. I always tell people that the coolest thing about doing the coffee shop was that it showed me what I still had in the tank because I would go from six o’clock in the morning to one o’clock in the morning working at our three locations. It’s cool to say I got to run a company from a chemo chair. Sometimes people treat cancer patients like they are totally disabled, so that showed me I was still able and that no matter the circumstances I needed to keep living my life.

In the summer of 2021, I got some more scans done and they showed further regression without treatment. So I took my last IV infusion of immunotherapy and got to ring the bell, which was awesome. I was still taking the oral chemo pills, so I wasn’t fully good yet but my scans and spinal taps kept coming out positively so in 2022 the doctors asked if I wanted to stop taking the chemotherapy pills.

It was very fitting for me because in March of 2022 my wife, my stepdaughter, and I were going to see a WWE live event in Connecticut. I absolutely love wrestling so I rented a limousine for us and got premium tickets. When we were on the way, my phone rang, and I saw the number of the hospital. I didn’t know if I wanted to answer it right then and there just in case but I begrudgingly picked it up, and I got a “Congratulations. As of right now you are the only documented survival case of this type of cancer”. I was crying happy tears and I got to tell my wife and stepdaughter. It was amazing.

My buddies wanted me to throw a party, but I did feel some survivor’s guilt so I decided to throw a fundraiser for Memorial Sloan Kettering Kids. It was a wrestling fundraiser and one of my friends had this brilliant idea of putting a poll on Facebook, essentially saying “If Sean wrestles, will you donate more money?”. I wrestled and it was a big success. Since then, I married my wife and we had our miracle baby. We also hosted another fundraiser where I wrestled in honor of my friend who passed away. It was such a wonderful event, it was twice as big. It was attended by local politicians and the press did an article on me that I put it on my LinkedIn, and from that ESPN found me. From there, I started wrestling a lot more and now we’re working on some amazing stuff. It’s been a crazy ride and I think my story really is a testament to folks that there’s life during and after cancer. I don’t think anyone should let their cancer diagnosis get in the way of them continuing to make their plans and live their lives. Of course that’s easier said than done but something as simple as getting out of the bed in the morning is still a victory over cancer. To me, without cancer there’s no wrestling and I realize that I have this responsibility to keep spreading awareness and sharing my story. I just hope that if somebody hears my story or sees me wrestle, they’re able to live a little bit fuller, or fight a little bit harder. I’d go down the same road 1000 times again, if it helps one person out.

To learn more about Sean’s story and get in contact with him, please click the link below.

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World Cancer Day: Harjeet Kaur’s Story

World Cancer Day is on February 4th and is a day to spread awareness of cancer as a whole and to encourage its prevention, detection and treatment. This year, we had the pleasure of speaking with Harjeet Kaur, a stage 4 rare blood cancer survivor who, after her diagnosis, became a wonderful advocate for other cancer patients and caregivers. Her story is one that encompasses the confusion, fear, and ultimately willpower that comes along with a cancer diagnosis. We thank Harjeet for sharing her story with us and giving us insight into her incredible resilience.

Can you share a little bit about your personal journey with cancer? When were you diagnosed and what emotions did you experience at that moment?

Harjeet Kaur: My story has been interesting. I migrated to Canada in 2018 with high hopes of settling down, having a family and having a better career. But life had different plans for me and my world completely flipped upside down in 2019, when I started having high fevers which were ongoing for two and a half months. I went to the doctor but the only answers I really got was that it might be viral or a flu and to take Tylenol every 2 hours to cut down the fever. Along with fevers I started having rigour episodes daily.  I went to the emergency room so many times, and had to wait for 6-8 hours to get answers and those times were really challenging for me. Finally, I was admitted to the University of Alberta hospital where I was treated as a research patient because no one knew what was going on with me. I had a couple of biopsies, surgeries and scans but there were no answers. It took them 3 months to diagnose me, and when I finally figured out what was going on it was August 27th, 2019. At that point I was going to move back to India to get some answers, but the doctor rushed in and told me I had stage four, rare blood cancer. I was 32 at the time and I had no idea that was. The doctor told me that they thought I should stay in Canada because I was stage 4 and had to start treatment right away. Listening to that news, my life completely stopped – I was in shock. My mom and brother were there with me, my husband had gone to see my family doctor to plan my move back to India, but then I called him and told him I had the diagnosis – I couldn’t tell him on the call that I had stage 4. After not having answers for a few months, to hear that I was stage four was really shocking. To get a late diagnosis at age 32 was something I never would have expected – it was a rollercoaster ride.

How long were you able to start treatment after you were first diagnosed?  

Harjeet Kaur: They did a skin biopsy which finally showed the diagnosis after 3 months. As soon as I got the diagnosis in the afternoon, they wanted to admit me right away and start the treatment as I was losing time. But we asked them for a few hours to process the news. Since it was 3 months delayed, we wanted to connect with our family doctor and the medical team we were talking to in India and update them. So I actually ended up starting chemotherapy the next day.

World Cancer Day is about raising awareness and taking action. What message would you like to convey to those who may be facing a cancer diagnosis for the first time?

Harjeet Kaur: As we all know, cancer is tough. Not only for the person, but also for the family. Going through the diagnosis, treatment during COVID (35 days of isolation) – all of it is tough. The number one thing I would tell someone who is facing a cancer diagnosis is to not lose hope. There are a lot of support groups and communities out there who can help. You can also ask for help from your friends and family. You don’t have to face this journey alone.

Absolutely! It sounds like your family were great caregivers to you throughout your diagnosis and treatment. What advice would you give to someone who is a caregiver for someone with cancer?

Harjeet Kaur: Caregivers play a really important role. I noticed that my caregivers never asked for anything, they only showed me love and support. That was something important for me to understand, that my caregiver was going through the same journey as I was. Especially because of how young I was, my entire family was in shock so I think it was difficult for them to see me like that. So the advice I would give to both patient and caregiver is to try to understand each other’s feelings and that treatment is going to be really hard. It can be hard to act like your normal self around that person because it’s difficult to see someone you love going through treatment and pain, and sometimes a patient won’t be able to express their feelings because of that. So it’s just you have to balance it out to understand each other’s experiences and thoughts and what they are feeling.

Yeah, I agree. It seems like both people are trying to be strong for the other one.

Harjeet Kaur: Definitely. I remember I constantly told myself to be strong for my family. I used to cry when I was alone because I didn’t want people to see me like that. I thought that if I show them that I’m breaking down, they’ll break down with me. That willpower really kept me strong and it did help sometimes to put on a brave face. To that point, another piece of advice is to keep a positive mindset, you really need to stay hopeful.

What strategies did you use to help yourself stay positive throughout your treatment and diagnosis?

When I was told that I was diagnosed with cancer, I really didn’t think that I’d be here today. But during the whole process of my journey, my family and friends were the things that kept me going. The only time I lost hope was during the stem cell transplant. When I was told that I had to be isolated for 35 days, I really thought I wasn’t coming back and that that would be the last time I would be able to hug my family. But during those 35 days, I just kept praying for the next day. I wanted to see my family again more than anything. So that hope and that strength within myself kept me going. And now here I am. I never thought I’d be strong enough to go through cancer or a stem cell transplant all by myself. It’s just important to not lose hope and to keep trying your best. Even when I was alone for those 35 days, I used to FaceTime my family just to listen to them. So you need to do whatever you feel will help whether it’s writing a blog, reading a book, going out in nature if you can. It’s really important how you keep yourself busy and positive during a journey like that. 

Definitely. You’ve become such a big advocate for other cancer patients. You said you started writing your blog while you were in isolation for the stem cell transplant, how did you start to build on that and find a community? 

The blog started because as I mentioned, when I was dropped at the hospital, I thought that I wasn’t going to go back so I really started writing some of my thoughts so that my family could read my experience, just in case. When I got home, I kept on writing about my journey. It took me 6-8 to start to feel like myself again after the stem cell transplant. I was like a newborn and was completely bedridden. The 100 days after the stem cell transplant was crucial for all of us, but I was getting better every day. I was trying to find someone who had the same kind of cancer as me, because it was so hard to find answers and information online.  I reached out to the Canadian Cancer Society to see if I could find someone who had a similar diagnosis, and then after that I connected with the YACC and became their Junior Leader and it spiraled from there. I started participating in all of these events and initiatives virtually (because of COVID) and listening to other people’s experiences gave me that strength and motivation to do something about spreading awareness. My passion is to spread awareness for early detection, because for me I was diagnosed at stage 4, which I think about sometimes. Like, what if I was diagnosed at stage 1? Those three months meant I lost my fertility, vision in my right eye as well as other side effects. It’s so important to advocate for your own health. Especially if you’re a young person, you are often not taken seriously because of your age. If you feel something is wrong, go to the doctor and push as hard as you can to get the answers. 

Yeah, definitely. So you would say overall, your experience within the Canadian health system was that it’s difficult to navigate, because you are a young person?

Yeah. It was also tough because as an immigrant, you don’t have a lot of connections at the beginning. And then you have to fight with your family doctor to get answers. I remember when I first went to the doctor for my fevers they told me it was a viral fever, but I knew that something wasn’t right inside my body. I never thought I’d become an advocate for others because of my diagnosis, because all it really was then was me advocating for my own health. We advocated really hard during the pre diagnosis for all of my tests and scans to be done. So I feel like when you’re young and when you have common symptoms, like a fever, no one takes you seriously. And who would have thought that fevers would lead to stage 4 cancer! So similarly, I think the education and awareness piece is really important. Being young doesn’t mean that we can’t get cancer. Cancer doesn’t care what race, religion or age you are.

What do you think is the best way for someone to be able to advocate for themselves in the medical system? 

In the medical system, I would say it’s really difficult but there are support groups and communities out there which can help you. Even events that teach you how to ask for things in the medical system are great. When it comes to someone’s health, you have to fight, whether it’s with the medical team, the government, public health, or whatever. You also have to have those relationships with your oncologists and doctors so that they can help guide you. Also if you have questions, make sure to ask them, even if you feel like they’re small.The more questions you ask, the more answers you will get and that leads to advocacy too!I still go for my follow ups every three months and I ask them about any small symptom I have to be sure. You need to ask and educate yourself whether it’s within the doctor’s office or in a support group.

Yeah, absolutely. I think that’s very good advice. What do you think are some things that people can do whether or not they have a cancer diagnosis themselves or their caregiver, but the average person, what do you think they can do to contribute to raising awareness and supporting cancer research across the board?

For people who are touched with cancer, it’s great to spread awareness by joining communities and support groups and helping them spread and share their message. So many of them do research programs so supporting those is a great start. Helping patients is also really important, whether it’s offering to drive someone to an appointment, making them food or something else. Any small kind of help really means the world in these situations. I know it’s really difficult for a person to express their feelings around having cancer and there can be a lot of stigma around cancer, especially in the South Asian community. So talking to a patient about it is actually a good thing because it shows them that you’re being present for them and are giving them the opportunity to talk if they would like to. 

We thank Harjeet for sharing her story and we urge everyone to unite and take action to improve access to pre-screening, testing and quality care. To read more about Harjeet’s story and to get in touch with her, click the button below.

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Understanding Melanoma on the Eye: Types, Diagnosis, and Treatment Options

Melanoma on the eye, also known as ocular melanoma, is a rare but serious form of cancer that develops from melanocytes, the cells responsible for producing melanin. This pigment gives color to the eyes, skin, and hair. In this blog post, we’ll delve into the types of ocular melanoma, its diagnosis, and available treatment options. [1]

Types of Ocular Melanoma

Ocular melanoma includes ocular melanoma, also called uveal melanoma, and conjunctival melanoma. [2]

Ocular/Uveal Melanoma

The uvea is a three-layered part of the eye. It is made up of the choroid, iris and ciliary body. Uveal melanoma can form in any of these layers and is named for where it forms:

  • Choroidal melanoma begins in the layer of blood vessels – the choroid – beneath the retina. It is the most common type of uveal melanoma. A 2012 article by the American Academy of Ophthalmology discusses the differences between choroidal nevi and choroidal melanoma.
  • Iris melanoma occurs in the front, colored part of the eye. Iris melanomas usually grow slowly and do not typically metastasize, or spread, to other parts of the body outside the eye.
  • Ciliary melanoma originates in the ciliary body, situated in the front of the uvea, responsible for secreting aqueous humor into the eye. These melanomas may grow anteriorly, visible on biomicroscopy as a darkly pigmented mass behind the pupil. Pigmentation can vary. Notably, ciliary melanomas tend to progress more rapidly, with a higher likelihood of metastasizing to the liver, compared to iris melanomas.

Treatment for ocular melanoma may involve procedures such as radioactive plaques, proton beam therapy, or even eye removal.

Recent advancements, such as the Health Canada approval of Kimmtrak in June 2022, provide hope for patients with unresectable or metastatic uveal melanoma.

Conjunctival Melanoma 

The conjunctiva is the clear tissue that covers the white part of the eye, as well as the inside of the eyelids. Conjunctival melanoma is very rare. It often appears as a raised tumor and may contain little or even no pigment. Conjunctival melanoma most commonly occurs in the bulbar conjunctiva – the mucous membrane that covers the outer surface of the eyeball. Unlike other forms of ocular melanoma that spread most often to the liver, when conjunctival melanoma spreads, it most often spreads to the lungs.

Individuals diagnosed with conjunctival melanoma may undergo resection, cryotherapy, topical chemotherapy, or radiation as part of their treatment plan.

melanoma on the eye

Diagnosis and Prognosis Melanoma on the Eye

Diagnosing ocular melanoma often involves routine eye exams, where some cases may be asymptomatic. The prognosis varies, with uveal melanoma recurrence occurring in less than 5% of cases after primary treatment. However, approximately 50% of people with uveal melanoma may develop metastases, typically in the liver. [3]

Treatment Options

Treatment for melanoma on the eye depends on the type, location, and stage of the cancer. The aim is to control the primary tumor and prevent recurrence or metastasis. In advanced cases, a range of treatments, including immunotherapy, molecularly targeted agents, and liver-directed therapies, may be employed.

Ocular melanoma, though rare, poses unique challenges in diagnosis and treatment. Collaborative efforts between patients, healthcare professionals, and researchers are crucial for advancing our understanding and developing more effective treatments. Ongoing research and recent breakthroughs, such as the Health Canada approval of Kimmtrak, offer hope for improved outcomes in the fight against ocular melanoma.

Get Support

Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular/uveal melanoma (OM).


We are here to help. Call us at 1-800-460-5832 or email

Learn More About Immunotherapy

Immunotherapy is a drug treatment that uses the human body’s own immune system to fight cancer.  It may be administered to patients intravenously in the Chemotherapy Unit of the hospital, but it is not the same as chemotherapy.

Learn More About Targeted Therapy

Targeted therapy drugs are designed to specifically target cancer cells. For melanoma, these drugs target the activity of a specific or unique feature of melanoma cancer cells.

Learn More About Clinical Trials

New treatments are tested in clinical trials before they are approved for general use. There are safeguards in place to ensure clinical trials are as safe as possible and meet medical ethical standards. Participating in a trial can be a way to have access to potentially helpful new therapies you couldn’t get otherwise.

[1] “Cancerous Tumours of the Eye.” Canadian Cancer Society, Accessed 4 Jan. 2024.

[2] “CURE OM – Melanoma Research Foundation.”, 27 June 2023, Accessed 4 Jan. 2024.

[3] “Ocular Melanoma.” AIM at Melanoma Foundation, Accessed 4 Jan. 2024.

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Understanding Melanoma on the Scalp: Diagnosis, Treatment, and Considerations

Melanoma, the most dangerous form of skin cancer, can present unique challenges when it develops on the head or neck, particularly on the scalp. In this blog post, we will look at the distinctive characteristics and considerations for melanoma on the scalp, which are crucial for effective diagnosis, treatment, and follow-up care.

Melanoma on the Scalp: Unique Characteristics and Challenges

Behavior and Treatment Differences

When melanoma occurs on the head or neck, it may behave differently than when found on other parts of the body. The complexity of the anatomy in these areas, with numerous blood vessels and lymph nodes, makes it potentially easier for melanoma to spread. As a result, treatment for melanoma on the head, neck, or scalp tends to be more aggressive.[1]

Reconstructive Surgery Considerations

Reconstructive surgery may be necessary, especially after cancer surgery on the head or neck. This can involve immediate reconstruction or a delayed approach, depending on factors like the stage of cancer and the need for additional surgeries. The waiting period allows for thorough examination and testing to determine the necessity of further procedures.

High Prevalence of Melanoma on the Scalp

Despite accounting for only 9% of the total body surface, the scalp harbors 20% of melanoma cases. A literature review highlights that scalp melanomas are more common in the elderly and men and have a 10-year survival rate of 60%.[2]

Histological Diversity and Diagnosis

Scalp melanoma encompasses a heterogeneous group of types, including lentiginous melanoma, desmoplastic melanoma, superficial spreading, and nodular melanoma. All suspicious lesions should be biopsied, with excisional biopsy often recommended.[3]

Prioritizing Awareness and Follow-Up Care

Given the aggressive nature of melanoma on the scalp, heightened awareness and proactive follow-up care are crucial. Regular check-ups, including thorough cancer examinations and relevant testing, can facilitate early detection. This, in turn, improves the chances of a positive outcome. If you suspect any unusual changes on your scalp or have concerns about melanoma, it’s essential to consult with a dermatologist promptly.

Remember, knowledge and awareness are powerful tools in the fight against melanoma, and early intervention can make a significant difference in your overall health and well-being.

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).


We are here to help. Call us at 1-800-460-5832 or email

Learn about other types of skin cancer:

Basal Cell Carcinoma

BCC is the most common cancer in the world, with incidence exceeding that of all other cancers combined. BCC can develop anywhere, though it is most commonly found in sun exposed areas.

Squamous Cell Carcinoma

Squamous cell carcinoma (SCC), which begins in the keratinocyte cells, is the second most common skin cancer. While SCC usually develops in areas that have been exposed to the sun, it can also manifest in burn or wound sites.

Merkel Cell Carcinoma

Merkel Cell Carcinoma (MCC) is a rare non-melanoma skin cancer. It can develop in the merkel cells, which are found in the deepest areas of the epidermis and hair follicles.

[1] “Treatment May Differ for Melanoma on the Head or Neck.”, Accessed 3 Jan. 2024.

[2] [3] Licata, Gaetano et al. “Diagnosis and Management of Melanoma of the Scalp: A Review of the Literature.” Clinical, cosmetic and investigational dermatology vol. 14 1435-1447. 7 Oct. 2021, doi:10.2147/CCID.S293115

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CURE OM Global Science Meeting Recap

Creating a Shared Vision of Progress and Hope

Date of the meeting: November 6, 2023

Hosted by the Melanoma Research Foundation

The recent Cure OM Global Science Meeting held in Philadelphia aimed to foster a shared vision of progress and hope in the fight against ocular/uveal melanoma. The event brought together researchers, clinicians, industry partners, and patients to discuss advancements, clinical trials, and collaborative efforts. The mission, as emphasized by the Melanoma Research Foundation, is to eradicate melanoma through accelerated research, education, and advocacy.

This blog article summarizes some of the meeting’s highlights.

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Dramatic Evolution in Research Landscape

  • Reflecting on the past decade, participants noted a significant shift in the ocular melanoma research landscape.
  • In 2013, industry partners didn’t participate actively in the discussion and the focus was on understanding the unique characteristics of uveal melanoma, distinct from cutaneous melanoma.
  • In 2023, the meeting showcased substantial progress with seven industry partners actively engaging in discussions, covering primary eye treatment, genetic prognostics, metastatic disease treatments and adjuvant and neo-adjuvant therapies.

Industry Partner Presentations

Aura provided updates on AU-011 (Bel-Sar), a virus-like particle conjugated with a light activated cytotoxin which aims to kill the tumor. It is either injected suprachoroidally or intravitreally and is light-activated. They presented some positive data showing the safety and efficacy giving us hope that perhaps this could be a new primary treatment that could treat primary uveal melanoma while sparing patients from dealing with the fallout from radiation-induced retinopathy. Bel-Sar will hopefully be moving into a phase three clinical trial.

Delcath discussed Hepzato, a recently FDA-approved liver-directed therapy which is set to be commercially available in early 2024.

Ideaya reported promising data in the Phase 1/2 trial of darovasertib and crizotinib, with pivotal trials now open at multiple sites in the US and abroad. Neoadjuvant and adjuvant trials will also be opening worldwide.

Immunocore presented on tebentafusp or Kimmtrak, the first FDA approved therapy for metastatic uveal melanoma. It is now widely available in the US and abroad. And there are some ongoing trials looking at other targets.

Replimune is looking to open a clinical trial in the uveal melanoma space. They are working on an intralesional (direct injection into the tumor) modified virus. It is a herpes virus that is modified with something called GM-CSF and other immune tweaks to help the immune system recognize the cancer. In a trial, metastatic uveal melanoma patients were given either just this injection or the injection in combination with nivolumab and the response rates were upwards of 28.6% with a disease control rate of 57.1%. There is hope that this clinical trial will be available to patients soon.

TriSalus presented on the ongoing Perio-1 clinical trial. This is an intra-hepatic artery delivery of an immune stimulant via a special catheter in combination with immune checkpoint inhibitors that are given peripherally.

Discussion Points

A key emphasis was placed on the growing interest and involvement of various companies in developing treatments for ocular/uveal melanoma. While this is a positive trend, speakers highlighted the need for collaboration to avoid competition between trials and ensure inclusivity. Physicians don’t want patients to feel that if they start one clinical trial, they won’t be able to go on another. Suggestions included making inclusion and exclusion criteria less restrictive, ensuring trials are accessible across different regions and supporting patients so that lack of access to clinical trials is not a reason to not participate.

Liver-Directed Therapy – Pros and Cons

The discussion then turned to liver-directed therapy, a crucial treatment approach for uveal melanoma. Dr. Orloff underscored the importance of understanding the pros and cons of liver-directed therapy, systemic therapy, and combination therapy. These considerations are crucial for patients facing decisions about the most suitable treatment path.

1. Liver-Directed Therapy:
  • In MUM, liver metastases are leading cause of death
  • Various liver directed treatments can be very effective at controlling hepatic metastases
  • Often well tolerated with limited side effects experienced between treatments
  • Some patients only require limited treatments with long treatment free intervals
  • Not restricted to any one population
  • Have one FDA approved LDT option (PHP)
  • MUM by definition is a systemic disease and extrahepatic disease can develop and lead to morbidity and rarely mortality
  • Requires institutional expertise
  • Patients may need to travel further for treatment
  • Some liver directed treatments require more extensive resources
  • Limited randomized trial data (comparing LDT or to systemic treatments)
2. Systemic Therapy:
  • Treatment of systemic disease (treats the whole body)
  • Tebentafusp is available and has an overall survival benefit and good side effect profile
  • Darovasertib + Crizotinib is also an option with a decent objective response rate (ORR) and disease control rate (DCR)
  • Tebentafusp is HLA restricted
  • It needs to be injected weekly
  • It has a low response rate and has a high rate of immune-related adverse event
  • It may not shrink tumours up-front
  • Often systemic trials are restricted to line of therapy
3. Combination Therapy:
  • Potential to control both hepatic and systemic metastasis
  • Opportunities for debulking tumors before systemic therapy
  • Synergy of liver directed treatment and systemic treatment especially when using systemic immunotherapy
  • Optimal combinations and sequences are unknown
  • Toxicities of both therapies need to be managed

Data Highlights and Proposed Studies


TriSalus presented data as a late-breaking abstract at the Society for Immunotherapy of Cancer (SITC) annual meeting. They are investigating their special catheter that allows infusion of SD-101 infusion in combination with immunotherapy. There have been multiple cohorts, and the results so far show a 58% disease control rate (DCR) across all SD-101 doses and an 81% DCR at two milligrams. Optimizing dosage is a focus, as higher doses may not necessarily be more effective. Preliminary overall survival signals are encouraging.

Percutaneous Hepatic Perfusion (PHP)

PHP is a catheter system facilitating closed-circuit liver perfusion with melphalan. Results from the focus trial, presented in 2022 at ASCO, demonstrated significant improvements in overall response and disease control compared to alternative care arms. Side effects, primarily related to bone marrow suppression, were noted.

Combination Trial Designs

Ongoing trials show promise in combining hepatic perfusion with immune checkpoint inhibitors.

  • The Scandium II trial compared hepatic perfusion (IHP) followed by immune checkpoint inhibitors (ICI), with ICI followed by IHP followed by more ICI. The Scandium III trial compared ICI alone with PHP followed by ICI.
  • Another trial presented by Dr. Orloff explored combining tebentafusp with liver-directed therapy. For lower volume disease, the design involves administering tebentafusp upfront, followed by liver-directed therapy. For higher volume disease, the design involves chemoembolization first, followed by tebentafusp.

Adjuvant and Neo-Adjuvant Clinical Trials

Three new trials will be opening soon in the adjuvant/neo-adjuvant space:

  • Quizinostat (University of Miami)
  • Neoadjuvant/Adjuvant Darovasertib
  • ATOM: Adjuvant Tebentafusp Ocular Melanoma

Tebentafusp in Practice

Dr. Butler, Dr. Sullivan and Dr. Seedor all presented on tebentafusp in practice. Tebentafusp is a bispecific molecule that brings T-cells to the tumour and have been showed to offer significant survival benefits. The challenge lies in translating clinical trial success to real-world scenarios, where patients might have more advanced disease.

Dr. Seedor shared case vignettes featuring patients with a substantial disease burden. These patients showed potential benefits from tebentafusp but Dr. Seedor suggested that stabilizing patients before initiating tebentafusp might be necessary for optimal outcomes.

Dr. Butler presented on the situation in Canada, where initial access to the drug was previously restricted to two centres, but has now expanded nationwide, enabling a diverse group of patients to undergo tebentafusp treatment. In a real-world grouping of patients, it was observed that stabilization or positive responses to tebentafusp were linked to improved outcomes, aligning with findings from clinical trials and showing that a variety of patients are experiencing benefits from tebentafusp.

Dr. Sullivan presented innovative data addressing the challenge of assessing tebentafusp’s impact on cancer. While the drug may not necessarily shrink tumours, it slows down their growth. Traditionally, oncologists rely on tumour shrinkage to gauge treatment efficacy. Dr. Sullivan discussed findings suggesting that even in cases of disease progression on imaging, a decrease in circulating tumour DNA correlates with a more favourable response to therapy. However, the specific assay used in the study isn’t commercially available. Dr. Sullivan found that there are several ways to analyze circulating tumour DNA and cells in the blood fraction and that one of them might be better suited to patients with uveal melanoma, suggesting that even patients who are on standard of care treatment may benefit from clinical trials that use this biomarker as a way to follow patients.

Systemic Therapies Highlights

Several presentations focused on systemic therapies.

Dr. Moser shared insights into emerging therapies:

  • Roginolisib – PI3Kδ inhibitors are showing promising results in patients and in animals
  • Radioligand therapy – A novel approach to targeting tumors using a molecule that brings radiation particles directly to the tumour to target tumour cells.
  • TCR Therapy – Promising trials are trying to target tumors with cell therapies. There are actually several different studies looking at TCR based therapies, CAR T-cell based therapies as well as tumor infiltrating lymphocyte therapies are being studied across the world to determine the best approach for patients.

Dr. Hamid explored byspecific antibodies in OM:

  • He highlighted the three-year survival rate for tebentafusp, which showed a consistent benefit in terms of overall survival. Unfortunately, not enough patients are doing really well five years later, but certainly, they’re doing better than they were on the investigator’s choice protocol.
  • Immunocore has a new agent called F106C that targets PRAME, which is an antigen expressed highly in uveal melanoma but also in other types of cancers. They’ve seen a high percentage of response in patients with uveal melanoma as well as skin tumours. And there are several follow up trials beyond the initial phase one to look at the role of this study in patients with uveal melanoma, cutaneous melanoma, as well as other tumours in the future.
  • Various different types of immune cells are being investigated for cancer treatment:
    • Lymphocyte cells that are allogeneic (cells that come from one person and are used in another person to fight the cancer)
    • CAR T-cell
    • Bispecific agents brought into a cell and infused as a therapy
    • Human mesenchymal stromal cells

Dr. Butler presented on Protein Kinase C Inhibition. He covered the promising results of darovasertib in combination with crizotinib for uveal melanoma, presenting a high response rate, even in patients with significant disease burdens. The phase one study, having transitioned to phase two/phase three, is now comparing darovasertib and crizotinib to immunotherapy or investigator choice in the first-line setting. The study aims to provide insights into the therapy’s duration, side effects, and optimal administration strategies across multiple centres. However, challenges remain, such as determining the sequencing of therapies, determining which patients should get the drug right away and which patients should be treated later on, and engaging with pharmaceutical companies to ensure patients have access to various treatment lines.

Dr. Khan reviewed data on immunotherapy with checkpoint inhibitors, pointing out that, while there is a higher response rate with combination immunotherapy, there are many more side effects with combination immunotherapy compared to single agent anti PD-1 therapy. Studies that compared ipilimumab + nivolumab versus nivolumab or pembrolizumab alone showed that the overall survival rate in these non-concurrent clinical trials are not that different. The response rate is a bit higher for combination versus single agent but there is no significant difference in overall survival.

One study looked at the LAG-3 combination of nivolumab and relatlimab and found that the response rate was higher than for a single agent, but a little bit lower than combination in that study. It may be an option for patients that want a higher response rate with less side effects.

Patient-Powered VISION Registry

Sara Selig introduced the VISION platform, a patient-powered real-world registry. With over 400 registered patients, the platform aims to collect data on diagnosis, barriers to treatment, and patient priorities. This valuable information aids in understanding the patient experience and advocating for improved resources and access.

In conclusion, the CURE OM Science Meeting showcased a vibrant landscape of advancements in ocular melanoma treatment. From neoadjuvant trials to real-world applications and promising biomarkers, the meeting underlined the collaborative efforts driving progress. As patients, advocates, and researchers continue to navigate this journey, the collective commitment to advancing knowledge and accessibility remains a beacon of hope.

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).


We are here to help. Call us at 1-800-460-5832 or email

Learn about our other resources for ocular melanoma patients:

Ocumel Canada

Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular melanoma (OM).

About Ocular and Uveal Melanoma

This page contains lots of information about ocular/uveal melanoma and resources for patients.

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Understanding Melanoma Cancer

Melanoma is a type of cancer in which malignant cells form in the melanocytes (the cells that produce melanin or pigment in the skin). Melanoma can occur anywhere on the skin and can metastasize (spread) to other parts of the body. There are several subtypes of melanoma, including cutaneous, acral, mucosal, ocular, and even amelanotic melanoma.

Here are some common questions about melanoma:

What are melanocytes?

Melanocytes are a type of cell that produces melanin, the protective black, dark brown, reddish-brown or yellow pigments that colour our skin and hair. The melanocytes are mostly found in the epidermis but can also occur elsewhere, like in the matrix of the hair.[1]


What causes melanoma skin cancer?

Melanoma skin cancer is influenced by various risk factors, with the primary contributor being exposure to ultraviolet radiation (UVR) from the sun and indoor tanning. Having just one blistering sunburn as a child or teenager increases your risk of developing melanoma.

Melanocytes illustration

Other risk factors include the presence of many moles, atypical moles, congenital melanocytic nevi (birthmarks or moles that are present at birth or develop shortly after), and familial conditions like Familial Atypical Multiple Mole Melanoma (FAMMM) syndrome. Additionally, hereditary factors, such as the CDKN2A gene mutation, Xeroderma Pigmentosum, Werner syndrome, and Retinoblastoma, can elevate the risk. Light-colored skin, eyes, and hair, a personal history of skin cancer, a family history of skin cancer, and a weakened immune system are also identified as significant risk factors.[2]


What does melanoma skin cancer look like?

Not all melanomas have the same appearance. Depending on your skin colour, the melanoma might be brown, black, reddish, tan, sometimes even blue! Though most melanomas develop on normal-looking skin, some develop on existing moles. The best way to catch a melanoma early is to look for anything new, changing or unusual on your skin.

A common and effective tool to help you spot melanoma is the ABCDEs of Melanoma:

A stands for asymmetry, where one half of the lesion does not match the other in shape.

B stands for irregular borders; melanomas often have jagged or notched edges instead of smooth contours.

C stands for colour; melanomas sometimes have more than one colors within the lesion, such as brown, black, tan, red, blue, or white, in contrast to the more uniform shades seen in benign moles.

D stands for diameter, with melanomas tending to be larger than other moles, or grow larger over time.

E stands for evolving, highlighting the importance of observing any changes in texture, elevation, size, colour, or the development of symptoms like bleeding or itching.

Regular skin self-examinations and professional skin checks are vital for early detection, as prompt medical attention significantly improves the chances of successful melanoma treatment.

To learn more about performing a skin check, visit our Skin Check Guide page.

Is melanoma skin cancer dangerous?

Melanoma is one of the most serious forms of skin cancer. The Canadian Cancer Society estimates that it caused 1,200 deaths in Canada in 2022. The outlook for individuals with melanoma can vary significantly. Most melanomas can be cured if detected and treated before they have a chance to spread. Early detection and removal of melanoma are essential for a full recovery.


How is melanoma skin cancer treated?

There are various treatment options for melanoma. When someone is diagnosed with melanoma, their healthcare team discusses the best melanoma treatments for them and works with them to develop a treatment plan. Here are some of the most common treatment options:

  • Surgery
  • Immunotherapy
  • Targeted Therapy
  • Radiation Therapy
  • Chemotherapy
  • Clinical Trials

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).


We are here to help. Call us at 1-800-460-5832 or email

Learn about other types of skin cancer:

Basal Cell Carcinoma

BCC is the most common cancer in the world, with incidence exceeding that of all other cancers combined. BCC can develop anywhere, though it is most commonly found in sun exposed areas.

Squamous Cell Carcinoma

Squamous cell carcinoma (SCC), which begins in the keratinocyte cells, is the second most common skin cancer. While SCC usually develops in areas that have been exposed to the sun, it can also manifest in burn or wound sites.

Merkel Cell Carcinoma

Merkel Cell Carcinoma (MCC) is a rare non-melanoma skin cancer. It can develop in the merkel cells, which are found in the deepest areas of the epidermis and hair follicles.

[1] The Editors of Encyclopedia Britannica. “Melanocyte | Biology.” Encyclopædia Britannica, 16 Nov. 2018, Accessed November 23, 2023.

[2] Canadian Cancer Society. “Risk Factors for Melanoma Skin Cancer.” Canadian Cancer Society, Accessed 25 Nov. 2023.

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Life After Treatment: Resources for Skin Cancer Survivors

Becoming a skin cancer survivor is not just about defeating a disease; it’s about transitioning from one phase of your life to another. Many melanoma survivors we’ve talked to have said that transitioning into survivorship, despite being the best possible outcome, has its own unique challenges. Suddenly, the care team that had been seeing them regularly is no longer part of their life. And then there’s scanxiety, or the anxiety that many people struggle with when it’s time for their annual maintenance scans.

Kathy Barnard, founder of Save Your Skin Foundation, understands this all too well as she is herself a melanoma stage 4 survivor. That’s why, when she decided to start Save Your Skin Foundation in 2006, she knew she wanted to make sure the foundation supported skin cancer patients throughout the whole continuum of their journey, including survivorship. She also wanted to help survivors and patients connect with each other so they would feel less alone in their journey.

This blog post will give you an overview of the resources we’ve developed to support melanoma and non-melanoma skin cancer survivors. We hope you will find something that can help you on your journey.

Resources for Skin Cancer Survivors

Survivorship Resources

Our Survivorship page lists several resources created specifically for cancer survivors.

skin cancer survivor
skin cancer survivor

Self-Care After Cancer

Our Self-Care After Cancer page offers tons of information for those in remission, including a Q&A that answers common questions asked by new skin cancer survivors.

I’m Living Proof

I’m Living Proof is an interactive map that allows you to find other skin cancer survivors. Simply click on a star to read their story. You can even request to connect with them if you would like to know more or ask a question. We hope these stories of strength and resilience will offer you support and inspiration as you navigate your own path.

skin cancer survivors

Monthly Fireside Chats

Join our Monthly Patient Fireside Chats which have a small standing group of core hosts & new topics every first Thursday of the month. These informal chats are open to patients, survivors, caregivers and family members touched by melanoma, non-melanoma skin cancer, and ocular melanoma. They are discussions about life after a cancer diagnosis, including sharing experiences with treatment options, survivorship, navigating the healthcare system, and any other concern that you might have. It is also a great opportunity to meet other patients and survivors from across Canada.


Save your Skin Foundation webinars are a great way to stay up-to-date by listening to patients, survivors, doctors, and pharmaceutical company executives discuss the melanoma, non-melanoma skin cancer, and ocular melanoma landscape. Each webinar features a variety of experts and discusses a different topic.

skin cancer survivor
skin cancer survivor

One-on-one Support

Transitioning into survivorship has its own challenges. Save Your Skin Foundation wishes to bring support to all those in remission. We invite all ocular melanoma, melanoma, and non-melanoma skin cancer patients, at any stage, to get in touch.

As you navigate the complex landscape of life after skin cancer treatment, remember that you are not alone. We invite you to connect with us and fellow survivors, and to help us in creating a community where hope and resilience abound as you embrace this new chapter in your journey.

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).


We are here to help. Call us at 1-800-460-5832 or email

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Understanding Melanoma Treatment Side Effects

Facing a melanoma diagnosis can be a daunting experience. Thankfully, there are various treatment options available to combat this disease. These treatments offer the potential for recovery and a return to a fulfilling life. It’s important to be aware that, like any medical treatment, melanoma treatments can come with side effects. In this blog post, we’ll explore the side effects associated with the most common treatment types, providing insights that can empower patients to navigate their melanoma treatment journey with confidence.

Immunotherapy Side Effects

Immunotherapy is a treatment that harnesses the body’s immune system to fight cancer cells. As with any treatment, side effects can vary from person to person. They also vary depending on the type of immunotherapy drug. The Canadian Cancer Society  lists the following symptoms:

The side effects of Interferon alfa-2b or interleukin-2 (cytokines) for melanoma may include:

  • Flu-like symptoms: Patients may experience symptoms such as fever, chills, and body aches, reminiscent of the flu.
  • Fatigue: General tiredness is a common side effect.
  • Loss of appetite: Anorexia, or loss of appetite, may occur.
  • Digestive issues: Side effects like diarrhea and nausea/vomiting can affect some patients.
  • Skin problems: A rash may develop as a side effect.
  • Low blood cell counts: Some patients may experience a decrease in blood cell counts.
  • Depression: High-dose interferon alfa-2b may lead to depression.
  • Swelling: Interleukin-2 can lead to swelling due to fluid retention.

The side effects for ipilimumab, nivolumab or pembrolizumab (immune checkpoint inhibitors) may include:

  • Fatigue: Patients may experience increased tiredness.
  • Diarrhea: Digestive issues, including diarrhea, can occur.
  • Skin problems: Some individuals may develop a rash.
  • Headaches: Headaches may be a side effect.
  • Liver problems: Yellowing of the skin and eyes may indicate liver problems.
  • Thyroid problems: Changes in weight, body temperature, heart rate, and blood pressure may result from thyroid issues.
  • Lung problems: Cough and difficulty breathing can be side effects.

It’s important to note that side effects can occur at any time during or after immunotherapy. While most side effects are temporary and can be managed, some may persist over the long term. It is crucial for patients to report any side effects to their healthcare team promptly, as they can offer solutions to alleviate these symptoms and ensure a better treatment experience.

melanoma treatment side effects

Targeted Therapy Side Effects

Targeted therapy is a treatment that specifically attacks cancer cells while sparing healthy cells. This approach typically results in fewer and less severe side effects than traditional chemotherapy or radiation therapy. According to the Canadian Cancer Society, common side effects of targeted therapy for melanoma may include:

  • Skin problems: Rashes and dryness can affect some patients.
  • Sun sensitivity: Patients may become more sensitive to sunlight.
  • Muscle bone and joint pain: Some individuals may experience pain in these areas.
  • Fatigue: General tiredness can occur.
  • Digestive issues: Nausea, vomiting and diarrhea may be side effects.
  • Fever: Patients may run a fever.
  • Eye problems: Some individuals may experience issues with their eyes.
  • Abnormal liver function: Liver problems may arise.
  • Swelling: Edema may develop.

Just like with immunotherapy, side effects from targeted therapy can appear at any time during or after treatment. While many side effects resolve on their own or with medical intervention, it’s crucial for patients to communicate any concerns with their healthcare team.

Radiation Therapy Side Effects

Radiation therapy is designed to target cancer cells with minimal harm to surrounding healthy tissue, but some damage might still occur, causing side effects during, in the days or weeks after or even years after the treatment. According to the Canadian Cancer Society, the side effects will depend on the size and area being treated, the dose and the treatment schedule. The side effects may include:

  • Skin problems: Redness and irritation of the skin may arise.
  • Fatigue: General tiredness can be a side effect.
  • Hair loss: Hair loss can occur in the treated area.
  • Sore mouth and throat: When radiation is aimed at the head or neck, some patients may experience mouth and throat discomfort.
  • Lymphedema: This swelling condition may occur when radiation targets the underarm or groin area.

Similar to other treatments, side effects from radiation therapy can appear at different times. Most of these side effects are manageable, and it’s important for patients to inform their healthcare team of any issues.

Surgery Side Effects

Surgery is a common treatment for melanoma, but it can also have side effects. According to the Canadian Cancer Society, these side effects may include:

  • Pain: Pain is often managed with pain medicines.
  • Scarring: Surgical procedures can result in scarring.
  • Bruising: Some bruising may occur.
  • Changes to skin color: Skin color changes may develop.
  • Wound infection: Infections at the surgical site can occur.
  • Numbness: Some patients may experience numbness in the treated area.
  • Poor healing: Healing issues can arise.
  • Lymphedema: Lymph node dissection may lead to swelling.

As with other treatment methods, side effects from surgery can happen at various times. While most side effects are temporary and can be addressed, open communication with the healthcare team is essential.

In conclusion, melanoma treatment is a complex journey, and understanding the potential side effects is a critical part of it. While these side effects can be challenging, most are manageable with the support and guidance of a healthcare team. It is essential for patients to communicate any side effects promptly, as addressing them early can significantly improve the overall treatment experience and ultimately contribute to a better quality of life during and after melanoma treatment.

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).


We are here to help. Call us at 1-800-460-5832 or email

Learn about other types of skin cancer:

Basal Cell Carcinoma

BCC is the most common cancer in the world, with incidence exceeding that of all other cancers combined. BCC can develop anywhere, though it is most commonly found in sun exposed areas.

Squamous Cell Carcinoma

Squamous cell carcinoma (SCC), which begins in the keratinocyte cells, is the second most common skin cancer. While SCC usually develops in areas that have been exposed to the sun, it can also manifest in burn or wound sites.

Merkel Cell Carcinoma

Merkel Cell Carcinoma (MCC) is a rare non-melanoma skin cancer. It can develop in the merkel cells, which are found in the deepest areas of the epidermis and hair follicles.

“Immunotherapy for Melanoma Skin Cancer.” Canadian Cancer Society, 2015, Accessed 27 Oct. 2023.

“Targeted Therapy for Melanoma Skin Cancer.” Canadian Cancer Society, Accessed 27 Oct. 2023.

“Radiation Therapy for Melanoma Skin Cancer.” Canadian Cancer Society, Accessed 27 Oct. 2023.

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Paxlovid® Submission Survey Results Data

Save Your Skin Foundation is proud to present the findings of our survey, designed to capture the experiences of individuals with COVID-19 in using Paxlovid® as a treatment. This survey welcomed participants from diverse backgrounds, including those who have battled COVID-19, regardless of whether they used Paxlovid®, as well as individuals keen to share their views on accessible treatments for the virus.

The invaluable insights gathered through this survey played a pivotal role in shaping our submissions to the Canadian Agency for Drugs and Technologies in Health (CADTH) and Institut national d’excellence en santé et en services sociaux (INESSS) for access to Paxlovid®.

Save Your Skin Foundation developed this survey to gather patient experiences regarding the use of Paxlovid® as a treatment for COVID-19. The survey was open to everyone who has either experienced COVID-19, regardless of whether they received Paxlovid®, and others who wanted to contribute their opinion on the importance of accessible treatments for COVID-19. This information was used for Save Your Skin Foundation to prepare submissions for access to Paxlovid® to CADTH and INESSS. This survey was endorsed and distributed by a variety of partner patient groups, to whom we are grateful for their support; a complete list of these organizations is available on the final page of this presentation.

Two versions of the survey were open from September 3-September 20, 2023, one in English and one in French. Data from both of the surveys was combined for the aforementioned CADTH and INESSS submissions. For this presentation, visual representations of the English results will be accompanied by a description of the French data for each question.

Lastly, we would like to express our gratitude to the partner patient groups who endorsed and distributed this survey, and we are thankful for their unwavering support. In these results, we will showcase the visual representations of the English survey results, complemented by detailed descriptions of the corresponding data from the French survey. Your participation and contribution have been instrumental in advancing our mission toward accessible and effective COVID-19 treatments.

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Melanoma Treatments: Understanding Your Options

This page explores the various treatment options for melanoma and discusses the latest advancements in the field. Your healthcare team will discuss the best melanoma treatments for you and work with you to develop a treatment plan.


Surgery is the primary treatment for early-stage melanoma. There are several surgical approaches, including:

  • Wide Local Excision: This involves removing the melanoma along with some healthy tissue surrounding it. The extent of the removal depends on the thickness and location of the tumor.
  • Sentinel Lymph Node Biopsy: To determine if cancer has spread to the lymph nodes, a sentinel lymph node biopsy may be performed. If cancer is present, more lymph nodes may need to be removed.



Immunotherapy is a promising approach that harnesses the body’s immune system to fight cancer. Various types of immunotherapy drugs are employed in melanoma treatment, including cytokines like interferon alfa-2b and interleukin-2, which help immune system cells communicate and help control the immune response. Additionally, immune checkpoint inhibitors like Ipilimumab, Nivolumab, and Pembrolizumab are used to block checkpoint proteins that cancer cells use to evade immune attacks.[1]

Targeted Therapy

Targeted therapy targets molecules within cancer cells, such as proteins, that play a role in promoting cell growth and division. By focusing on these molecules, targeted therapy drugs inhibit the growth and spread of cancer cells while minimizing harm to healthy cells. Approximately half of melanoma skin cancers exhibit mutations in the BRAF gene, which drive uncontrolled cell division. MEK and C-KIT gene mutations are less common. Patients with locoregional or metastatic melanoma are often tested for these mutations, and those testing positive may respond to specific targeted therapy drugs.[2]

Radiation Therapy

Radiation therapy employs high-energy rays or particles to destroy melanoma cancer cells. It is used for different purposes, including destroying cancer cells, reducing the risk of cancer recurrence after surgery, and providing relief from pain or symptoms in metastatic cases. External beam radiation therapy, delivered by a machine, is the primary method for treating melanoma skin cancer.[3]



Traditional chemotherapy is not as effective in treating melanoma as some of the newer therapies. However, it may still be considered in certain cases, such as advanced melanoma that doesn’t respond to other treatments.


Clinical Trials

Participating in clinical trials can provide access to cutting-edge treatments and experimental therapies. Many breakthroughs in melanoma treatment have come from clinical trials.

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).


We are here to help. Call us at 1-800-460-5832 or email

Learn about other types of skin cancer:

Basal Cell Carcinoma

BCC is the most common cancer in the world, with incidence exceeding that of all other cancers combined. BCC can develop anywhere, though it is most commonly found in sun exposed areas.

Squamous Cell Carcinoma

Squamous cell carcinoma (SCC), which begins in the keratinocyte cells, is the second most common skin cancer. While SCC usually develops in areas that have been exposed to the sun, it can also manifest in burn or wound sites.

Merkel Cell Carcinoma

Merkel Cell Carcinoma (MCC) is a rare non-melanoma skin cancer. It can develop in the merkel cells, which are found in the deepest areas of the epidermis and hair follicles.

[1] “Immunotherapy for Melanoma Skin Cancer.” Canadian Cancer Society, 2015, Accessed 27 Oct. 2023.

[2] “Targeted Therapy for Melanoma Skin Cancer.” Canadian Cancer Society, Accessed 27 Oct. 2023.

[3] “Radiation Therapy for Melanoma Skin Cancer.” Canadian Cancer Society, Accessed 27 Oct. 2023.

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