Dorothy’s Story

Regina, Saskatchewan

When you read my story, you might think I’m terribly unlucky or lucky—depends how you look at it. I realize that’s an awful pun, since I have metastatic—stage 4—uveal melanoma, which is melanoma that grows inside your eye and has now spread distantly to my liver. It’s a very rare disease, completely different from cutaneous (skin) melanoma, and like many cancers, it tends to be “silent” in that one does not see it or feel it until it is advanced, unless one has regular eye check-ups including a retinal scan. It generally cannot be seen or surgically removed. One also needs to be vigilant in getting regular scans of liver and chest at least, and there is no 5-year danger zone, and no remission if it spreads. It can recur or spread through the blood, and the resulting lesions are often quite tiny. That also means educating people, including medical professionals, about the need for vigilance, and unfortunately that kind of awareness is not widespread, even among doctors. The jury is still very much out on the causes, and since it is rare it often does not get much attention from fundraising groups or pharmaceutical companies. I have lists in my head of all the things I’ve learned throughout the years of living with this disease, as well as all the things educated, caring, well-intentioned people—friends, colleagues, family members—have asked or said that mean tirelessly explaining things. I can also say I’ve learned how inconsistent care and expertise is in our Canadian healthcare, and I’ve been frustrated by barriers between provincial and national care, as well as gaps in funding for patient support. I know if I didn’t have the financial resources and were less privileged in terms of mobility, education, and health coverage in Canada, I’d be in a much more precarious position. I’m also lucky that someone noticed something and referred me; if I had a list, my first hero would be the optometrist, as well as the ophthalmologist, who just happened to be trained in the ocular oncology unit at Princess Margaret Cancer Hospital, the ocular oncologist who has followed me for years now, and the medical oncologist who continues to follow me, despite having way too many patients from across the country! My sons have also been one of the foundations that keep me going, despite dealing with all this while going through the rough years of adolescence and young adulthood.

My story begins in April 2016, when I went to my optometrist in Regina, Saskatchewan, for a check-up; it was only the third or fourth time I’d done this since I moved there in 1993, as I had pretty much 20/20 vision most of my life, and I wanted to get a check-up but make sure it wouldn’t conflict with my work schedule. But as an English professor, much of my teaching involved reading from books or papers in front of a class, and I was finding it a bit more difficult to find pages or focus on the texts; I also was a regular practitioner of yoga and noticed my balance was a little “off.” I was in a yoga class looking at the sign on the door, and then blocking one eye and then the other; my left eye seemed worse. So, there I was going through the routine eye exam, and part of that included photos of the back of the eyes with a big camera. It was only when she looked at the photos, and then sent me back to redo these, that I started wondering what was up; there was a shadow on the edge of my left eye, and she said it was probably a freckle. But she’d refer me to an ophthalmologist on call the next day just to be on the safe side.

The next morning, I went to Dr. Garcia’s office, and he did a full exam that included a huge machine with a light, and then he did an ultrasound. I’d never had an ultrasound of my eyeball, and never even knew something like that was possible! He told me that I had uveal melanoma, and then started listing all the appointments I’d need: I’d have to go to Toronto’s Princess Margaret Cancer Hospital for a full exam, they might have to insert a radiation chip, and I’d also need CT scans of my abdomen and chest to ensure it hadn’t spread to other parts of my body. I was nodding and listening, and then walked out and called my second son—I have three—who was in high school, and asked if he would pick me up from the hospital. I was clearly in shock, and still feel terrible for blurting it out to a teenager on his lunch hour. When I got home I looked it up (of course) on the internet. I called my eldest son, at that time in university at Western in London Ontario, and told him I had to go to Toronto; all the appointments were scheduled very quickly for mid-April, and my first thought was how I’d teach the last week of classes and invigilate final exams. My eldest son met me in Toronto and we spent the next day at PMH undergoing multiple tests and seeing multiple technicians and doctors. Dr. Krema, the ocular oncologist, confirmed that I had uveal melanoma in my left eye, that it was medium to large in depth and diameter, and that I had the option to remove the eye altogether or have vision-preserving brachytherapy—a radiation chip—surgically implanted for a week. He said the survival and recurrence rates were about the same. I had brachytherapy in early May, went through the surgery to place it and then a week later to remove it; it was excruciating, and every day my son had to clean out the eye and apply drops. I learned that the lesion was indeed large—9 mm in height and about 17 in diameter—and located in the choroid but had infiltrated the ciliary body. I knew that there was about 50% chance of metastatic spread, typically to the liver, and if that happened there was no cure. My vision in the left eye, by the way, was about 20/30 at that time. I also learned that sun exposure was not a cause, and that it probably wasn’t hereditary. I went back with all three of my sons in August 2016 to see if the radiation had shrunk the lesion, and it had! I was then told any follow-up bloodwork, ultrasound and chest x-rays for distant spread would be done in Regina.

I traveled to PMH every 3-6 months for checks on potential recurrence, and I also developed retinopathy and macular edema [swelling] as well as radiation-induced glaucoma. The lesion is still there now, but it has shrunk to about 2 mm. I had cataract surgery in 2017, but my vision in that eye decreased further, because of the size and location of the lesion. Today, vision in the left eye is at the point of counting fingers. More exhausting was lobbying for the follow-up in terms of metastasis in Regina, and the communication between provinces was terrible: Dr. Garcia continued to get reports from PMH, but that communication did not go from Regina to PMH. It wasn’t until a year or so later that I had my first MRI in Regina, and the reports and images weren’t shared with PMH.

It was in late 2020 that the routine ultrasound noticed suspicious growth in the liver, so I begged the doctor to send this result to Dr. Krema, who then referred me to Dr. Marcus Butler at PMH. In March of 2021 I went to PMH to have an MRI, and it confirmed two lesions on my liver, and the next part of the challenge began; the lesions were small, so Dr. Butler and the multidisciplinary board reviewed the previous images from Regina and noted that one of them had been there back in 2020, but not caught. The approach was what’s called “watchful waiting,” which meant regular MRIs in Toronto, until the board determined a biopsy could be attempted in October 2021; several samples didn’t manage to catch the lesion, so I went back to watchful waiting until one of the lesions grew and another biopsy was done in June 2022. It confirmed that the lesions were indeed metastasis of uveal melanoma. That news was devastating. Dr. Butler recommended I go on a “new” immunotherapy drug called Tebentesfusp (Kimmtrak) that had just been approved in Canada for compassionate access. I’d have to have at least the first three infusions as an inpatient at PMH, and then they would work on getting these transferred to the cancer clinic in Regina, but I would be the first patient to receive it there.

At that point, of course, not only was I still working as a professor, but I’d taken on the role of Assistant Dean. All three of my sons had entered university—two and now the third in the Toronto area—so going to Toronto was one of the blessings, though admittedly the expense left me with a dilemma in terms of working and getting weekly infusions. Side effects for the first three infusions were difficult, including excruciating itchiness, rash, and peeling skin, as well as fevers and exhaustion. But by the time I was moved to the “chemo daycare” unit at PMH for the fifth dose, it was more manageable, and smooth in terms of side effects—apart from brain fog and fatigue, as well as depigmentation and peeling skin.

I’ve been on these infusions for a year in Toronto, choosing to take advantage of the pandemic move to remote delivery and support from the PMH Lodge to stay where I could walk to the hospital, see more of my family, and know that I was receiving care from one of the top researchers of uveal melanoma in Canada! The nurses giving the IVs each week are also fantastic. Some dear friends in Regina took on the role of watching my house. I continued to work remotely, but with some workplace accommodations in terms of commitments and my energy levels.

I still ruminate on how long that lesion was in my eye, or how long it was growing. The pandemic, my own busy life, family responsibilities made me less vigilant than I might have been. God gave me 20/20 vision, but uveal melanoma rendered me nearly blind in one eye; by the way, my right eye still tests at 20/20, and I can still drive and work, and read thank goodness. I have problems with depth perception and double vision that means more care on stairs, hills, and my days of wearing eye make-up are long gone. But frankly one of the good and bad things about this disease is that many people can’t really tell how serious it is, or what I’m going through. Immunotherapy and new treatments don’t “look” like classic chemotherapy in terms of side effects, and the infusions will continue every week until they don’t seem to be keeping things stable. So far, the lesions have not grown. I am also grateful for the phenomenal care of my medical team. Finally, if it were not for the nudge and financial support of Save Your Skin, especially paying for my airfare to start Kimmtrak, I might have decided just to let the lesions progress for months. It’s tough when your disease is “silent” in that way—by the time symptoms appear, it might be too late to treat. So, I urge people to know that melanoma is not “skin cancer” because melanin is in cells throughout our bodies, and can mutate anywhere; at this point, the causes are still under research, as are new treatments. And, even if your lives are busy with family, careers, financial responsibilities, and everything else, don’t ignore those eye exams; my eyes are such an enormous organ in my life and work, and I frankly never thought I had to worry about them! Cutaneous melanoma can typically be seen and monitored more easily. I have learned much, and there is still even more I do not know—even about the prognosis of metastatic uveal melanoma [MUM] so my groups on social media have also provided support, hope, and information worldwide. If you are interested in contacting me, feel free to request to connect below.


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Courtney’s Story

Winnipeg, Manitoba

My story began May 25, 2020, when I was diagnosed with choroidal melanoma. The only symptom I was experiencing was some blurry vision, so I thought “well ,maybe it’s time for glasses!” So, off to the optometrist I went. He couldn’t figure it out so I went to a specialist and that’s where my journey began. It was seven days after I had gotten engaged, so at what was supposed to be an exciting time of my life I was obviously devastated.

At the initial diagnosis, I don’t think I even heard what the doctor was saying as I was in my own zone thinking “is this really happening?” Thank goodness my now-husband was there to get all the details, as he was more attentive than I was at that moment. I was so scared and the only thing I could say was “am I going to die?” with tears streaming down my face. I don’t think my doctor knew what to say nor do I remember what he said either. At that time my son was 13 years old (he is now turning 16), and that I had to break this news to my parents plus having to explain to my son that I was sick was quite possibly the worst thing ever, as I wasn’t sure how he would react or what his thoughts would be. But he took the news like a champ. I’m not sure if at the time he really understood what was going to happen because of course I surely didn’t. I was terrified, but I kept my head up and did what I had to do.

Once I went back for further testing and whatnot I was more stable in my thinking process and able to grasp everything that was being said to me. I was told it was caught early, which was great to hear. The only crummy part was that treatment was not available in my home Province of Manitoba and my only options were to travel to British Columbia, Ontario, or Alberta. I chose Alberta, as I have family there and just felt more comfortable going there.

Before I knew it I was off to Alberta. Everything happened so fast. So there I was in Dr. Weis’s office in Calgary, Alberta, not really knowing what to expect or what kind of person he would turn out to be.

Dr. Weis turned out to be the best! He is always compassionate and takes time to answer all of my questions. He sure has a way to put a person’s mind at ease and is always forthcoming and helpful. After my first initial visit I was to go home and wait until my surgery date, which was surprisingly booked very quickly, and then back to Alberta I went. The initial plaque insertion for the brachytherapy went great. The aftermath of the removal not so much. I was in so much pain it was unbearable. But with the swift action of nurses and Dr. Weis, my pain went away and I was able to begin healing.

After some bumps in the road, I went for my follow-up back home in Winnipeg and to my surprise the radiation was working and the tumor was beginning to shrink! I wasn’t sure what to think going in for my follow-up, but I sure breathed a sigh of relief coming out of there. I go for yearly scans now and blood work, etc., which always causes an abundance of anxiety but right now everything seems to be going well. It will be three years in May, 2023 since my cancer journey began. I can’t believe how fast time flies. I have my off days but other than that I think I’m doing well. I’ve been told by many that the strength that I have shown throughout is inspiring, which is so wonderful to hear. I guess I have always thought that strong is the only thing I can be (besides a few off days). I’m not ready to leave this world yet. I’m only 36 years old and I have so much life left in me, I don’t plan on going nowhere for a very long time.


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Sue’s Story

North Vancouver, British Columbia

My journey began in 2012, when my esthetician found a black spot on my heel during a pedicure and insisted that I see an MD. I could not see the spot without contortions and when I did look at it, using a mirror, it just looked like a dark rough area of skin on the edge of my heel. It was Christmas, and with all of the busy-ness I delayed seeing a doctor until 2013 when the spot bled. I was diagnosed with a BRAF positive pT4a melanoma on my right heel that had spread to one lymph node in my groin.

I was devastated, frightened, and resigned to an early death. My oncologist told me I would likely succumb to the disease within 5 years. My treatment plan involved excision of the lesion and surrounding tissue, removal of the superficial lymph nodes in my groin and “wait and see”. I did not meet the criteria for any of the drug trials available at the time.

After my initial diagnosis and treatment, my original oncologist, who was a melanoma specialist, retired, and I was moved to another BCCA oncologist whose specialty was hematology. I was followed every 3 months by him for 2 years but did not feel comfortable with the depth of his assessment. In 2015, after my own research, I requested to be moved to a female oncologist at BCCA whose specialty was melanoma. I feel this move saved my life. As a part of my original appointment the new MD did a CT scan and PET scan which revealed my melanoma had metastasized to the lymph nodes in my pelvis and around both kidneys as well as into the bone of my humerus. I was crushed and terrified. My daughter had just announced the arrival of my first grandchild; I wasn’t finished living.

At the time of my original diagnosis in 2013, the immunotherapy medications now available were in the experimental testing stage. However, in 2015 they were being made available by the drug companies for final testing. After discussions of treatment options, my oncologist contacted a company and requested that I be put on Pembrolizumab (Keytruda) on a compassionate basis. Over the next 2 ½ years I received 42 doses of the drug free of charge as a part of the company’s clinical trials. At that time Keytruda was only available in the US at the cost of approximately `$100,000/year. Within a year of taking the drug, the lesions on my kidneys and bone shrunk and disappeared. However, after the initial shrinking, the one in my groin began to grow again. The decision was made to surgically remove the groin lesion in 2017.  I did have minor side effects from the drug, such as vitiligo (loss of pigmentation in patches on my skin, eyelashes, and eyebrows), skin lesions, and flare-ups of my arthritis during this period. Eventually, development of swallowing difficulty for both liquids and solids (dysphagia) required I stop taking the drug. The oncologist was concerned it may also be a drug side effect, as one of the causes of dysphagia is autoimmune disease. I had lost 25lb as I was unable to eat. At that point I was told I was in remission – now referred to as no evidence of disease (NED). Throughout this period, I was supported by my loving family, cherished friends, and a counsellor trained in dealing with cancer patients.

Since 2019, when I stopped taking the drug, I have been followed regularly with CT scans and blood work and have remained NED. My grandson is 6 now and I have cherished every day.

To someone who is facing a new melanoma diagnosis I would say: 1. There is always hope. Treatment options are expanding every year resulting in successful cancer management and life extension. 2. Do your research to understand the disease and current modes of treatment using trusted internet sites. 3. Take advantage of groups such as SYS to provide support and information. 4. Be your own advocate and express concerns if you are not comfortable with your treatment plan. 5. Seek help to deal with the overwhelming emotional toll this disease brings to you and your family.

It has been 10 years since my initial diagnosis. I am still here. Yes, I continue to struggle with dysphagia, but it is being managed. I have watched my grandson grow, hugged and visited my family often, learned how to make pottery, and appreciated the simplicity and joy of day-to-day life. There is always hope.


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Ani’s Story

Chilliwack, British Columbia

I was diagnosed with stage 4 metastatic melanoma when I was 32 years old. When the first tumor was found, my cancer had already metastasized and the primary location was unknown. I had surgery in 2016 to remove the mass, and unfortunately was left with close margins that required radiation.

Soon after, I had scans which showed that the cancer had spread to my liver and lymph nodes and I was treated with Pembrolizumab. Over the next two years I received 25 cycles of Pembrolizumab, had multiple surgeries and more targeted radiation to treat a number of new lesions which presented in my lungs and subcutaneous tissue throughout my body. I suffered mainly from the side effects of the treatments, however was able to resume a relatively normal quality of life through most of this period. I responded to this treatment and eventually had a full response, resulting in a period with no evidence of disease!

Although it was short lived, it was so encouraging to have responded to immunotherapy and I have been optimistic about the advances in melanoma treatment and my chances of survival. My cancer returned months later in 2019 and I was treated with four doses of combination treatment Ipilimumab plus Nivolumab, followed by Nivolumab alone. I had a number of surgeries over the next year and showed some signs of response to treatment. Eventually, my disease progressed and I started my search for alternatives to the approved standard of care. I am currently one year into a clinical trial at Princess Margaret Cancer Center.

I was connected to Save Your Skin Foundation when I was looking into clinical trial options. I had no idea at that time that Kathy and her team at SYSF would become such an important part of my story. Not only has SYSF made the travel to receive treatment possible, but they have become part of my support system. I cannot be more grateful for this organization and the people behind the scenes who make it possible.


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Martin’s Story

West Vancouver, British Columbia

Signs of a brain tumour are easy to ignore. I hate to admit it, but I said that all I needed was a neck massage and new glasses to deal with three weeks of left sided foot drop and numbness and a week or so of stumbling. It was the stumbling that made my wife insist I call my family doctor. My doctor listened to my symptoms on a phone appointment and I had a brain CT three days later. She is so smart; of course, when I described the symptoms to my doctor, it clicked that the ”having to lift one’s foot” is actually “foot drop,” and the odd sensation in the foot is “numbness.” There is a definite progression from an “odd feeling” to a “symptom.”
At the CT, I had an inkling something was wrong by the way the radiologist did not come to say hello after the procedure. Usually, we do a doctor-to-doctor debrief to let colleagues know it is all OK, unless it isn’t. My family doctor came to my home the next day to break the bad news in person. Sitting there in the sunshine with the grandkids playing in the yard listening to her tell me I had a brain tumour was quite the moment.  She left me with some Dexamethasone and Ativan as the mass in the brain was big. It took just four days to get an organic diagnosis. Four days later, I had a CT of my chest and abdomen which found eight other masses. That told us that I was riddled with cancer. Not a good day. Later, we would find another metastasis in my eye when the immunotherapy caused a rare papillitis.
I had a chest biopsy 14 days after the Brain CT and stage 4 melanoma diagnosed within days. There was another instance of that doctor-to-doctor thing: the one who stabbed me (very skillfully) said, as I was recovering from the day surgery, that the tumour looked black and he thought it was melanoma, which was confirmed a day or so later. So, within three weeks of calling my family doctor, I had a pathological diagnosis. I saw my oncologist two weeks later; this was the first glimmer of hope in a bleak month.
There was some back and forth about the brain tumour and I had a distressing visit with a neurosurgeon who showed me the MRI. It looked like a lot of the right side of my brain was swollen and the tumour looked big and deep. Surgery would leave me in a wheelchair. The alternative was provided by the neuro-radio-oncologist: she said I could be treated with the “gamma-knife” which is accurate down to one millimetre, though it would not necessarily cure the brain tumour as it might not get all of it. I realised that talking about cure was overly optimistic and I should go for being able to walk for as long as I can.
Next, the tumour board met, and I got my therapeutic diagnosis seven weeks after presenting to the family doctor. I was going to be treated with gamma knife for the brain tumour and then receive dual immunotherapy. I did also get a liquid biopsy, as my research is in genetics, and I have a friend who does this (though it was done by a different group to keep things straight). Interestingly, a BRAF mutation was seen that was not in the lung biopsy. I had my gamma knife stereotactic radiotherapy 9 weeks after diagnosis, then began to receive the dual immunotherapy just 12 weeks after my first appointment, with a further 25 medical appointments/scans/biopsy/bloods etc. during that time. Three months after starting immunotherapy, the tumours were shrinking and the glimmers of hope became a lot brighter.
Of all of these procedures, the chest biopsy was the most dangerous – the largest of the chest lesions was really deep, so seven inches of steel was put into my chest. This would have been fine, as I was totally numb with local anesthetic, but because I am a doc they kindly let me watch it on the screen. Oh look, there is a huge sword deep in my chest right next to some major blood vessels! I better not move. Definitely a birthday to forget!


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Harvey’s Story

Surrey, British Columbia

My name is Harvey; I am a husband, father, and grandfather from British Columbia. Before my diagnosis with melanoma, my wife and I loved to travel and were active in various sports. In November 2016, my wife noticed a pimple on my back. My GP performed a biopsy and determined the mark was melanoma and within a month I had surgery to remove it. The surgery left an 8-inch scar on my back, but I was happy the spot was gone. Five years later I had a cough; I returned to the doctor and received a PET scan that determined the melanoma had metastasized to my right lung. I underwent major surgery in December 2021 and also started immunotherapy at the cancer clinic in Surrey, BC once a month for a series of 13 treatments. I completed these treatments on December 13, 2022. At this point, a subsequent PET scan has also determined that, although the melanoma has not returned in my lungs, there’s evidence that it may have moved into my adrenal glands. I have another PET scan scheduled in March 2023.

Since my lung surgery in December 2021, melanoma has basically become the complete focus of our lives. The mental health aspect of my journey has been overwhelming on both of us, especially the unknown of this terrible disease. Melanoma is a very serious and sneaky cancer, and it’s important for anyone dealing with it to stay very proactive with your oncologist in order to make them aware of any changes while you are fighting it. I share my story only to help anyone dealing with this tricky cancer.


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Violetta’s Story

Edmonton, Alberta

In my late teens to early twenties, I was healthy. I was in nursing school, I ate well, and I worked out several times a week. I also tanned between two and five times a week: the tanning salon was next to the gym and I had an unlimited pass. I thought I was invincible, so for at least five years I tanned at this frequency without considering the risks of melanoma or any other skin cancer.

The mole that was identified as melanoma in 2009 was one of many that had been on my body for as long as I could remember, but it was on my upper back so I couldn’t see it easily. It was my mom who noticed that it was growing and changing colour. I was so busy with school that the mole wasn’t a priority, though that changed when a lymph node appeared near by right clavicle. I went to the university clinic, where the doctor thought the lymph node was a cyst and and that the mole was normal. I insisted on a referral to a dermatologist, which I am so glad I did, because I was diagnosed with stage III melanoma. The dermatologist told me that my chances of five-year survival were 50%, which was devastating news at 25 years old.

I started ipilimumab on a clinical trial in 2009 as the alternate standard of care, interferon only extended survival by 1 year.  Between 2010 and 2012, I had a sentinel node biopsy that revealed two positive lymph nodes, a radical neck dissection and removal of lymph nodes.  In 2012, I began having migraines. which were due to a golf-ball sized tumour in my right temporal lobe. I  had brain surgery and 5 months later a round of stereotactic radiation. At this point, my diagnosis was stage iv malignant, metastatic melanoma and I developed epilepsy as a side effect of radiation.I had a delayed response to ipilimumab but even before brain surgery my brain tumor was shrinking.— I  celebrated my 10 year “cancerversary” in June 2022!

In several ways, my story highlights the importance of preventative measures. My melanoma likely developed in direct correlation with my use of tanning beds; I might have caught the mole earlier if I had been doing skin checks. After I was diagnosed, I went back to the tanning salon and told the owner I had been diagnosed with melanoma. His response to me was: “my mom had skin cancer. It’s no big deal. It’s like getting over the flu.” It’s clear that individuals who might be using tanning beds are not being looked after by people in the tanning industry, so I encourage people now to be proud of their natural skin.


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Gord’s Story

Edmonton, Alberta

In October 2020, my wife and I were driving home from a Thanksgiving and wedding anniversary trip to Jasper National Park when I felt a pain in my right side.  A week later, the pain persisted, and I saw my doctor for blood work and an ultrasound. This was followed up with a CT scan, which prompted an appointment with my dermatologist and an oncologist in November.  I had already been seeing the dermatologist; in 2014, I had melanoma removed from my shoulder, which had likely developed due to sun burns in my teens and early twenties.

At this appointment, I was told I had stage 4 metastatic melanoma, which had spread to my liver and lungs.  The oncologists discussed immunotherapy treatment with me and it was decided that I would receive ipilimumab + nivolumab. The journey ahead reminded me of the story of David and Goliath— but I knew that with faith, I would stay strong and fight this cancer.

Overall, my first three infusions of the treatment were successful— while I did react to the second dose of treatment, I did not experience other side effects during this period.  However, in December I began to have some facial and swallowing issues, and an MRI discovered that the cancer had also impacted my brain.  I underwent gamma knife surgery which was successful.  However, soon after I began to notice that my near-sighted vision was diminishing, and eventually so did my far-sighted vision, causing me to wear multiple pairs of glasses at a time.  It turns out I was experiencing a rare side effect of immunotherapy, so we paused those treatments.  Into March and April of 2021 my vision wavered and at certain points I was considered legally blind.

In April, I also experienced another pain in my side, much like the first one in October 2020. A CT scan revealed that the tumour in my liver had grown back even larger. At this point they started immunotherapy again, alongside five doses of radiation.  After these five doses, the tumour had thankfully reduced in size again!  My next procedure was in July, when I underwent another gamma knife surgery for a new lesion on the brain.  I then had two eye surgeries in August and September 2021; a consultation with my ophthalmologist had determined that inflammation in my eyes from the immunotherapy had caused my irises to bind to my lenses and also impact my retinas.  These surgeries were successful and I have gained back a large portion of my vision, though unfortunately I am still unable to drive.

At this time (October 2022), I am still continuing immunotherapy treatments. I have stayed positive throughout my cancer journey with no complaints, and I know that with continued faith in God and the love and support of my wife I will continue to fight and win this battle.


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Karen’s Story

Guelph, Ontario

Here is a little bit about my Melanoma journey.

In 2018, things changed for me, as I was diagnosed with BRAF stage 3 melanoma skin cancer. At the end of February 2018 I spotted a mole on my right chest, it was black with dry flaking around it.

I went to see the family doctor right away and she referred me to a dermatologist.  When I received the appointment from the dermatologist it was not for six months.  I called immediately to see if I could get in sooner, I got in for early March 2018.

The dermatologist said “I do not think it is cancer but let’s do a biopsy.”  A week later, on March 15, I was in a meeting and my phone rang.  It was the Dr he said, “Karen, sorry, you have melanoma.”  He then proceeded to tell me he made appointments with the surgeon already.  It was a week later.  I do not remember anything at all he was telling me.  My husband asked me questions I could not remember a thing.  I dropped the phone and went into panic mode.  My emotions were running very high and I was pushing my husband away as I wanted to look after everything myself.  The word cancer scares anyone beyond words.

I had two major surgeries, one in March 18 on 2mm mole and 5 lymph nodes, the second at the end of April 2018, which removed 15 more lymph nodes. In the second week of May I saw my oncologist, Dr Rajagopal, who is the only melanoma specialist in Halton and Peel Area. I was shocked to learn that the medication I required was not covered by OHIP (Ontario health insurance plan); it had just been approved by Health Canada in 2017. The drugs were very expensive, at $20,000 per month. I also applied to the Trillium Health Fund, but my employer insurance provider that I had been paying into for 15 years covered 100% of the cost. Otherwise, I would have had to spend my retirement savings on the medication. I was told that without accepting treatment, I would die in 2-3 years. While there were some side effects, such as high fevers and migraines, I knew the benefits would outweigh the costs.

I wanted to prove to myself and to other cancer patients that you can do anything.  Since being diagnosed and throughout my treatment, I did my first 5km run with my husband running beside all the way. Even if you are in treatment, you can still take care of yourself and your body.

I came in contact with Save Your Skin when my company was bought out. I had no benefits with the new company, so the Dr. referred me to them.  This group has been very supportive, a great group and I am glad I am volunteering my time for a great cause.  Kathy and Natalie are very close friends to me outside of the business also. Save Your Skin is a family and we watch out for everyone and help each other.  I have been very involved in Save Your Skin awareness initiatives and am on the board.

If it was not for my support team, my hubby Brad Buckler, and the great team at Save Your Skin, I would have thrown the towel in long time ago.

In December 2020, I had a reoccurrence of the melanoma in my lymphatic track and side of my lung.  They could not do surgery where all the little tumors were.   My doctor and I decided to do immunotherapy. I did my first one January 12, 2021, felt great for up to two weeks.  After that it attacked my muscles and vocal cords etc. I could not walk without a cane; I could not talk. The oncologist referred me to a rheumatoid doctor and I was on steroids for 6 months. I was scheduled to do more treatments, but I said no more. The Oncologist agreed with me. I found a physio therapist that would work with me to get my muscles back after no walking, or talking. In a month I was walking with no cane and lifting my arms, etc.

In November 2021, the Dr said there is no signs of cancer or tumors. We did another CT scan in August and we got the all-clear NED. I am living life to the fullest going to the cottage, hiking, doing things I want to do. I tell other people exercise, eat clean, and drink lots and lots of water to help stay healthy.


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Rob’s Story

Whitecourt, Alberta

Hello.  My name is Rob Stauffer.

My melanoma journey began in May 2015 with a skin check of my right ear by my wife and follow up visit to my general physician. The Stage 1B positive test from the shave biopsy resulted in the surgical resection of my right ear, negative sentinel lymph node biopsy and plastic surgery of my ear and cartilage. I felt blessed in that the prognosis looked great and I had no significant cauliflower ear. After my surgery I had my skin checked by a dermatologist quarterly, annually by my general physician, and monthly by myself and my partner. I immediately returned to work and continued to enjoy my passions of being in the mountains hiking and fishing, and travelling in the outdoors with adjustments in sun prevention measures, such as living the five sun safety rules.  Life continued as it had in the past – normal.

In the summer of 2018, I started to experience some minor vision and speech issues which were monitored by my general physician for a few months.  These issues continued and in November I was diagnosed with metastatic melanoma of the brain and lung. I was treated surgically, with a craniotomy and gamma knife, at the University of Alberta Hospital. I then had immunotherapy treatment at the Cross Cancer Institute with Opdivo (nivo) and Yervoy (ipi). The decision to be treated with nivo and ipi saved my life. However, I did have some bad side effects and the treatment was briefly shut down. My immune system was full throttle, and I  was afflicted with hepatitis, pneumonitis, and edema. On the bright side, this meant that my immune system was working. I was able to recover with some steroid treatment which reduced the impact, but still allowed the immunotherapy to address the cancer. I was still working at this point. The immunotherapy program started up again and after a month, I continued with just nivo.  However, a few months later I had some further side effects and my treatment needed to be paused again. I was also ill, so working was impossible.  Since then, I have had no further immunotherapy treatment, but no increase in my tumours. I have since started on another journey of my “re-invention.”  I feel fortunate to have been treated by such wonderful doctors and to be alive. When I reflect back now, I really did not understand the many possibilities available for treating my cancer. I have learned that each person is unique and not everyone takes the same route.

My journey to address some of the secondary effects of my medical treatments continues. As a rural Alberta resident continuing my medical, health, and healing journey, I am interested in participating in support groups to learn other people’s experiences, to assist where possible in improving others’ health outcomes and experiences and to focus on my health, healing and enjoying life.

I am glad to share with you my experience in any way that I can, and to assist you in your journey.


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