BIO

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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Winnipeg, Manitoba

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North Vancouver, British Columbia

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Chilliwack, British Columbia

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West Vancouver, British Columbia

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Surrey, British Columbia

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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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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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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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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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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