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Laurence’s Story

Vancouver, BC

It was around 1pm and my partner and I were playing with monkeys on a beach in Thailand. That’s the moment my life changed forever.

Out of nowhere, as if someone had just pulled a curtain down over my right eye, this “black line” fell about a quarter of the way down over top of my vision. It was super strange and I immediately asked my partner if there was something she could see in there, but she said no. Apparently it looked fine. I had an instant thought that, maybe because we had been doing a lot of scuba diving this trip, perhaps a blood vessel or muscle became damaged due to the pressure under water.

A week later, once finally arriving back home, and this black line still very present, I went to a walk-in clinic. And from that first doctor’s visit, it took another 6 or 7 days and 4 more doctor’s appointments before I finally heard the end result. That’s also when I heard the scariest 3 words ever said to me in my life: You Have Cancer.  Ocular Melanoma.

Since I can remember, I’ve always had such an appreciation for the pure natural beauty that this world is, and what it means to be able to reflect on that miracle alone. To be able to see one’s place in this universe, on this planet, in this life… to simply be aware of what it is to be alive.

I could never get enough of it!

Growing up on Vancouver Island surrounded by endless natural beauty, and having the freedom to grow and learn in that space, was a priceless experience in shaping this view and appreciation I had developed early on. It inspired me as an artist, a musician, and kept me curious about expanding my world infinitely. It gave me the inspiration to pursue those dreams and passions and to let Experiences be my guide. When I graduated from high school, I moved to Vancouver with my band to become rock stars and follow the path of the arts.

Since that move 18 years ago, I have witnessed and experienced my dreams manifest and become reality so many times over, in so many different ways.

It was the reason I met the love of my life.

It was also the reason I found martial arts.

Bujinkan Budo Taijutsu, to be precise. The art of the Ninja. It’s an ancient Japanese art, comprised of 9 different martial art schools of the past and refined into one discipline. This art has been studied and passed down through centuries and, through the time of feudal Japan, the Ninja became known as assassins used to take out leaders of war to alter or prevent battles from ever taking place. But once I began to study the true art as passed down through the ages, and separated myself from what I thought I knew from TV and movies, a whole new appreciation and way of experiencing the world was opened to me.

Ninja were in reality farmers, peasants, and simple people not wanting to live under the harsh rule demanded of the time. Their outlook on life was that of Peace, Love, and Compassion for all things. For Life. But, as well, they had a very different view to fighting and conflict.

What mattered was Life and Death, not Winning and Losing. Fighting to win serves only the ego. Fighting to survive something that is intent on taking your life, is necessity. Whatever it takes to wake up in your own bed, or to protect those that are worth your own life, are the only reasons to engage in conflict or battle. Fighting, or preventing a fight to literally survive, is the only reason to ever engage.

I’ve studied this concept for 16+ years, traveled multiple times to Japan to study with my sensei and the Grand Master of the art. I’ve passed the one and only test given in the art, which is for the 5th degree black belt.

The test goes like this: you kneel on the floor in seiza (feet crossed under your butt, back straight, hands on your thighs, relaxed). The Grand Master stands behind you, holding a sword, and whenever he feels ready (meaning 1 second or 10 minutes, any length of time he wants), he will project at you for a split second the most intense feeling of “Death”, and then proceed to strike straight down on top of your head with the sword. Your test is to sense this intense feeling of “Death”, and to roll out of the way avoiding the sword. That is it. You need to know when your life is truly in danger, and then make the right decision. In modern times, a Boken (wooden katana) is used for this test, but originally, it was done using a real katana. Failure to survive was not an option. And yes, I passed my test the first time 😉!

So what do I do now? There is a very clear opponent trying to kill me, its intention is very clear. And I can’t roll out of the way. No matter which way I seem to move, I can’t escape. And I can’t even see my foe to face it eye to eye. In the past 3.5 years fighting, I’ve had 2 major surgeries, 3 separate rounds of radiation, changed my diet and tried immunotherapy, but nothing has worked thus far. Ocular melanoma, once inside the body, is very rare and can be extremely difficult to treat.

But just this April 2021, my life was changed again! I was introduced to Kathy Barnard of Save Your Skin Foundation. I was made aware of the foundation through my doctors at BC Cancer, who said it couldn’t hurt to give her a call.

It was one of the most important phone calls I’ve ever had the pleasure to make. A brand new treatment for ocular melanoma had just become available this year, but was going to require travel once a week from Vancouver to Edmonton. And not just once but for 12 treatments.

That would mean 12 plane tickets, 12 hotel nights, taxi’s to and from the hospital and airports… and unfortunately, I was responsible for all the expenses related to getting to my appointments. That is until I spoke to Kathy.

Save Your Skin Foundation has become my “secret weapon”. Now I have the ability and support to be able to fight back. Not to win this fight, but to ultimately have the best chance to survive.

Kathleen Barnard is a cancer survivor from 2003. In fact she’s a miracle. Not only for having beaten her cancer, but for creating this amazing foundation for people suffering from all forms of melanoma. She and her foundation have been taking care of All of the expenses I mentioned in order to get me where I need to be, and to eliminate the extra stress and pressure from the financial burden this would put on anyone.

It’s one of those scenarios you find yourself giving yourself a pinch every once in a while, just to make sure it’s not a dream. Well, I can tell you from the bottom of my heart that it’s no dream. Just a dream turned into reality!

To everyone at Save Your Skin Foundation, to all the donators and supporters, to anyone helping in the fight against All cancers, I thank you!

 

 

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Sara’s Story


Victoria, British Columbia

In 2006 I was diagnosed with stage 2 melanoma at age 29 and in 2018 with stage 4. I was always a candidate for melanoma (strawberry blond, blue eyed, sun burns as a child, more than 50 moles) and was receiving yearly dermatologist checks.

In 2006 a small pink bump started growing on my head. At my annual checkup while 8 months pregnant my dermatologist said it looked fine. I told him it bothered me and asked him to take it off. It turned out to be stage 2 melanoma. I had a 1cm margin removed. After my daughter was born I went in for surgery and had another 1cm margin removed and 7 lymph nodes. The margins and lymph nodes were clear. There was no further treatment required.
At the beginning of 2018 I just wasn’t feeling well. I would go to bed for a two hour nap after work and was nauseous when I ate. I also had rib pain that I finally went to the doctor about. He told me I had arthritic ribs and my tiredness was seasonal depression. I asked for blood tests and they came back as something was wrong with my kidneys. I was sent for three more blood tests to confirm that yes, something was up and referred for an ultrasound in April. After the ultrasound I was sent immediately to emergency to get a CT scan. The ER doctor told me that I had stage 4 cancer and to go home and get my affairs in order. I had over 14 brain tumours, the largest being 2.2cm, and too many tumours underneath my skin to count, some the size of golf balls. I had bone cancer in my legs, hips, pelvis, spine and ribs. There was a 10cm tumour on my right ovary, a 5cm one on my left kidney, a 2cm one in the middle of my right lung and small ones on my liver. After a biopsy I learned that it was melanoma but they never found a primary mole.
It didn’t look good, but I believed from the start that I would be cancer free. I had whole brain radiation for a week and then started 4 rounds of immunotherapy (ipilimumab and nivolumab). I had nausea, vomiting, slight rash and extreme fatigue but made it through. I then continued with Nivolumab every two weeks and the only side effect was fatigue. I also had MRI and PET scans every three months. I ended up having a lingering tumour above my right ear and got another week of brain radiation. It has not grown in a year so I believe it is now scar tissue. I had tumours in both femurs that were not responding to immunotherapy and had radiation on those spots.
I also had a new spot grow on my right foot during this time that my dermatologist said was not melanoma and wouldn’t take off. On my next visit I said I think it is something as it is new and he removed the spot. It was basal cell carcinoma. You must be your own advocate!
Spring of 2020 my scans showed no active cancer. Fall of 2020 I had completed 56 rounds of Nivolumab and started getting mouth sores. I am taking a break from treatment and will continue scans every six months for another three years. The last few years have been a blur but I am so grateful to be alive thank you to modern medicine and our excellent health care system. Don’t give up hope.

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Marcel’s Story


Prince George, British Columbia

Marcel’s journey is shared with us by his wife.

           Marcel’s journey with melanoma started in 2010 when we noticed that a pink, normal looking, healthy mole that he had all of his life had turned black. This mole was located on the left side of his temple. He went to his family doctor and his family doctor referred him to a Dermatologist. The Dermatologist told Marcel that he thought Marcel had hit his mole on safety glasses, and that it was filled with blood. He also told Marcel that a 31-year-old from Northern British Columbia wouldn’t have skin cancer. The Dermatologist performed a shave biopsy, but unfortunately it wasn’t enough to detect the melanoma and the results came back normal. We later found out that the Dermatologist should have excited the whole mole for an accurate pathology, when we sought out the opinion of a Plastic Surgeon in 2011. Finding the Plastic Surgeon is a personal story in itself, and we are very grateful that our stars aligned that day. The Plastic Surgeon was concerned with the mole and suggested that it be removed. The mole was finally excised accurately and a diagnosis of melanoma was confirmed. Following the melanoma guidelines, the Plastic Surgeon performed a five-hour surgery to completely remove the surrounding tissue and lymph nodes. Marcel was considered lucky, as the lymph nodes came back clear and the melanoma had not spread to any other areas of his body. Marcel’s melanoma was only 1mm in size.

Marcel’s chance of melanoma recurring in his lifetime was said to be less than 5%, and he was followed by the BC Cancer Agency for five years.In 2019, Marcel developed symptoms Bells Palsy on the left side of his face, which was later confirmed to be a misdiagnosis. Marcel had a brain tumour that was growing in the fourth ventricle of his brain and his brain stem. Marcel underwent a high-risk surgery to remove the tumour which involved removing a piece of his skull and entering through the brain stem, which controls the central nervous system; therefore he was at risk of death, paralysis, or permanently needing a feeding or breathing tube. Marcel came out of the surgery with double-vision. The pathology of Marcel’s tumour came back as metastatic melanoma, and the melanoma had spread to his lungs and spleen. There are no words to describe the fear and anxiety of a stage 4 metastatic melanoma diagnosis. The Oncologist’s dictation report said: although there have been tremendous improvements in outcomes for CNS metastases from melanoma, it is still an incurable situation with medium overall survival of approximately eleven months, and the two-year survival rate is around 30%.

Marcel is currently six months post-surgery and melanoma diagnosis. The left side of his face is still completely paralyzed, his left eye no longer works, and balance is often unsteady. Marcel is a true warrior: he returned to work within three months of surgery, he was able to ski a couple of times this season with his kids, andhis recent scans are showing excellent response to immunotherapy treatments. It has not been an easy road for Marcel: he has had many side effects from his treatment, and recently had to have a change in treatment due to a life-threatening complication. Marcel will be the exception, though, and he will continue to thrive and live his best life. He will see our beautiful children grow up, get married, and have their own children one day. Please take skin cancer seriously— please be sun safe, please check your skin monthly. Love the skin you are in, as all it takes is one bad ray on one bad day.

We want to thank our amazing family, friends, and colleagues for their ongoing support and love. We want to extend our thanks to the amazing Kathy Barnard, Founder of the Save Your Skin Foundation. Without her compassionate support, superior knowledge, and ongoing love for us, we wouldn’t be here today sharing Marcel’s story. Kathy, her beautiful Foundation, and the people we have met along the way, give us hope. Thank you! I personally want to thank my husband Marcel for being so open with his story in order to raise awareness of melanoma. You are my hero Marcel, always and forever.

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Heather’s Story


Saskatoon, Saskatchewan

I was diagnosed with stage 4 melanoma in July 2017. In August I started nivolumab, of which I had a total of twelve treatments. After the fourth treatment the tumours expanded and caused a blockage in my bowel. I lost about 40 pounds and refused surgery, and in a week the tumour shrank. I was eating and lifting one pound weights to try to get some muscle. I continued treatment till February, when a sinus infection got out of hand and I had half a cup of black pus removed from my sinuses. At this point, I also developed macular cystoid edima in both eyes, and lost my sight. I had it treated, and my sight returned, though I need glasses. At the worst I was seeing 20/200; now I’m at 20/40.
I had two more treatments in March, then stopped because CT scans showed that it wasn’t working. I had one more CT to give a baseline to track the progress of the cancer; that CT showed only two spots of scar tissue and no cancer. That was April 2018. My husband and I have celebrated our fortieth anniversary with our entire family, canoed, zip-lined, climbed a pyramid, gone swimming with dolphins, and attended all of the sport and music events of our grandchildren since then. Life is good, and I’m enjoying every minute of it.

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Chris’ Story

Abbotsford, B.C.

Early Signs

My story began sometime during the summer of 2017.  I had been experiencing lower back pain for a few months that nothing seem to relieve, but could, like anyone in their mid-forties, be attributed to any number of things.  Then, one Friday evening late that November, I felt an intense pain on my left side, just behind my lower ribs that dropped me to the floor.  The intense pain lasted only a few minutes, but things never felt normal after that.  I went to my GP the following Monday after being sent home from the ER that weekend with an all clear. He immediately sent me for bloodwork and an ultrasound of my gallbladder, suspecting I may have stones. 

Detection

I knew something wasn’t right when the ultrasound technician asked me to roll onto my side so she could take a look at my kidneys.  She took an awful lot of pictures, and typed way too many notes for it to be a simple case of gallstones.  I was at my GP’s office at 7:30 the next morning to get the results, and the ultrasound showed 3 liver lesions and large masses on both adrenal glands.

The Diagnosis

The week before Christmas 2017, I had a biopsy done of the largest liver lesion, that to everyone’s surprise, confirmed melanoma.  I was terrified because all I knew about the disease was that it was deadly and I knew nothing about the new lifesaving immunotherapies.  Additional CT and MRI scans confirmed that the disease was very advanced and the tumor burden was intense, with many of them doubling in size since the initial ultrasound.  At one point, an oncologist said that it would be easier to list the areas not effected then to list what was.

The ER

The lower back pain began to intensify, but I had very little idea of what was going on.  My overall health was deteriorating quickly and I had started to plan for the worst.  On January 20, 2018, I had gone to bed in such pain that I could not sleep.  Just after 1:00 AM, I asked my fiancée to take me to the ER due to the intensity of the pain.  I remember walking into the ER and sitting at the triage desk when a nurse, named Grace, took one look at me and said “we need to get him to the back now”.  Next thing I remember, I am waking up on a gurney with 5 nurses trying to get my clothes off, checking my vitals and trying to start an IV. It wasn’t until I saw the saw the fear and sadness in my fiancée’s eyes that I put the situation into perspective.  It was at that point that I realized I was partially paralyzed from the waist down.  The paralysis was caused by tumor growth on my hips and pelvis that impeded both sciatic nerves simultaneously. 

Things were so bad at this point, the ER doctors admitted my fiancée and put her in a bed beside me, thinking my journey was coming to an end.  They put me on steroids to reduce the inflammation, and within days I was receiving radiation treatment to my hips and pelvis to try to alleviate the pressure on my nerves.  Amazingly I was up and walking in just days, but it took a month for the full feeling to come back to my legs and groin.

The Staph Infection

Well, you guessed it, I supposedly contracted a staph infection during the week I was in the ER fighting to save my legs.  This was discovered by a blood test, but the location of the infection was never confirmed by either a transesophageal echocardiogram or a full body MRI.  But there was no taking chances, and high dose IV antibiotics started immediately.

The Game Changer

My best guess is that just weeks before the melanoma took my life, I received my 1st combination does of the lifesaving immunotherapy Opdivo (nivolumab) + Yervoy (ipilimumab).  I would be the 1st person that my oncologist knew of who would be treated for a staph infection and be given Opdivo (nivolumab) + Yervoy (ipilimumab) simultaneously.  The 1st couple weeks were a struggle and I felt like I was literally fighting for my life.  My body could not regulate its own temperature, which fluctuated between 36.2°C and 38.8°C, and the cancer was eating a hole through my sternum which hurt so much I couldn’t sit up without being in excruciating pain.  I was covered from head to toe with the itchiest rash I have ever experienced.  I was very thankful to have my brother and father by my side to wake me up every 4 hours to take pain meds and Tylenol, cool me down with cold compresses when I was too hot, and yes, to empty my home made urinal because there was no way I was making it to the bathroom.

The Recovery

The cancer was pretty much stopped in its tracks and the side effects became more manageable over the next few months. By June, the experience took its toll on my poor fiancée and she vanished permanently to be with her dad who was also dying of prostate cancer at the same time.  I struggled physically and emotionally,  trying to define my new normal.  I changed my diet, started juicing, slowly reintroduced physical exercise, went to several types of therapy, read spiritual and self-help books, and started yoga and meditation.  By December 2018, I was able to lace up my running shoes again. 

The results of my latest PET/CT scan conducted February 2019 shows a favorable partial metabolic response with many lesions largely resolved, and the few remaining are shrinking and show only mild uptake compared to previous scans.

 

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Tanya’s Story

St. Albert, AB

In June 2016 I went to get a mole on right shoulder checked, as it had been rubbing on my sports bra and was becoming irritating. I was a newly certified fitness instructor, and I was on top of the world.
The same day that I went to get my stitches from the mole surgery removed, my doctor had the results: the mole was malignant melanoma. The next month, I had my first meeting with Dr Salopek, a melanoma specialist. He recommended a wide excision and a sentinel lymph node biopsy, which I received in August 2016, however, only tissue was actually obtained in the biopsy, and no lymph nodes were actually taken. The results came back undetermined.
In March 2017, I had an ultrasound, followed by a biopsy three days later. After these tests, it was determined that my melanoma was stage III. At this point, I needed a radical lymph node dissection. I took 25 days off from teaching fitness, and went back to the gym as soon as my drains were removed. The test proved that 3 of my lymph nodes were metastatic, however that was only 3/30 so 97% came back clean!
This diagnosis meant that I would need to begin treatment in the form of a clinical trial with Dr. Symlie. In December 2017, I was taken off this trial after it was deemed ineffective for me. I then had one treatment of Nivolumab, however my scans following that treatment revealed that the nodules in my lungs had started to grow, moving my melanoma into stage IV. I then had a lung biopsy. Two weeks later, I began Keytruda, and continued to take classes and teach fitness while I was on the trial. Shortly into beginning treatment, my doctors also discovered that the treatment had destroyed my endocrine system, and I would need ongoing medication for it.
Around this time, the meningioma that had been in my brain started to change and cause swelling. I lost consciousness during a fitness class on April 25 2018, and had a complete craniotomy on May 5. The surgery took place the day before my son’s ninth birthday, so I was even more determined to pull through. The craniotomy revealed that there was a hemangioblastoma growing at the bottom of my brain stem, and a cyst growing around it. As much as I wanted to go back to the gym two days later, I stayed in Glenrose Rehabilitation for five weeks to relearn how to use my right side, a side effect of my brain injury. And then I drove home!
Now, it’s September 2018, and I am still fighting. Sometimes I want to scream, sometimes I want to cry, sometimes I want to give up, but I am getting stronger every day and have faith that my scans are going to come back clear. If I can go through this year of hell and still find the positives in life, I think anyone can— whether it’s getting a good parking spot at the hospital, warm blankets, or friendly nurses. Some days its horrible, but the only way to not get sucked into the viciousness of this disease is to dry our tears and rise above it.

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Barbara’s Story

Toronto, ON

In February 1981, a Clark’s level II-III malignant melanoma was discovered on my right knee, which was excised widely. In August 1985, I noticed a small nodule just above the primary site. It was excised and was positive for malignant melanoma. In July 1986, a second recurrence in the same area was excised and was once again positive for melanoma. In November 1986, I developed a right groin node. It was excised and again proven recurrent disease. In that December, I had a CAT scan which showed internal and external iliac node involvement bilaterally and a right pelvic side wall mass. I started chemotherapy (DTIC combined with Tamoxifen) in February 1987 in Toronto, which ended on November 11, 1991. Yes: I was in treatment for almost five years. I started with Dr. Michael Baker at Toronto General Hospital and eventually we moved to Princess Margaret Hospital. To this day, I see Dr. Baker annually. Twenty six years after finishing chemotherapy, to what do I accredit my survival? So many things. When I was told that I had a 20% chance of survival just before starting chemotherapy, I told my oncologist that I would prove him wrong. I got involved in every aspect of my treatment and care, questioning everybody and everything. By doing so, I gained the respect of my oncologist and chemotherapy team. Now, I am thinking positively and setting goals.

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Lyall’s Story

Lantzville, B.C.

In August 2015, I was diagnosed with stage 3B melanoma, which had manifested in my chest bone. I had two surgeries to remove the tumour along with eighteen lymph nodes, followed by twenty consecutive weekdays of Interferon. Yet, by January 2016 the melanoma had spread to my liver and had progressed to stage 4. I started an Opdivo + Yervoy immunotherapy clinical trial, which finished in May 2017. I had four instalments of each treatment, though I had to miss one because my liver and thyroid levels were elevated, which was treated with a synthetic corticosteroid. The treatments were ultimately a success, and I am in remission.

I truly feel that I am one of the most fortunate people in the world. I have been able to go back to work, and I have the support of my incredible wife Debbie, my sons Nick and Kris, my extended family, and my friends. It has been so important to me to acknowledge and thank all my caregivers for their continued support. I know that this journey is ‘our’ journey. They are experiencing the same fears and emotions that I am going through.

I also believe that if you’re fighting cancer, every person should share their story how they see fit. I went public for two reasons; I hoped that by sharing my story I could give others who are in a similar situation hope, and I want to help people recognize that our caregivers are our rocks, who are living the same rollercoaster of a journey as the cancer patient, and they also need support. Simply asking them how they are doing will go a long way in helping them during these difficult times.

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Dora’s Story


Cando, Saskatchewan

I was born with a black mole on my right heel that started to change and was diagnosed as cancerous, so I had surgery in 2002 to have it removed. In 2008 it came back and was removed again. Then in 2013 it came back in my lymph nodes; I had 14 removed, but in 2016 it came back with tumours inside and outside.

On Jan 14th, 2016 a CT scan showed that my cancer had returned in my groin area, and potentially in my lung and kidneys.

The Doctor told me that there was nothing they could do for me, and I likely I didn’t have much time left. Then Dr. Abbas approached me, to see if I was interested in trying this new drug. I accepted, and I turned out to be a candidate for NIVOLUMAB-100. I was happy, as maybe there would be hope for a few more years; however, the program was 1-2 years long, and have to drive 2 1/2 hours to Saskatoon every two weeks.

My original CT scan showed a lymph tumour that was 4.7CM by 4.3cm; my last CT scan showed the tumour at 9mmx7mm. All my other tumours have gone, including the eighteen tumours on the outside of my stomach, which began to disappear in the first two weeks of my treatment. The spots on my lung, my bones, and my kidneys are all gone, and my blood work has always been good.

I have had no side effects except some fatigue and weight loss, I have never been sick nor did I lose any hair- though my hair has darkened and curled for the first time in my life.

Dr Abbas’ nurse Megan has been a lifeline for me. She is open to questions, finds the answers, and is just an awesome person. She makes you feel important, and Dr. Abbas has been very good to me in answering questions and giving me advice.

This drug is definitely a Godsend, as I am here to tell you about it.

I hope to have quite a few more years to live and enjoy my life, my family, and my friends. I want to say a heartfelt thank you to everyone involved in my health care, and especially this wonder drug called NIVOLUMAB-100.

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Lana’s Story


Prince Albert, Saskatchewan

In the Summer of 2013, I nicked a mole on my right calf while shaving; It bled a bit, but I didn’t think anything of it. I have always been covered head to toe in freckles and moles, and I had suntanned when I was younger, so I agreed to get a skin examination. The Doctor I went to decided it would be best to apply liquid nitrogen and burn the mole off. This procedure resulted in a keloid, which would eventually be diagnosed as melanoma in January, 2014. Two weeks later, the mole and surrounding lymph nodes were removed, revealing that the cancer had spread to my lymph nodes. I began taking interferon and radiation treatments. Aside from some side effects, I responded positively to the interferon; however, the radiation prevented my surgery wound from healing. After three extremely painful debridements, a vacuum was placed over my wound for ten months to help it heal.

After my interferon treatments ended my wound healed quickly, and I was optimistic. However, my six month checkup revealed that the melanoma had returned and metastasized to my lungs. I began receiving the drug Nivolumab, which I was scheduled to take for two years. In the following months, more tests would reveal that the cancer had metastasized to my breasts, skin, and my brain. I had begun taking the combination trial of Ipilimumab and Nivolumab in four cycles every three weeks, which demonstrated positive effects on my lung and brain lesions. Since October 19th, 2016, I have been on maintenance treatment of Nivolumab every two weeks, and my most recent CT scan in April showed a complete response!

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