I discovered something on top of my head in the summer of 2012; I thought it was an insect bite. It got larger over the next few months, and then began to bleed. I saw a dermatologist who, after telling me it was nothing to worry about, later called to say it was a less common form of melanoma (nodular – amelanotic) and that it was quite advanced at stage 4.
The tumour on my scalp was deep, and two surgeries were needed to remove the primary tumor. A few months later, an MRI showed four fast growing tumours in my brain. I quickly received whole brain radiation, and not knowing what to do, my wife and I reached out to Kathy at Save Your Skin Foundation. On her advice, we got an oncologist and subsequently a referral to see Dr. Smylie in Edmonton. After a number of procedural bumps and roadblocks, in August 2013, we traveled to Winnipeg to received gamma knife radiosurgery on the four brain tumors.
For the next three years everything looked good. Regular scans showed no further growth of the four tumors, and yearly PET scans revealed no progression into any other areas of my body. But then, 3.5 years after my gamma knife radiosurgery, the brain tumors started looking larger again. To treat this, I went for a second round of gamma knife in Winnipeg, and a week after returning from Winnipeg I began a 2 year protocol of Keytruda immunotherapy with doses every 3 weeks.
Everything went well during the first year of the immunotherapy. I had no undesirable symptoms from the drug, and the regular MRI scans even showed some modest reduction in the size of the tumors. In March of 2018 though, a scan revealed that the largest tumor looked like it was starting to grow again.
We then decided it was time to take a closer look. It seemed that there could be multiple reasons why the MRI might show what looked like further progression, and because this particular tumor was deemed to be easily accessible by surgery, it was decided to take it out. In April 2018 the tumor was successfully removed, and its analysis showed that it was completely dead tissue. YAHOO!
I continued the Keytruda treatment until the completion of the 2 year protocol in March 2019. Since that time, we are continuing to monitor the remaining tumors and I am feeling very well and healthy. I was told by some that my initial prognosis was very poor, but we are now focused on the long-term life plan.
My advice: Be positive, be proactive, get educated, seek out knowledgeable advice, and never give up. There are wonderful things happening with melanoma immunotherapy and treatments, and much is now known and understood about this disease that lets doctors make informed and targeted treatment plans. I’m living proof of that!
Growing up in South Africa, I paid little attention to my skin, often resulting in sunburns; I usually looked like a tomato! I didn’t consider the possible sun damage until 2012, when I developed a mole on my back that itched, but I couldn’t see it. As a physician myself, I never thought about getting sick, so I left the mole for a while. A month after I had discovered it, I spontaneously asked another surgeon to remove the mole for me. When the tests came back as stage 1B melanoma, it was a shock, but I knew I had to come to terms with it. I pushed for a quick surgery, and eleven days after my mole had been removed, I had a wide resection surgery on my back, and the lymph nodes in my left armpit removed. Now I’m in good health, and doing well- but I feel privileged to be alive. Now, I try to take advantage of every second. I’m in the game!
After my experience, I’ve made it a personal project to teach people how to engage with their treatment, and advocate for themselves. By learning how to navigate the healthcare system, you can get the care you deserve, like I did.
Since being diagnosed with melanoma in 2005, I have had ten melanoma related surgeries, three systemic treatments, four separate radiation treatments, countless scans, and numerous blood transfusions and iron infusions.
My initial lesion was on my upper right arm, and considered lower risk as it was “only” 0.72mm deep. In 2010 the disease reached stage 3, appearing in a lymph node in my right armpit. Although the PET scan following the removal of my lymph nodes was clear, the disease progressed to stage 4 in 2011, when I was 6 months pregnant. It was in my brain, my left lung and my liver.
In June 2011, I underwent emergency brain surgery to remove the two large tumours to increase the chances of survival for our unborn daughter and I. The surgery went well for both of us, and both tumours were successfully removed. On August 5th, 2011 Madeline Delaine was delivered via C-Section; ten days later, I began 2 weeks of full-brain radiation. Before starting my radiation treatments, a CT discovered additional tumours, one in the lung and two in the liver, which were treated in the Fall with 4 infusions of the trial drug Ipilumimab.
In September 2012, I had surgery to remove one tumour in my lung, and one in my chest wall. In March 2013, I had surgery to remove a tumour on my left flank and in December of the same year, I had a tumour removed from my right breast. In April 2014, I had bowel surgery to remove 4ft of my small bowel and started up treatment with Pembrolizumab, through Health Canada’s Expanded Access Program. Shortly after my 14th infusion of Pembro at the beginning of 2015, I had another bowel surgery to remove a small amount of disease that was still in my small bowel.
I had a 10th surgery in July 2018 to remove a tumour that was close to my kidney. I continued with my treatment with Pembroluzimab for another year and had my 83rd and final infusion on July 31st, 2019. As of today, approaching fall of 2022, I continue to be tumour free!
En 2013, suite à l’apparition d’une petite bosse au niveau du cou, j’ai subi une échographie qui a démontré qu’il s’agissait d’un ganglion. Après la chirurgie, le verdict est tombé : Mélanome métastasique de source inconnue. Deux mois plus tard, j’ai subi une dissection de l’aisselle gauche avec retrait de 43 ganglions dont 7 malins. Les examens de suivi n’ont démontré aucune autre trace de cancer, mais le risque de récidive était très important.
J’ai donc été mis sous Ipilimumab par dose de 10mg. Quatre traitements étaient initialement prévus dans la première phase. Le premier n’a pas causé trop d’effet secondaire, mais lors du deuxième (début 2014) j’ai fait une hépatite du foie et subi deux hospitalisations. Les traitements ont du être arrêtés puis l’hépatite traitée. La médication m’a causé une pneumonie médicamenteuse, qui a nécessité une troisième hospitalisation. Depuis juillet 2014, j’ai arrêté tout traitement.
À titre préventif, j’ai des examens de suivi tous les 3 mois pour les 2 prochaines années. Les derniers examens ne démontrent aucun signe de récidive. J’ai dû cesser toute activité pour une période d’un an (travail, activités physique, etc.), activités qui ont repris graduellement en septembre 2014. Aujourd’hui, tout va bien et je profite, au jour le jour, de la vie qui s’offre à moi.
In 2003, a year after being told that a lump on my left arm was benign, I felt further discomfort and doctors decided the lump should be removed – after originally having a misdiagnosis, it turned out the lump was positive and I was diagnosed with Stage 4 malignant melanoma. In 2005, the cancer had propagated into my left lung, kidney, liver, and adrenal gland.
Having received the only available treatment option in B.C at the time, my prognosis was not good and I was given six months to live. With limited support from the medical community, my family researched options and we were able to find a trial treatment. After completion of the drug protocol, the tumors diminished. But, then in 2007 a 9 cm mass was found in my bowel.
After surgery, I was put on a new clinical trial. After completing the treatment, a PET scan showed a small tumor in my right kidney. Given my medical history, it was decided that the kidney be removed in January of 2009. Since 2009 I have been cancer free. Today, I am a little scarred…a little worn…but ALIVE and living an incredibly healthy, happy life.
En 2006, je fais analyser un grain de beauté sur la cuisse qui a changé d’aspect et qui démange. Je subis une exérèse complète et le pathologiste conclut à un naevus bénin. En 2009, je deviens subitement très malade et lors d’une visite à l’urgence, on découvre une masse à l’intestin grêle et je suis opérée par laparotomie.
Je subis des complications à cause d’une deuxième métastase non détectée. On découvre qu’il s’agit d’un mélanome métastasé provenant du naevus analysé en 2006. Les pronostics de survie étaient très sombres. J’ai toujours voulu combattre cette maladie, j’ai claqué la porte à la résilience dès le début et je me suis remise à l’entrainement pour de petits marathons. Jusqu’au retour du boomerang en 2010. On détecte alors l’apparition de métastases au colon et sur l’aorte abdominale et je dois être opérée à nouveau.
J’adhère enfin au protocole sur Vémurafenib phase 3. Les effets secondaires sont très intenses, toutefois le traitement prouve son efficacité. Seize mois plus tard, les scans montrent une rémission. C’est un énorme soulagement. Je suis encore aujourd’hui ce protocole, on considère qu’il serait encore risqué de le terminer. J’ai le privilège d’avoir fêté mes 40 ans tout récemment. Mon conjoint est resté à mes côtés tout au long de ce parcours cahoteux et nous avons une fille qui a maintenant 7 ans.
Ma parenthèse de vie a débuté par une biopsie d’un nævus à la cuisse gauche en 2005, avec à ce moment présence de cellules atypiques. Une reprise de biopsie début 2006 est revenue négative. En 2010, apparition d’un ganglion à l’aine gauche et 2 semaines plus tard d’un nodule à la cuisse gauche au même endroit que la biopsie de 2005-2006.
J’ai subi en mars 2010 une chirurgie de la masse à la cuisse gauche (mélanome) avec exérèse assez large de la chaîne ganglionnaire à l’aine gauche dont un ganglion était positif. Par la suite de mai 2010 à mai 2011 j’ai reçu un traitement d’immunothérapie (interféron), soit 1 mois intraveineux et 11 mois sous-cutané 3 fois par semaine.
Depuis j’ai des contrôles réguliers avec TEP scan une fois par an, visite aux 6 mois avec le chirurgien et une fois par an avec mon dermatologue Dr. Joël Claveau.
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Mon leitmotiv est: Hier est une histoire, demain est un mystère et aujourd’hui est un cadeau, c’est pour cela qu’on l’appelle “PRÉSENT”.
In 2007, I noticed a discolored mole on the backside of my left shoulder that has been immediately removed by a surgeon. The diagnosis was Melanoma with a depth of 1.5mm. I had surgery the following month.
When I met the surgeon for a follow up, he told me that if melanoma resurfaces within five years it would lodge itself into a vital organ and spread rapidly within the system. “If this happens”, he said, “you will not survive.” Starting at the end of 2010, I felt intense pain in my left arm, and was prescribed some anti-inflammatories.
A few months later I felt even worse, I could not even sleep and had to take sick leave from work. After a CT scan I was diagnosed with cancer in the lungs, the liver and possibly the bones. Then a bone scan and a biopsy showed Stage 4 Melanoma. I wanted to access a trial for new medications but I had to do at least 4 chemotherapy treatments before applying. So, in other words, I didn’t have any options. After 1 year of treatment I was in complete remission, when I had very few chances of survival. Then, in 2013, I was diagnosed with 3 brain tumors. I had a brain surgery followed by a Gamma Knife treatment. In 2014 I started Dabrafinib. I am now happy to say I am cancer free.
In June of 2010 I was diagnosed with an ocular melanoma tumor at the back of my right eye. In July of that same year I had brachytherapy. In March 2012, metastases were confirmed in my abdomen and I proceeded to have four infusions of Yervoy (ipilimumab) in the late fall of 2012 and then again in the late fall of 2013.
I also had two radiation treatments to the abdomen in March and April of 2012 and one radiation treatment to the spine in September 2013. I’m alive today. I am here. I can enjoy life.
In 2006, I noticed a mole on my thigh. Back then, I knew nothing of skin cancer. It wasn’t even a consideration. This was just a mole that hadn’t been there before. I went several times to my doctor about it but his answer was always the same, “It’s just a mole, don’t worry about it”. I started to worry at the end of that year when the mole started to bleed while I sat and watched TV. I made an appointment with the doctor again but had to wait a couple weeks to get in. By the time I got in, the bleeding had stopped. When the Dr. looked at it, I heard the same words, “It’s just a mole”. This time however, I held my ground and told them I wanted it removed, no more talk. Two weeks after that I went back to get my stitches out. When the doctor came in I said I was there for my stitches removed and she said, “We have a problem”. It was then that I got my diagnosis that the mole was malignant melanoma.
My 2007 diagnosis led to 3 unsuccessful surgery attempts before I was sent to a larger center for a sentinel node biopsy. Fear abounded as I tried to find out about this condition. No one seemed to know anything about this malignant melanoma. All I got from Drs. and people that I asked was that this was cancer and not a good cancer to have.
After my diagnosis and surgeries, life started to settle back down. I was referred to a cancer doctor that would see me for a checkup every three months. If nothing changed, then after 2 years I would only have to see him every 6 months and if nothing reappeared within 5 years, I would be cancer free.
In May 2009, I had a recurrence as the cancer came back as a tumor in my groin. After the surgery to remove it, I got to see the doctor that was following me. As I sat across the desk from him, he opened my folder, read something, and then he closed the folder and said: “There is nothing I can do anymore, go home and get your affairs in order as there is no chance for survival now that the disease had gone metastatic”.
Needless to say, my family and I were stunned. I felt fine but the doctors were telling me that I was in the last year of my life. I searched everywhere to find out more information on this cancer. Everything I read was all about how not to get it, not what to do if you had it.
My sister sent me a news article about this lady that had started a melanoma foundation so I reached out and contacted Kathy Barnard. She had just gone through a similar whirlwind in her life and was still living and ready to tell her story. She suggested that I get a second opinion with a doctor in another province that she had seen. Then, she went and made arrangements for me to get in to see him.
My wife and I traveled the 900kms to the Cross Cancer Institute. Sitting with Dr. Smylie, he agreed that I was in trouble but then he said the magic words: “I can keep you alive”. That was all I needed to hear and at that point, I enrolled in a clinical trial. In October 2009, I entered into my first clinical study.
Unfortunately I had yet another recurrence in December 2010. They found an 8cm tumor in my lungs. A major surgery in the hospital in Alberta confirmed that the tumor was unresolvable but it did allow the clinical study team to get a biopsy of the tumor. I was closed back up and sent home. At this time I was starting to not be able to breath on my own. I was considered palliative and placed in hospice.
During my final hours, while I lay in the hospice bed breathing straight oxygen, my wife and Dr. Smylie were working feverously to come up with a plan.
Dr. Smylie announced to my family that he had found a new trial that had great promises of working on my tumor to eradicate it but he needed me back in Edmonton. My wife called everywhere and everyone she could, to try and get me across the mountains to Edmonton, but there was no medical transportation that would take me in my condition. With the help of local people in our town, I found myself being picked up out of my bed and placed in the back seat of our truck. My wife jumped in the driver’s seat and raced out into the night to take me to the cancer clinic in Alberta.
I don’t remember much of that trip. But I do vaguely remember sitting on the Drs. examination table and the Dr. saying that I was to receive the strongest version of the new drug. We finished the exam and then headed to the clinical pharmacy where we received 3 weeks of this new drug to take home with us.
Back at home, the oxygen machine had made its way there and I was laid in my own bed. Now, twice a day, I was taking a pill that would hopefully make a difference.
Two weeks later, I removed the oxygen mask and was able to breath on my own. Then it was time for my first checkup in Alberta but this time, rather than sleeping the whole way, I got to sit in the passenger seat. The Dr. was very surprised to see my new condition. They did a CT scan and were quick to show me how much the tumor had shrunk. It appeared that we were on the right track.
That was at the end of April 2011 and today I am still free of the cancer that so badly wanted to take my life. This drug was the very first version of a treatment that has come full circle and is now the approved drug for Melanoma. I was in the very first group of patients to ever receive this drug. There were a lot of really bad side effects from the drug but I stuck with it with the reason being that back then, the only real piece of info we had was that if treatment stopped, the melanoma would come back as it did for so many others in this trial. Without any other options, and not wanting to have to look at death again, I stayed with it until 2 and a half years later when a new trial was presented that I could go on should the melanoma come back.
North Vancouver, B.C.
White Rock, B.C.
Abbotsford, B.C.
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Québec City, QC
Trois-Rivières, QC
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Prince George, B.C.