MELANOMA PATIENT CONNECTION - Celebrating 10 Years of Awareness, Prevention, Support, and Advocacy - Melanoma Network of Canada
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MELANOMA
PATIENT CONNECTION
Celebrating 10
Years of Awareness,
Prevention, Support,
and Advocacy
WELLNESS SUN SAFE PATIENT SPOTLIGHT THERAPUTIC
Dealing With the Anxiety CLOTHING Keira Brodie. Running through UPDATES
of a Melanoma Diagnosis treatment to give strength and
and Fear of Recurrence TRENDS hope to anyone who has been
affected by melanoma.
Spring 2019 | Melanoma Network Of Canada
MESSAGE FROM THE CHAIR
Melanoma Network of Canada – 10th Anniversary
a few incredible people – would May. Watch out for our ‘You Missed a
likely not be with us without the Spot’ campaign, focused on improving
advancements in treatment that awareness of damage caused by UV
have been made. Yet we know we radiation. Activations are planned
have a long way to go before we for Toronto and Montreal. Visit our
have treatments that work for all, website for more information.
including the numerous rarer forms of
melanoma. With our success in leading the
charge for a ban on youth access to
RELIABLE tanning beds and the implementation
of the Skin Cancer Prevention Act in
INFORMATION 2013, MNC has led the country with
At MNC, our goal from the start has coordinated skin cancer prevention
always been to provide timely, accurate awareness and actions. In 2014, our
and understandable information Canadian Dermatology Educational
and support for patients, families Award for Sun Safety Prevention
and health care professionals across winning program was launched in
Canada. We now provide the most in- Ontario with help from the Douglas
depth and accurate resource materials Wright Foundation, providing free
in the country – something that did sun safety information and program
not exist a mere 10 years ago! Our for summer camps, that has since
ANNETTE CYR patient support is second to none, with won a, was resources to hundreds
Three-time melanoma survivor, of camps and summer programs for
individual one-on-one navigation and
Chair & Founder, Melanoma youth. In the five years since inception,
support, peer support, support groups,
Network of Canada nearly half a million children, youth,
cross-country information sessions,
and counselling services soon to be camp counsellors and staff have
Ten Years. It is hard to believe a decade added. been educated on sun safety and the
has gone by since the Melanoma need for protection outdoors. We
Network of Canada was founded –
right in my home office with a couple TIMELY have provided corporate wellness
prevention events and countless
of other dedicated souls who wanted TREATMENT presentations on prevention for high
to put melanoma on the radar. At the We also have worked diligently and schools.
time of my diagnosis in 2001, there effectively to improve access to drug
was little information available in therapies for patients and physicians, We are proud of all that has been
Canada, certainly little no support working with government and industry accomplished and could not have done
services, and very little hope for across the country. We have worked on it without the generous support of
effective treatment should the disease each drug approval since our inception our patient community and for those
spread. and are looking forward to improved who have so generously volunteered
clinical trials and therapy access. their time. Having representation as
The past 10 years have been filled a patient community matters. Having
with many milestones of achievement MNC is regarded as one of the top
leaders in patient advocacy, working a voice matters. Melanoma matters.
and progress in harnessing this Make a difference and volunteer with
disease. When immunotherapies were collaboratively with government and
industry to improve treatment options us or donate. Help us to change the
introduced in 2012, a mere seven years tide on this cancer.
ago, melanoma patients were the first and access for patients.
to participate in their successful clinical
trials. Today immunotherapies are used PREVENTION
across cancer types, but the efficacy of We take it seriously. Up to 80 to
these breakthrough treatments were 90 percent of melanomas can be
attributed to exposure to ultraviolet Chair & Founder,
first demonstrated in melanoma. Melanoma Network of Canada
(UV) radiation from the sun.1 In 2018,
We finally had access to a few we launched the Sun Safety Council to
treatments that worked incredibly bring together stakeholders interested
well for a good number of metastatic in amplifying the need to improve our
patients. Stan, Don, Peter, Mark, sun-safe behaviours and knowledge.
Caroline, Sue, Colleen – just to name We have two great events planned for
1Parkin DM, Mesher D, Sasieni P. Cancers attributable to solar (ultraviolet) radiation exposure in the UK in 2010. Br J Cancer 2011; 105:S66-S69.
Stay Sun Safe and on Trend
At this time of year, we get asked Protective clothing and broad-brimmed The name rash guard reflects the fact
all sorts of questions about sun hats with a UPF rating are one of the that the shirt protects the wearer
protection. This is unsurprising, most important steps when it comes to against rashes caused by abrasion, or
given that melanoma rates doubled safe sun practices. Great fashionable by sunburn from extended exposure
between 1982 and 2011 and about 90 hats are everywhere these days – try to the sun. When you wear your
percent of melanoma skin cancers are Tilley, Wallaroo, or Columbia to name rashguard and you are active, playing
associated with exposure to ultraviolet a few. A 3-inch (7.62 cm) brimmed hat volleyball, surfing, or splashing in the
(UV) radiation from the sun.1 protects not only the face and top of waves, you’ll appreciate the extra
the head, but also the neck, shoulders, coverage. But remember – you still
The first line of defense against UV and ears. A baseball hat doesn’t need sunscreen on all unprotected skin
radiation is actually your clothing. You protect enough. – don’t forget your face, neck and ears,
may already know that SPF stands for and even the tops of your feet. Again,
sun protection factor and measures For anyone who enjoys outdoor there are many good and fashionable
how long your sunscreen will protect gardening or sports like golfing, items available from UV Skinz, Coolibar,
you from UV rays. You may not be running, or biking, the newest trend Lands’ End, Patagonia, and more –
as familiar with the term UPF, which is UV sleeves, also called solar or sun you are bound to find something that
stands for ultraviolet protection factor. sleeves. These sleeves allow you to works.
UPF indicates how much of the sun’s wear a short sleeve shirt to increase air
UV rays are absorbed by the fabric circulation, while keeping your arms In other words, we have no excuse –
instead of your skin. For example, if protected from UV radiation. Many UPF clothing literally has your back.
a piece of clothing is rated UPF 50, pro golfers are now wearing these The fact that we care about our skin
it only allows 1/50th of the sun’s as part of their daily wear. They are and want to protect it is already pretty
UV radiation to pass through it. This comfortable, easy to take off, and a few cool. But look for items that offer
means that this fabric will reduce your types have cooling fabric. Columbia, added features like mesh ventilation
skin’s UV radiation exposure by 50 Coolibar, Nike, and many others are and quick-drying fabrics to keep you
times (98% UV block) in areas where available. cooler. Enjoy your summer safely.
the skin is protected by the fabric.2 The
UPF clothing numbers range from 15 Neck gaiters anyone? These are tubes Check out Columbia’s UV protective
to 50+. that are generally moisture wicking, clothing here: https://www.columbia.
breathable and seamless UPF neck com/uv-protective-clothing/.
And unfortunately, a regular T-shirt tubes that provide the ultimate UPF
won’t really do much for you. In fact, protection for the face and neck. 1
Centers for Disease Control and Prevention. Rates
it is estimated that a T-shirt only has These are a must for extended outdoor of new melanomas – deadly skin cancers – have
doubled over last three decades [Internet].
an SPF rating of around 7, and if it gets activities, like fishing or biking, that 2015 June 2 [cited 2019 Apr 11]. Available from:
wet its rating drops even further.3 That expose the neck and face for long https://www.cdc.gov/media/releases/2015/
is why one of the best ways to protect periods where sunscreen may not be p0602-melanoma-cancer.html
your skin is to look for UPF-rated as effective.
clothing, or to use clothing with a tight 2
SunGrubbies. SPF vs. UPF - What is the difference?
weave. While technically all clothing Gloves aren’t just for winter anymore. [Internet]. 2018 Feb 10 [cited 2019 Apr 12]. Avail-
can be considered sun-protective if able from: https://www.sungrubbies.com/blogs/
Yes friends, there are fingerless and full
news-articles/90201091-spf-vs-upf-what-is-the-dif-
it covers your skin, sun protection gloves to also protect your hands from ference
clothing is designed to provide more UV damage. Unsightly brown spots
protection. as well as skin cancers of all varieties 3
Skin Cancer Foundation. Get in on the Trend [Inter-
occur on our hands. Why not cover net]. 2014 Jan 24 [updated 2016 May 14; cited 2019
UPF clothing, sunscreen (SPF 50+, your hands on a long day of golfing, Apr 12]. Available from: https://www.skincancer.
broad spectrum), hats, sunglasses biking or gardening and look like a pro? org/prevention/sun-protection/clothing/get-in-on-
the-trend
and shade are all essential. But for
your next under-the-sun activity, When the water is calling your name,
here are five pieces of UPF clothing try a rashguard, which is the traditional
and accessories to keep you extra athletic shirt made of spandex and
protected. nylon or polyester that surfers wear.
PATIENT SPOTLIGHT
My name is Keira Brodie, I am currently There were so many things thrown diagnosis where they found a travelling
finishing my fourth year at Western at me at once, including hearing lymph node on my left side that was
University. In October 2018, I was medical terms I had never even heard also cancerous. My incredible surgeon
diagnosed with malignant melanoma. before. But waiting without further managed to remove this as well. I was
Before the diagnosis, I was planning answers was the hardest part of this referred to the London Cancer Centre,
on running my first full marathon in journey; my surgery was scheduled for and since I am BRAF-positive, I was
Vancouver in May 2019. I have always November 21. My surgeon was great eligible for a year-long clinical trial that
loved to run – it’s a great way to be and my parents made the trip out to would involve taking dabrafenib and
alone with your thoughts, listen to your support me during my surgery, which trametinib daily. I started the trial in
new favourite song repeatedly, and I was so incredibly thankful for. I also January and am incredibly grateful to be
to justify that second bowl of pasta! had support from the best friends a partaking in this clinical trial, as well as
I had always wanted to try running a girl could ask for, all the way from the for all the medical staff I’ve encountered
marathon, so when my parents moved east coast to right here in Ontario. The on this journey.
to British Columbia from Burlington, recovery from surgery was tough, but
Ontario in the summer of 2018, I after a few days I was back to attending Throughout everything I still looked to
thought there was no better time to do all my classes. running as an outlet, and I remained
it than in a new city. determined to try and run the
On December 13, I found out the cancer marathon. I wanted to prove to myself
That same summer, I noticed a strange- had spread to two lymph nodes on that I could still do it, but I now had
looking mole on my back. Initially, I my right side and that I had stage 3 an even bigger reason to run: I could
didn’t think much of it, but after a few melanoma. I felt as though my entire run to raise awareness for melanoma.
concerned comments from my parents life was going to change. But I was Before my diagnosis I knew very little
and friends, I decided to have it looked determined that it wouldn’t change for about melanoma and since I cannot
at. I had the mole removed at the end the worse. I had an incredible support sit still for very long, sun tanning was
of September and was told it was most system and was lucky enough to be not exactly something I enjoyed. This
likely a wart. This was great to hear, so given the greatest parents and family diagnosis took me by absolute surprise,
I didn’t give it a second thought. Then anyone could ask for. I was also blessed as I am sure it does many others. If I
in the middle of October I was told to have a best friend who has come to could just open people’s eyes to the
to come back into the doctor’s office every appointment with me, as well as dangers of sun exposure or how to take
and was informed that I had malignant the occasional Wendy’s stops afterwards preventative measures, that would be
melanoma. I was told I would need – because sometimes you write your an accomplishment.
to undergo a wide local excision and own prescriptions with a side of fries.
sentinel lymph node biopsy surgery to When I asked my oncologist if I would
find out if the cancer had spread. I had a follow up PET scan after my still be able to run the marathon this
PATIENT SPOTLIGHT
Continued from page 4
May, he said we would have to see how I want to run this marathon not spread this message and supporting me
I was feeling after the first month of just for myself, but for my parents, with this.
treatment. Throughout the good and family, friends, and everyone who has
bad days, as well as the side effects I supported me and given me strength. I If you want to support Keira in raising
have experienced over the first three also want to run it for anyone who has awareness for MNC as she runs the
months of treatment, I still can’t help been affected by melanoma and want Vancouver Marathon, you can contribute
but feel there is no better time to run to give them strength and hope as well. to her fundraising efforts here: https://
this marathon. I want to thank the Melanoma Network www.crowdrise.com/o/en/campaign/
of Canada for giving me the backing to melanoma-network-of-canada.
Please join us on
Sunday, September 22,
for our 8th annual Strides
for Melanoma walk for FOR MELANOMA
awareness.
This 5K walk is the largest annual our family-friendly nationwide event.
fundraising initiative in support of our Witness how communities come
mission: to support individuals whose together to support one another, all
lives have been changed by melanoma while raising much-needed funds and
through prevention efforts, sun safety awareness to save lives.
awareness, patient advocacy and
research. Each year across Canada, I hope to see you there!
hundreds of people gather in one of
18 cities to walk together in the fight Sincerely,
against melanoma – one of the most Alexa Cain
commonly diagnosed cancers in Canada
amongst young adults aged 15-29.1
Through generous donations,
Strides has raised over $1.5 million Executive Director
Your Stride
and continues to grow to support Can Change a Life
awareness, education and patient https://melanomanetwork.akaraisin.
support. Together, we can make a com/ui/Strides/pledge/registration/start Sunday, September 22nd, 2019
difference and reduce our risk of 18 Locations Across Canada
melanoma by practicing sun-safe If you would like volunteer and lead the
behaviours and following a healthy charge for a walk in your community, or SPECIAL OFFER
lifestyle. help out at the event, please reach out
Use promo code
to Eve Dufour, Patent Education & Event
We need your help to reach our Coordinator at and register for only $20.
fundraising goal this year of $370,000. edufour@melanomanetwork.ca
Make Strides for Melanoma and join or 1-877-560-8035 ext 105. Register Today
1
Canadian Cancer Society’s Advisory. Committee on Cancer Statistics.
melanomanetwork.ca/strides
Canadian Cancer Statistics 2017. Toronto: Canadian Cancer Society; 2017 [cited 2019 May 17]. 1-877-560-8035 | walk@melanomanetwork.ca
Available from: cancer.ca/Canadian-CancerStatistics-2017-EN.pdf
Dealing With the Anxiety accepting that those feelings will arise.
“Radical acceptance does not mean that
of a Melanoma Diagnosis you like the anxiety or that you agree
with your anxious thoughts or feelings.
and Fear of Recurrence
It does not mean that you give up to
your thoughts or feelings. It just means
that you are observing them; you’re
letting them come and go like waves,
When 51-year-old Joanne Johnston with another woman who had been instead of getting all tangled up in
was diagnosed with stage IIIB nodular diagnosed with melanoma 20 years them,” she said.
melanoma in 2014, she wanted to earlier. Joanne has drawn much
get started on treatment as soon as strength from their friendship and the It has been five years since Joanne
possible. She looked forward to finishing conversations they have had during her initially found the mole on her inner
her 12-month interferon treatment so treatment, and they are still in touch thigh, and things are still a struggle. Her
she could heal and get back to her job with each other today. sarcoidosis and fibromyalgia continue
as a Life Enrichment Aid at a nursing to impact on her daily life: a recent trial
near her home in Oshawa, Ontario. “If it weren’t for my caregivers and my return to work left her exhausted and
new friend that called me with advice, drained. And while she says she doesn’t
But after a difficult course of treatment I don’t know how I would have made it live in fear of a recurrence of her
that included flu-like symptoms, this far,” she says. melanoma, it isn’t far from her mind.
shortness of breath and headaches
every day for the first month, and a Joanne is not alone in feeling stress Managing her anxiety and ongoing
month-long pause in treatment due and anxiety related to her melanoma health issues has meant focusing on
to liver-related side effects, her health diagnosis and treatment. One study eating well, getting lots of rest, staying
concerns didn’t end there. Shortly after from Memorial Sloan Kettering Cancer sun safe, and making sure she gets
her treatment ended, Joanne developed Center estimated that about 30 percent regular CT scans and MRIs. She also
shingles that lasted for months, of patients with melanoma show signs attends a Melanoma Support Group in
which were followed by a diagnosis of of psychological distress, including Oshawa every month – sharing their
treatment-related hypothyroidism. anxiety and depression.1 And these stories, supporting each other, and
feelings don’t simply vanish once sometimes crying together have brought
Then her health care team discovered treatment is finished.2,3 the group members close together.
that the lymph nodes in her chest were
enlarged – she feared the worst: that Fear and anxiety are not only common “It helps relieve some of the stress and
her cancer had returned. In some ways, and natural responses to a cancer anxiety…because no evidence of disease
it was a relief to find that the cause diagnosis, they can also serve a (NED) doesn’t sound as good as cancer
was sarcoidosis. Finally, a few months positive purpose, according to Dr. Rinat free,” she says.
after the sarcoidosis diagnosis, she Nissim, from the Princess Margaret
discovered she had fibromyalgia. Cancer Centre. During Dr. Nissim’s 1
Kasparian NA, McLoone JK, Butow PN. Psychological
presentation at a Toronto Melanoma responses and coping strategies among patients with
malignant melanoma: a systematic review of the
“I just kept thinking, when am I going Patient Information Session in 2017, she literature. Arch Dermatol 2009;145(12): 1415-27.
to start to feel better?” Joanne says. explained that fear can motivate us to
Naturally a positive and upbeat person, take action, such as making healthier 2
Oliveria, SA, Hay JL, Geller AC, et al. Melanoma
she was starting to get discouraged by food choices and taking our medications survivorship: research opportunities. J Cancer Surviv
her ongoing health issues. as instructed. Problems arise only when 2007;1(1): 87-97.
fear and anxiety interfere with our daily
Thankfully, her sisters, along with lives.
3
Oliveria SA, Shuk E, Hay, et al. Melanoma survivors:
her friends, have made sure she was health behaviors, surveillance, psychosocial factors,
and family concerns. Psychooncology 2013;22(1):106-
supported through that difficult time. The answer, said Dr. Nissim, lies not 116.
Early on in her treatment journey, in trying to ignore or resist feelings of
her hospital also put her in touch anxiety, stress, or fear, but rather in
Where Can I For more information, visit:
Find Support?
https://www.melanomanetwork.ca/
melanoma-recurrence/
MNC offers an online patient forum and https://www.melanomanetwork.ca/
in-person support groups where you can how-do-i-get-support/
discuss concerns and exchange insights, as
well as a Patient-to-Patient Support Program, For support information contact:
which can put you in touch with other cancer Mary Zawadzki, Patient Care Specialist
survivors to talk about your experiences and mzawadzki@melanomanetwork.ca
share concerns or anxieties you may have. 1.877.560.8035 x108
THERAPEUTIC UPDATES CALENDAR
JUNE 2
National Cancer Survivors Day
JUNE 5
Oakville, Melanoma Support Group,
6:30 P.M. – 8:00 P.M., Wellspring
Birmingham Gilgan House
Oshawa, Melanoma Support Group,
6:30 P.M. – 8:00 P.M., Hearth Place
Early Access Program Launched is great news. It will be available for Cancer Support Centre
unresectable metastatic melanoma
for Stage III Advanced patients regardless of BRAF status. For Calgary, Melanoma Support Group,
Melanoma Patients the specifications and requirements of 6:15 P.M. – 7:15 P.M., Holy Cross
each province, please visit our website Centre
As of April 2nd, Health Canada approved
for updated information. As always, JUNE 6
pembrolizumab (Keytruda) for use in the
please check with your hospital care
adjuvant setting for fully resected stage Toronto, Melanoma Information
team to determine if this treatment is
III patients. While we are still waiting Session, 5:30 – 8:00 P.M., The
appropriate for you and the specific
for recommendations from pCODR Michener Institute of Education at
access requirements.
and subsequent price negotiations for UHN
provincial listing, this means that if you
have private insurance you may have First in Kind Therapy for JUNE 26
coverage for treatment. As well, the Advanced Cutaneous Squamous Calgary, Melanoma Information
manufacturer of the therapy, Merck, is Cell Carcinoma Patients Session, 5:30 – 8:00 P.M.,
providing an early access program to Best Western Village Park Inn
cover patients in the interim that may not For cutaneous squamous cell carcinoma (Charleswood Room)
have full coverage from private insurance patients (CSCC), there is good news that
or no private coverage at all. This is Health Canada has approved the use of a JUNE 27
incredibly positive news for this group of first in kind treatment for CSCC advanced Edmonton, Melanoma Information
patients that had no effective treatment patients. Cemiplimab (Libtayo) is a Session, 5:30 – 8:00 P.M., Holiday
options beyond surgery, and yet were are new immunotherapy drug known as a Inn Conference Ctr Edmonton South
potentially high risk for recurrence. It has checkpoint inhibitor. It works by blocking (Maple Leaf Ballroom)
the potential to significantly reduce the a protein called PD-1 on certain immune
number of patients that may have had a cells and is for the treatment of patients JULY 3
recurrence of the disease, and will save with metastatic CSCC or locally advanced Oakville, Melanoma Support Group,
lives. We are so pleased to communicate CSCC who are not candidates for curative 6:30 P.M. – 8:00 P.M., Wellspring
this news. surgery or curative radiation. Check with Birmingham Gilgan House
your healthcare team about coverage
Provincial Listing of Nivolumab for this therapy. Provincial formulary Oshawa, Melanoma Support Group,
coverage will be available down the 6:30 P.M. – 8:00 P.M., Hearth Place
(Opdivo) and Ipilimumab road. MNC will be working with patients Cancer Support Centre
(Yervoy) for Metastatic to provide a submission to support the Calgary, Melanoma Support Group,
Melanoma access to this critical therapy. 6:15 P.M. – 7:15 P.M., Holy Cross
Price negotiations for the combination To learn more about CSCC, access Centre
nivolumab plus ipilimumab, used for the the press release here: https:// AUGUST 7
treatment of unresectable or metastatic www.newswire.ca/news-releases/
melanoma have finally concluded and health-canada-issues-notice-of- Oakville, Melanoma Support Group,
provinces are in the process of listing this compliance-with-conditions-noc-c-for- 6:30 P.M. – 8:00 P.M., Wellspring
important therapy. We encourage each libtayotm-cemiplimab-the-first-and-only- Birmingham Gilgan House
province to move quickly to adopt this biologic-for-the-treatment-of-advance- Oshawa, Melanoma Support Group,
regimen, so no patient will be without d-cutaneous-squamous-cell-carcinoma- 6:30 P.M. – 8:00 P.M., Hearth Place
treatment access. cscc--886325131.html Cancer Support Centre
BC and Ontario have been first to list, To learn more about current clinical trials, Calgary, Melanoma Support Group,
which makes treatment available for access the MNC website here: http:// 6:15 P.M. – 7:15 P.M., Holy Cross
those without private coverage, which www.melanomanetwork.ca/clinical-trials/ Centre
ADJUVANT
THERAPY
WEBINAR
Treatment Options for Melanoma
Patients in the Adjuvant Setting
FREE WEBINAR - REGISTER TODAY
www.melanomanetwork.ca/webinar
Adjuvant therapy is additional treatment offered to stage III patients after they have had a complete
surgical resection of their melanoma to lower the risk for recurrence. We are pleased to offer this infor-
mative webinar on the latest information and clinical data related to melanoma treatment in the
adjuvant setting. Presented by leading medical experts.
DISCOVER OUR FREE MELANOMA SUPPORT SERVICES
CALGARY • OAKVILLE • OSHAWA • NIAGARA
TORONTO June 6th, 2019
Held the first Wednesday of every month. Join a CALGARY June 26th, 2019
Melanoma Patient & Caregiver Support Group to EDMONTON June 27th, 2019
meet with others facing similar experiences. Register Online Today
www.melanomanetwork.ca/supportgroups melanomanetwork.ca/patienteducation
Melanoma Network of Canada
Phone: 905-901-5121 | Toll Free: 1-877-560-8035 | Email: info@melanomanetwork.ca | www.melanomanetwork.ca
Charitable Registration # 85491 3050 RR0001
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