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Introducing BMS Study Connect

At a recent meeting in Montreal with the Bristol-Myers Squibb Canada (BMS) team, we found a fantastic new resource they have launched to improve patient communication and access to BMS clinical trials.

Their website, “BMS Study Connect” is a user-friendly platform to allow patients and caregivers to easily search for new, open, upcoming, or past clinical trials for BMS products in any health indication.  It provides background information on diseases treated by their pharmaceuticals, plus has a search bar and links to more information for several diseases including fibrosis, cardiovascular and autoimmune diseases, plus several types of cancer including head & neck cancer, blood, gastrointestinal, genitourinary, and lung cancers as well as melanoma.

BMS has done a lot of research in melanoma over the years and is credited with the creation of ipilimumab (Yervoy) which has greatly contributed to the shift toward an increase in melanoma survivorship.  Currently their ipilimumab-nivolumab combination treatment is in great demand, and they are working on yet other possibilities for the treatment of melanoma.  On BMS Study Connect, patients can search for any open trials involving these treatments or others, and can even answer a few qualifying questions to figure out if they may be eligible to participate in a new trial.

If a patient finds a clinical trial they would like to learn more about, they can print out the details from BMS Study Connect and take it to their medical team to see if and where they may be able to participate. By clicking on the “Pre-Screen Now” button patients can enter their details as applicable and find more information.  Some of the information on BMS Study Connect is sourced from the reputable clinicaltrials.gov website, which adds the ability to connect patients with applicable trials outside of BMS.

BMS Study Connect allows for patients to better understand their clinical trial options and experience, and allows them to communicate with BMS in a way that makes the situation more personal.  BMS genuinely cares about the patient experience in their clinical trials, and is making a great effort to show that through this online presence.

There is also the option for patients to connect with other patients to discuss their trials or topics related to their condition.  By clicking on the word “Community” at the top of the site, users will be re-directed to the secure and free website inspire.com, and invited to join the BMS Clinical Trial Support Community in which they can chat with other patients and share experiences.

At this time the community is overseen by representatives from the United States, but it is open globally, and there is Canadian participation.  It is beneficial to draw from the experiences of others even in the States at this point, as their population of BMS-product-recipients is larger in general, therefore there is more information to be gleaned from fellow trial participants.

We are grateful that BMS has taken this initiative to better support patients, and we applaud their efforts.  BMS Study Connect is a valuable resource and we hope to share this website far and wide, help to increase patient access to clinical trials and help them to understand their options and better navigate the clinical trial process and follow-up.  Check it out here:  BMS Study Connect

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American Society of Clinical Oncology Annual Meeting 2018!

Once again, Save Your Skin attended the American Society of Clinical Oncology (ASCO) annual meeting, which took place from June 1-5 at McCormick Place in Chicago. The meeting brought together physicians and oncologists, pharmaceuticals, and patient advocates from all cancer types. ASCO, as an organization and at the conference, creates a space for advocacy networking and education, including spaces for advocates to meet, presentations, and a panel track devoted to patient and survivor care. You can read more about ASCO’s interest in patient education here, and visit cancer.net for ASCO’s resources for patient education. These patient and survivor care panels, alongside the melanoma and developmental therapeutics offerings, kept us busy throughout the conference.

While we are working on a more extensive ASCO report, we’d like to share some of the highlights from our social media feed and from the ASCO daily news. Stay tuned for more updates, and more detailed descriptions of the panels we attended.

 

https://www.instagram.com/p/Bjh9PdlnmvL/?taken-by=saveyourskinfdn

 

 

 

 

 

More highlights to be posted over social media and report to come soon! Stay tuned!

 

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Introducing Our New Forum on HealthUnlocked

At Save Your Skin Foundation we are always looking for new and innovative ways to increase knowledge and support for Melanoma Patients and Caregivers.

After extensive review we have found an amazing online forum in HealthUnlocked.  HealthUnlocked is a global peer-to-peer support network.  We have joined with HealthUnlocked to create a community called “Melanoma Wellness Canada.” It is a secure platform for patients and caregivers to connect with other Canadians touched by melanoma.  Within HealthUnlocked you also have the ability to connect with other melanoma communities from around the world.

The discussions that happen in the SYSF community are moderated by our staff, but the conversation is open to any HealthUnlocked members who wish to participate.  We will keep you updated on events and news from Save Your Skin Foundation, plus new and alternative resources to help patients cope with life after a melanoma diagnosis – and we have even started a book club to share recommended readings!

You will recognize us by our logo; we look forward to chatting with you more.  You will begin to see information about HealthUnlocked around our website, and you are welcome to contact us anytime with questions or feedback at lyanne@saveyourskin.ca

Melanoma Wellness Canada will be officially launched this Cancer Survivors Day on Sunday, June 3, 2018.

To connect to our conversations on the home page of Melanoma Wellness Canada please click HERE!

We look forward to working with you to develop a great Melanoma resource. Hand in Hand We Fight Melanoma Together.

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Thank you to All who supported our Giving Hope Gala & Auction!

From all of us at Save Your Skin Foundation, a hearty Thank You to our sponsors, partners, supporters, family, friends, and guests who helped to make our Giving Hope Gala & Auction in Toronto on May 10, 2018 a roaring success!

Please feel free to visit our Facebook page to view photos from the evening – click here to view our detailed thanks, and click here to see more photos!

The patients we support appreciate your time, energy, and donations.  We will continue to keep you updated on our work via newsletters and our social media channels – as always, please contact us at info@saveyourskin.ca if you have any questions. 

Thanks again, and see you next year!

 

 

 

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Melanoma Survivorship

“I have mixed emotions on a regular basis. On one hand, I’m so happy and grateful because I found a treatment that is working, but on the other hand I have to live with the fear and anxiety for the rest of my life. It’s always in the back of my mind.”— Danika

While most people understand that being diagnosed with and receiving treatments for cancer is a terrifying ordeal, even if they have not experienced it themselves, many people tend to think that these struggles fade as patients finish their treatments and move into remission. This is not the case; cancer survivors and long-term treatment patients, especially those that have battled melanoma, experience unique challenges. I make this distinction between those who have fought melanoma and those who have fought other cancers because they are a relatively new population: over the past fifteen years, survival melanoma rates have risen considerably due to the advent of biological and immune system repression therapies, or immunotherapies. Whichever medication sees a patient through their treatment process, the end of their battle with cancer does not coincide with the end of their treatment. Depending on their comfort level and the kind of cancer diagnosis, patients undergo check-in tests once every six months, or yearly, for the rest of their lives. Their cancer, and the potential of its return, is a constant shadow.

“I remember not being able to physically climb stairs, but today, after treatment, things are getting better and easier to navigate. I can’t always see what is around the corner, down below or what will be there when I reach the top, but I still take the steps to get there. One step at a time, one day at a time. I feel like every day since my diagnosis four years ago, I still consciously, every day, make the decision to take ‘the steps to get there.’”—Natalie

While life ostensibly begins to return to normal once treatments are finished, this is simply not the case. Reconciling returning to work, if this is even possible, and resuming ‘normal’ relationships with friends and family is difficult when patients have a stretch of time in their memory that is indescribable to those who have not experienced something similar. The anxiety surrounding the return to regularity is exacerbated by these intermittent appointments, which interrupt the progress of rebuilding a ‘normal’ life. As a diagnosis of cancer increases the likelihood that it will return, the fear of recurrence is present in the anticipation of every appointment, and everything else. Life is forever changed.

“Sometimes no matter how tough the journey, there were beautiful days. No cars on the road, and a clear sky. This is how I felt later on in my journey. I started seeing that there is hope.”—Mike

While a cancer diagnosis is never desirable, some good may come out of these experiences. On May 10th, in the midst of Melanoma Awareness Month, Save Your Skin hosted the Giving Hope Gala & Auction. While the evening was a wonderful success, the one of the highlights was Mike, quoted above, colluding with Natalie, also above, to surprise Kathleen Barnard, Founder of Save Your Skin, at the event. The three are close friends, two are colleagues, and all three are melanoma survivors. They met through their diagnoses. They support each other, and create a space where they can talk about their experiences with others who understand. Further, they act as a voice of hope for current melanoma patients. Through our I’m Living Proof initiative, and other programs like it, melanoma survivors are given the opportunity to connect with patients in any stage of their melanoma journey. They are able to mutually support, advise, and give hope to each other. While melanoma survivors may never return to their life exactly as it was before, part of their new lives, hopefully, can be the mutual support of each other and support of patients currently battling melanoma. This Melanoma Awareness Month, we would like to remind you that the melanoma journey doesn’t end for survivors, and that their life after treatment is often vastly different than it was before. They are a valuable population in the melanoma community, and one that is worthy of our continued support.

 

Mike, Kathleen, and Natalie; Save Your Skin Giving Hope Gala & Auction, 10 May 2018.

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Surviving Melanoma – Our New Video

Click here to watch our new patient-led awareness video:  Surviving Melanoma

Launched last week at our Giving Hope Gala in Toronto, this video portrays several melanoma survivor stories and their experiences within the community of support at Save Your Skin Foundation.

This film would not have been possible without the generous participation of a handful of melanoma patients and survivors, and for that we cannot thank them enough.

Click here to view on YouTube

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Canada Has A Skin Cancer Problem

This week marks the beginning of our support of the Euro Melanoma campaign: The World Has A Skin Cancer Problem.

While meeting with the Global Coalition for Melanoma Patient Advocacy last year in Australia in conjunction with the World Congress on Melanoma, we learned that the group in Europe (Euro Melanoma) who created this eye-catching campaign were inviting members of the Global Coalition to participate from their home countries.

This campaign will be a platform to explore and highlight the human and financial cost of skin cancer from a macro perspective – around the globe.  Through this conversation they will ask some important questions, about true incidence and mortality rates for all skin cancers, patient care pathways, and what is being done to address primary, secondary and tertiary prevention.  This campaign will highlight the scale of the skin cancer problem and position it as a national epidemic – together, we will awaken ‘the sleeping giant.’

Save Your Skin Foundation is proud to support and share this campaign to increase awareness of melanoma and non-melanoma skin cancers.  We thank Euro Melanoma for their hard work and collaboration, and we appreciate the sponsors and partners of the project.  Watch our social media channels for more on this initiative, and as always, feel free to contact us if you would like more information! info@saveyourskin.ca

About the Global Coalition for Melanoma Patient Advocacy: Click here to go to their introductory web page.  Save Your Skin is proud to be working with US-based Melanoma Research Foundation and the many other groups in the Coalition.  More on this is developing as we work together from our locations around the world to improve the lives of melanoma patients and their families.  Stay tuned!

 

 

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Don’t Forget: Prevention and Detection!

May is melanoma month, and it’s starting to warm up out there! Take a moment to remind yourself of some skin cancer prevention and detection tips before you head outside to enjoy the weather.

While you may think that skin cancer isn’t a frequently occurring disease, or that you aren’t at risk if you don’t live in a tropical country, that is unfortunately not the case. It is estimated that in 2017, 7, 200 Canadians will be diagnosed with melanoma skin cancer and 74, 000 cases of non-melanoma skin cancer (Canadian Cancer Society; Canadian Skin Patient Alliance).

It is true that certain populations are more at risk of developing skin cancer, such as those who have skin cancer in their family, are fair-skinned, or are taking any medication that may suppress their immune system. However, anyone who had frequent or extreme sunburns in adolescence, or continues to spend prolonged, unprotected time in the sun, is dramatically increasing their risk of developing skin cancer.

While some of these circumstances are unavoidable, it is possible to reduce your risk of skin cancer by taking some simple precautionary measures while enjoying your time in the sun.

Prevention

The most important sun safety tip is to limit your exposure to it. Enjoy the outdoors, but take these first precautions:

  • Limit sun exposure between 10am-4pm
  • Cover up as much as possible with light pants or a light, long-sleeved shirt
  • Seek shade whenever possible!
  • Do not use tanning beds

 

Another important sun safety tool at your disposal is sunscreen. Whether you are spending a day at the beach, eating lunch outside, or just running errands, it is important that you apply a sunscreen of at least SPF 30 and that is broad spectrum (if you are in Canada), which will protect you against both UVA and UVB rays. When you apply sunscreen, try to do so 20 minutes before going outside, and use approximately an ounce during each application. Reapply your sunscreen at least once an hour, more frequently if you are sweating or swimming.

Other sunscreen tips include:

  • Carry a travel-sized sunscreen with you at all times, so you are always prepared!
  • Cream or lotion-based sunscreens provide better coverage than sprays.
  • Make a list of the places you often forget, and cover them first– often-forgotten spots include the tops of feet, backs of hands, neck and ears.
  • Don’t forget to wear sunscreen if you’re up the mountain in the winter– snow is reflective, and can increase risk of sunburns!
  • Wear a lip balm with at least SPF 15

 

Detection

Skin cancer has many appearances, and can manifest anywhere on the skin– even under the surface. It is important to know what to look for, and when to seek the advice of a medical professional. Generally, skin cancers are categorized as either melanomas, which in 2017 made up 3.9% of cancers diagnosed in males, and  3.2% of cancers diagnosed in females, or non-melanoma skin cancers, which are recognized to be the most commonly diagnosed cancer among Canadians (Canadian Cancer Society). The most common non-melanoma skin cancers are basal cell carcinoma and squamous cell carcinoma. Both of these, and melanoma, can manifest in the epidermis, the outermost layer of skin. More information about what these moles may look like can be found further along in this blog post, with the “ABCDEFG”s of skin checks.

Assessing a lesion takes less than five minutes, so if you see something new, or an old spot that is changing, see your doctor. Many non-melanoma skin cancers are easily removed or treated.

While checking your skin for moles, you should also be keeping an eye out for actinic keratosis, also known as solar keratosis. Actinic keratosis generally develops in older people on sun-exposed areas of the skin. Actinic keratosis feels like a rough patch on the skin, and may become visible as red scaly patches; it is often confused with eczema. It may feel tender to the touch. If left untreated, actinic keratosis may develop into squamous cell carcinoma.

(“Actinic Keratosis.” Scars Center.)

It is important to know your own skin, so you can be aware of any changes. We would recommend marking your calendar once a month to check your skin, and your loved ones, using the skin-check guide below. 

Steps of a Skin Cancer Self-Exam:

  • Using a mirror in a well-lit room, check the front of your body -face, neck, shoulders, arms, chest, abdomen, thighs and lower legs.
  • Turn sideways, raise your arms and look carefully at the right and left sides of your body, including the underarm area.
  • With a hand-held mirror, check your upper back, neck and scalp. Next, examine your lower back, buttocks, backs of thighs and calves.
  • Examine your forearms, palms, back of the hands, fingernails and in between each finger.
  • Finally, check your feet – the tops, soles, toenails, toes and spaces in between.

(Canadian Dermatology Association, patient handout “Melanoma Skin Cancer: Know the Signs, Save a Life” 2009.)

 

When checking your own skin or that of your loved ones, keep in mind the “ABCDE’s of skin checks.”

  • A – Asymmetry. The shape of one half does not match the other half.
  • B – Border that is irregular. The edges are often ragged, notched, or blurred in outline. The pigment may spread into the surrounding skin.
  • C – Colour that is uneven. Shades of black, brown, and tan may be present. Areas of white, grey, red, pink, or blue may also be seen.
  • D – Diameter. There is a change in size, usually an increase. Melanomas can be tiny, but most are larger than 6 millimeters wide (about 1/4 inch wide).
  • E – Evolving. The mole has changed over the past few weeks or months.
  • F – Firm. Is the mole harder than the surrounding skin?
  • G – Growing. Is the mole gradually getting larger? 

 

If you see any of these signs, see your doctor. Having a lesion assessed takes very little time, and earlier detection means easier treatment.

This melanoma month, don’t forget to practice sun safety, check your skin and your loved ones, and join the fight against skin cancer by supporting patient groups.

 

 

 

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Join Us at our Giving Hope Gala & Auction!

Save Your Skin Foundation is hosting the 2018 Giving Hope Gala and Auction to bring awareness to Melanoma Month, raise funds to support the work of the foundation and the patients we help, and to unify collaborative efforts of involved stakeholders nationwide.
Thursday, May 10, 2018 5-10pm | Cathedral Centre, 65 Church St. Downtown Toronto
Enjoy a casual evening of buffet-style tapas and served hors d’oeuvres, while sipping on cocktails and nibbling decadent desserts – all while supporting an important cause. The fun will include music and dancing, press corner, informative placards, printed takeaways, a goodie bag, and the debut of our new 2018 patient fundraising video.

Click here to buy your tickets!

 If you’d like to support this event but not pay for the ticket, why not do some fund-raising for the cause? We have alternative ticket options to suit any style of support. Just email natalie@saveyourskin.ca
Despite being 90% preventable, over 80,000 cases of skin cancer are diagnosed in Canada each year. Of these, more than 5,000 are melanoma, the mostly deadly form of skin cancer. With incidences of this disease on the rise, awareness, education, and patient support are more crucial than ever.
This one-evening event in Toronto will provide up-to-the-minute information on melanoma statistics in Canada, a recap of sun safety and skin cancer prevention methods and initiatives with Kathy Barnard, the Save Your Skin team, and local stakeholders including physicians, patients, supporters and partners.
FAQs

Are there ID or minimum age requirements to enter the event?

No – everyone is welcome! Kid-friendly

Dress code?

Business casual – and bring your dancing shoes!

How can I contact the organizer with any questions?

Please email natalie@saveyourskin.ca or call 519-270-0834 / 800-460-5832

Do I have to bring my printed ticket to the event?

No, we’ll have our list handy to make it easier for you!

Can I update my registration information?

Yes, feel free to be in touch anytime.

Is it ok if the name on my ticket or registration doesn’t match the person who attends?

Yes

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Reducing Costs to our Healthcare Budget Shouldn’t Cost Canadians Their Lives

You may have read something in the news lately about a move to lower drug prices in Canada. Or you may not. It’s one of those complicated policy issues that is sometimes misrepresented or over-simplified, and can make your head spin trying to understand all the steps, stakeholders and outcomes involved.

On the surface, lowering the price of drugs in Canada sounds like a good thing, right? If it were that simple, we’d say, “Yes, of course!” Unfortunately, there may well be serious consequences to this move. It Is important to consider them before we move forward.

The first thing to note is that the price does not refer to what individuals pay. It refers to what our provincial healthcare bodies pay manufacturers for certain drugs. Last May Canada’s Health Minister announced that there would be a review of how the Canadian government determines the price of drugs, specifically patented medicines such as cancer drugs. That review is now underway with the purpose of reducing public healthcare spending which, again, sounds like a good thing. However, the less obvious result of this move may be that it will hurt patients by delaying and/or reducing access to new and potentially life-saving therapies. Also, drug companies may decide to invest research budgets elsewhere, thus reducing the number of clinical trials available to Canadian patients, either because state-of-the-art standard of care drugs are not available for the trials or because they prefer to invest where it is a more thriving market. Currently, many patients have the valuable opportunities to be treated with leading-edge therapies in clinical trial settings before they become available to the wider public.

While these proposed changes may reduce the price of drugs and therefore costs to the Canadian healthcare budget, it may well also cost some Canadians their lives.

How do we know that? Because we have seen many situations firsthand where critically ill patients could not get a potentially life-saving treatment because it was either not funded or not available in Canada, despite being available in the US or in Europe. The proposed changes may see these situations becoming more commonplace for patients.

A common response to this issue is to place all the blame on the pharmaceutical industry for charging so much for drugs. It is true, many new promising medicines come with a hefty price tag.  It is also a fact that developing a single medicine can cost millions, or even billions, of dollars. Governments presently rely on a joint federal/provincial/territorial process to negotiate pricing that they are willing and able to pay for drugs. The point is that patients cannot be held hostage in a price stand-off between our government and the pharmaceutical industry.

Twenty-eight Canadian patient organizations banded together to ask the Health Minister and Health Canada to delay implementing its proposing pricing regulation changes until it held a comprehensive consultation among all parties, including patient representatives, to ensure these changes do not compromise the standard of care. We urge them to work collaboratively to find solutions that will support a reasonable balance between the three federal pillars of health care being affordability, accessibility and appropriate use. Patient groups have recommended eight potential alternative ways to identify and reduce waste in healthcare spending that do not compromise patients’ access to new and effective treatments that often mean the difference between life or death. We hope Health Canada and the federal government listen.

You can read these recommendations here. These patient groups include:

Canadian Arthritis Patient Alliance
Canadian Cancer Survivor Network
Canadian MPN Network
Canadian Obesity Network
Canadian Psoriasis Network
Canadian Skin Patient Alliance
Canadian Spondylitis Association
Centre Associatif Polyvalent d’Aide Hépatite C (CAPAHC)
Canadian Treatment Action Council
Carcinoid-NeuroEndocrine Tumour Society Canada
Cardiac Health Foundation of Canada
Collective Oncology Network for Exchange
Cancer Care Innovation, Treatment Access and Education (CONECTed)
Colorectal Cancer Canada
Kidney Cancer Canada
Life-Saving Therapies Network
Lung Cancer Canada
Lymphoma Canada
Melanoma Network of Canada
Myeloma Canada
Pancreatic Cancer Canada
Rethink Breast Cancer
Save Your Skin Foundation
Schizophrenia Society of Ontario
Sickle Cell Awareness Group of Ontario
Team Finn
The Canadian CML Network
The Chronic Myelogenous Leukemia Society of Canada
The Lung Association Ontario

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