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melanoma patient support

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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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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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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Updates on our Support of Mental Wellness After Melanoma Diagnosis

In the summer of 2017, Save Your Skin Foundation conducted a patient survey seeking insight on the emotional and psychological impact of a melanoma diagnosis, in order to expand on our personal experiences and to learn how we may be able to help improve support systems for patients and survivors across Canada.

Since the release of the report from that survey (click here to read the report), we have developed a poster for display during our upcoming attendance at the 12th Annual Canadian Melanoma Conference (February 2018). This poster is titled:

THE AFFECTS OF MELANOMA ON THE MENTAL WELLNESS OF PATIENTS, AND THE LANDSCAPE OF MENTAL HEALTH SUPPORT IN THE CANADIAN MELANOMA COMMUNITY

We welcome the discussions that the information in this poster will inspire, and we will continue to bring voice to the challenges that are faced by those who are touched by melanoma skin cancer.

To read the poster we have created from the survey results, please click on the image below to view it in PDF format, in which you will be able to zoom in on the small text and graphs.

The survey was conducted in English using the SurveyMonkey online platform. It was also made available in French for Quebec residents. The English survey was open from August 21, 2017 to September 25, 2017; the French survey was open from August 28, 2017 to September 25, 2017. There were 28 participants in the English survey, and 19 in the French survey. French to English translations were largely performed by our in-house translator, Danika Garneau. The English and French results are combined for the purpose of this project. The poster will provide an overview of the survey results.  For any feedback or questions, please contact natalie@saveyourskin.ca.

To view the complete survey responses, please click here:
Save Your Skin Foundation Mental Health Survey 2017 – English
Sondage sur la Santé Mentale de la Fondation Sauve Ta Peau 2017 – en Francais

Stay tuned for updates on our work in mental wellness and self-care after cancer diagnosis. 

 

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Opening Our Eyes To Ocular Melanoma

Guest blog by our friend: Nigel Deacon, ocular melanoma survivor and patient advocate.

Ocular melanoma

Welcome to the Save Your Skin Foundation website. You are probably here because you or a loved one have been diagnosed with ocular melanoma. It is a big shock to get this news and you are doing well by looking for reliable, sensible, understandable information and guidance.

If you have not yet had treatment, your timing is excellent. Having good information beforehand will be very helpful to you as you discuss the disease, and your options, with your ocular oncologist.

You probably know already that this is a very rare cancer. Fewer than two hundred Canadians per year are diagnosed. It is really important to know as much as possible about how your cancer has presented. How large is the tumour in your eye? Where exactly is it? Both of these pieces of information can make a big difference to your plan. Ask for the reports that your ocular oncologist has, and keep them carefully in a file for future reference. The language is foreign at first but you will quickly learn to be proficient.

Perhaps a good thing to know, as you start the journey, is that half of the people treated for a primary tumour in the eye are then cancer free and that cancer will not spread any further. You will need continuing care of your eye by your ocular oncologist, to preserve as much vision as possible, for health, comfort, or aesthetic reasons, and to be vigilant in case the cancer returns.

(If it turns out that your cancer returns and spreads, please read the section below dedicated to providing information about that.)

As you discuss your disease with your ocular oncologist, please be fully aware that a biopsy of your tumour at the time of treatment holds the secrets to your future. You can find out whether or not your cancer is likely to spread. If you are in the happy 50%, imagine the relief. If you are in the unfortunate 50%, your care plan will be different and early detection gives you much better chances for prolonging your life. Either way you derive benefit.

Some people are frightened of the information. It seems like too much information to have and denial might seem like a better option. Please consider the benefit of having the information. If you don’t want to know, perhaps you could ask your oncologist not to share the information until you are ready, but at least you have it to use it for planning care. The biopsy cannot be performed after the treatment.

It is important to note though that the testing is not 100% accurate as yet and planning for surveillance needs to take that into account too.

For sure, consider joining other patients in a group that is in the same situation as you. There are several different groups to choose from and you should easily be able to find a group that you think is helpful to you. Your participation can vary over time. Meet your own needs for information.

Click here for a list of resources and patient groups to help you

 

Metastatic ocular melanoma

Oh dear. You are probably reading this because you have been given some very sad news. Well, we have to try and make some sense of it. Has your eye cancer (ocular melanoma) been detected in another part of your body? What do you know so far?

Here are some important questions so you can check if you have the answers:

  • Where exactly has the cancer been found?
  • Have you had a PET scan to see if cancer is in other places too?
  • Have you had an MRI (with gadolinium) of the liver to gather the best information?
  • Have you had a biopsy to confirm that it is indeed melanoma?
  • How many tumours are there?
  • What are the exact dimensions of the tumours?
  • Where exactly is each tumour located?
  • If it is in the liver (90% of metastases are found here first), what percentage of the liver is affected?
  • If it is in the liver, is there evidence of miliary disease (peppering, or spots, all over)?

 

If you know the answer to some or all of the questions, you are ready to read on. If the cancer is in the liver (most likely) it is important to focus on liver directed treatment first. Is your oncologist offering radioembolization, immunoembolization or chemoembolization? In rare cases, surgery may be an option. It is possible to have systemic treatment (see below) at the same time as liver directed treatment if your body is well enough. Focussing on the liver is most important though as liver disease is life threatening.

If the cancer is outside the liver, is your oncologist offering you immunotherapy? This is considered a systemic treatment.  There are several variations of this offered in Canada. You can read about which variation is most effective and why. If you are being offered chemotherapy, be very wary. For more than 30 years, patients have been offered dacarbazine as first line therapy and it is clearly proven to be ineffective for ocular melanoma. Treatment options have increased greatly.

If you are in a part of Canada where it is difficult to get treatment for this rare disease, will your oncologist refer you to a larger centre? You may have to fight for this.

Can your oncologist help you enrol in a clinical trial? There are several promising clinical trials recruiting but it is hard for Canadians to get into them. You can enrol if you try really hard. Timing is very important. Sometimes, the window of opportunity closes quickly. You also need to ask whether this particular treatment can bar you from others down the line.

Nigel at the Boston Finish

 

 

Reach out to others who know about the disease or are living with it. We are not alone.

Consider making other changes in your life that help all cancer patients. Sort through your priorities and focus on what is most important. Reflect on your diet and lifestyle and see if you want to make changes there. Diet will not cure cancer but it can certainly help you feel better and stronger.  Try to spend as much time in nature as you can.  Do what makes you happy.  Avoid pursuits that bring unhappiness. Know yourself and what is important to you.  Lean on good friends.  These are just sensible changes to consider.

 

More resources and support: Ocumel Canada, an initiative of Save Your Skin Foundation

 

 

 

NOTE – August 22, 2018: 

Save Your Skin Foundation is looking to improve and increase support of Canadians experiencing diagnosis of primary and/or metastatic ocular melanoma. To this end, in Feb-2018 we launched a survey to be shared across Canada, hoping to reach as many as possible.  The survey is now closed, and we appreciate all of the responses we received, and all of the sharing that our readers did to spread the word about the survey.  We have now completed the report and are working on next steps.  Please click here to read the survey report:  Save Your Skin Foundation Patient Survey: Understanding Ocular Melanoma in Canada

 

Thank you

 

 

The information in this blog is not intended to replace the medical advice of a doctor or healthcare provider.  The content in this blog is based on Nigel’s personal experience and extensive research in Canada and abroad.  If you have any questions about what you have read here please do not hesitate to ask your doctor, and/or you can contact us and we will help to connect you to further information. 

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Melanoma Patient Support Group Webinars

All patients, survivors, family members, and caregivers are invited to join these informal monthly webinars to connect with other patients and survivors across Canada.        Join one or all three:
Thurs, February 1, 2018
Thurs, March 1, 2018
Thurs, April 5, 2018

5pm PST | 8pm EST

We know the importance of having a good support network during difficult times. This is why we decided to organize a recurring support group by Webinar. Although melanoma patients and survivors are scattered all over Canada, these webinars will allow them to talk to others going through similar experiences from the comfort of their own home.  Founder Kathy Barnard will be in attendance, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

CLICK HERE TO REGISTER

Within 48 hours of registering for this webinar, you will receive an email from natalie@saveyourskin.ca providing you with the link and dial-in details for this group call in gotoMeeting. You will be able to choose if you wish to share your webcam with all participants, or participate in call-in mode only.

Thank you, and hope to chat with you soon!

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Giving Hope Gala & Auction, May 10th, 2018, Toronto

You can support the work of the foundation and help provide emotional and financial support to Canadian melanoma patients in need by attending our Giving Hope Gala & Auction.

 

Enjoy buffet-style tapas and served hor d’oeuvres, while sipping on cocktails and nibbling decadent desserts – all while supporting an important cause. The fun will include an interactive photo booth, music, press corner, informative placards, printed takeaways, a goodie bag, and the debut of our new 2018 patient fundraising video.

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 our founder Kathy Barnard, the Save Your Skin team, and local stakeholders including physicians, patients, supporters and partners.

 

 

This year, over 1,200 Canadians will lose their lives to melanoma skin cancer.  

With incidences of this disease on the rise, awareness, education, and patient support are more crucial than ever.

Please help us make a difference.

 

 

For 2018 Giving Hope Gala & Auction sponsorship inquiries, tickets or questions, please contact Natalie at natalie@saveyourskin.ca or call 1-800-460-5832

 

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Holiday Melanoma Patient Support Webinar

Join our Holiday Patient Support Webinar on Thursday, Dec 28, 2017 at 1pm PST | 4pm EST.

All patients, family members, and caregivers are invited to join this informal, free webinar to share and connect with patients and survivors across Canada.

Click HERE to register

Save Your Skin Foundation knows the importance of having a good support network during difficult times. This is why we had the idea to organize a support group by Webinar. Since we are scattered all over Canada, we thought it would be a good idea to be able to talk to people and hear them, but in the comfort of your own home. Founder Kathy Barnard will be available to discuss, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

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The Save Your Skin Foundation Story – A Niece’s Perspective

You may have read the Save Your Skin Foundation’s story on the Foundation’s website here…but, as you probably know, everyone has their own story – and Founder and President, Kathleen Barnard’s niece has kindly shared one of her own. Thank you for your inspiring and beautiful story Taylor!

“In May of 2003, I wanted to be an astronaut; a pretty common dream for a child of ten. A less common aspect of my “studying” to be an astronaut was that it was all practical. On any given night you could find myself and Kathleen Barnard – my aunt, neighbour, and favourite person in the world – on her back deck, drinking hot chocolate while I pointed out constellations to her. Also in May of 2003, Kathleen was diagnosed with stage three malignant melanoma.

Melanoma is the most aggressive form of skin cancer, the result of a life spent outdoors. For Kath, this was often on a baseball diamond, either playing or coaching the team of myself or one of her two sons. The cancer manifested itself in a tumour on Kath’s arm, the size of which my family (myself excluded, as I was ten and oblivious) had been watching anxiously. Upon hearing the news, I can assume that Kath was as flawlessly optimistic as she has been every day since. I can confidently say that the only hope or happiness any of us had in that time was in watching Kath’s determination to beat the disease, and her strength has inspired all of us to be stronger in our own lives.

The first form of treatment Kath would undergo was Interferon, which involves a self-injection three nights a week for a year, accompanied by the side effects of hair and weight loss, and flu-like symptoms. Not a process for the faint of heart. Here, I should mention that I was only told about Kath’s illness after she had begun receiving treatments, when her physical changes were going to become too obvious to ignore; the fact that I had no idea that this was going on before she told me, demonstrates how strong she was, continuing to live her normal life by going to work and continuing to coach my softball team for as long as she could. After her year of treatment, we received the news that she was cancer free, and all of us, Kath especially, looked forward to resuming our normal lives.

A year later, in the May of 2005, one of Kath’s checkups revealed a tumour on her lung. Not only had the cancer returned, but had advanced to stage four: the most aggressive stage. This time, Kath underwent Chemotherapy. I was growing older and more terrified at the prospect of losing my aunt, and my life essentially consisted of crying in bed, then crying in my mom’s bed, then getting up and crying at school. Kath’s attitude, however, juxtaposed all of ours; she hosted family dinners and trips to Whistler, getting us all together as much as she could. She would always have some surprise up her sleeve, such as bringing a collection of children’s musical instruments to make a family band (I’m not joking), or Christmas crafts for us to do in Whistler. Even while there was talk of removing her entire lung as the tumour grew, and as her cancer metastasized to her kidney, liver, bones and ribs, she never lost her smile, or showed us how exhausted she must have been.

After extensive and desperate google searches, my cousin found a Doctor in Edmonton who was running a trial drug called Interleukin. The drug had showed positive results in 16% of trial subjects at that point, and no one had yet survived the entire treatment. The trial required Kath (and another member of our family-her husband, one of her sons, or my mom) to fly to Edmonton every second week to spend the full week in intensive care, receiving the drug though an IV every eight hours. While I never went with Kath (though I donated all my pocket money to her flights!), I gathered that the side effects of this treatment included nausea, weight gain, a rash, and low blood pressure. To help herself persevere through the treatment, Kath would write something on each bag to inspire her: things like the names of her family, friends, the girls on my softball team, future vacation destinations. She never complained; on her tongue instead were a million reasons her fight was worthwhile.

After four rounds of Interleukin, Kath was finally declared to be in remission. However, instead of trying to push the thought of cancer out of her mind, Kath and her amazing sister (and my mom) Rosemary decided to start the Save Your Skin Foundation. The fact that you are reading this anecdote right now proves that Kath’s enthusiasm paid off, and the foundation is successful. The Save Your Skin foundation seeks to promote the prevention of skin cancers, such as melanoma, via education and awareness. It also helps provide families struggling with the disease with personal and financial support in finding trial drugs. In short, the Foundation tries to prevent other families from going through what our own family did.

Unfortunately, the struggle was not over for Kath. In 2007, a CT scan showed the presence of a tumour in her small intestine. It was stage four malignant melanoma again, and Kath was immediately hospitalized and given an invasive surgery to relieve the pressure on her intestine. Her surgery and re-starting treatments did nothing but increase Kath’s drive to make sure the Save Your Skin Foundation was a success. She began putting together a Save Your Skin booth at local events, run by our family and friends, to get the Foundation out there as much as possible.

By February of 2008, Kath was flying back and forth between Edmonton and Vancouver again, but this time every twenty-one days and to receive the new trial immunotherapy Yervoy. She had been given four rounds of Yervoy when a new tumour was discovered in her kidney – an organ that she had to have removed in January 2009. After countless late night tea and creamsicle runs, it was over. That surgery, and January 2009, marks the date when Kath’s real remission began, and she has been cancer free ever since.

Since 2006, Kath has worked tirelessly to help the Save Your Skin Foundation grow, and I am pleased to report that it is now an international organization. Along the way, Kath and Save Your Skin have helped so many families who are lost upon receiving their diagnosis. A look at the ‘Survivor Stories’ and ‘Memory of our Friends’ section of the SYS website demonstrates how much amazing work Kath and Save Your Skin has done. I have truly never seen someone so passionate about their work, which is even more impressive when this person should be exhausted.

I am so honoured to be involved in such an important organization, so proud of my aunt, and so endlessly thankful that she’s still here with us. Though I no longer want to travel to space, I’m very grateful that Kath and I are still able to drink hot chocolate on the back deck and look at the stars.”

Thank you again for your story Taylor!

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I’m Living Proof Connects Melanoma Patients and Survivors

When Save Your Skin Founder Kathy Barnard was diagnosed with Metastatic Malignant Melanoma in 2003, the first thing she did was look to the internet for anything that would inspire optimism for her prognosis; hopeful news, survivors, or treatment options. She didn’t find much.

From this experience was created the “I’m Living Proof” initiative and website, intended to provide a wealth of information, resources, and support to those touched by cancer, while also connecting patients and their families to a community of survivors who have shared their stories. This initiative was borne from Kathy’s desire to ensure that those diagnosed with melanoma know that surviving melanoma is possible –“I’m Living Proof”.

Visitors to the site are encouraged to read participating patients’ stories, and they are given the option to connect with these patients via a secure form privately shared between the Save Your Skin Foundation team in collaboration with the person wishing to connect with other patients or survivors.

An interactive map serves as a method for patients and survivors to reach people across Canada and around the world.

 

On the map we use stars to represent survivors; we do this to inspire everyone already diagnosed, and those who will be diagnosed, to reach for the stars because there is hope for survival. Those of us surviving melanoma today are living proof of that. We also hold stars close to our heart as we remember those we’ve loved and lost to melanoma. These individuals are our stars in the sky, which is why Save Your Skin donates an actual star to the family of every melanoma patient we lose with a connection to the foundation.

To give you a bigger and better interactive map for which to connect with other patients, we have moved the former I’m Living Proof website to be housed right here under our very own SYSF site. Click HERE to see the map!

 

Please feel free to check out our map and click on the stars in locations across Canada to read the stories and see videos of fellow melanoma survivors.  If you feel you would like to speak with one of these folks, you can fill out a quick form and we will send your request to the person you wish to meet via email.

If you would like to share your story and join our support community via a star on the map or otherwise, you can click here to fill out a quick form to let us know you’d like to be in touch.

Tell us a little about yourself!  And what you think about this program.  We are here to help: Hand in hand we fight melanoma together. 

Welcome!

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