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melanoma patient support

Introducing: Ocumel Canada

For the past year, Save Your Skin Foundation has been working with ocular melanoma (OM) survivor and advocate Nigel Deacon, to improve OM patient care across the country. Together we created a survey and resulting report in order to gain insight into the Canadian OM patient journey, and we have connected with innovative OM treatment researchers as well as explored testing options in Canada for ocular melanoma, also known as uveal melanoma. Additionally, we have partnered with OM patient support groups around the world, such as Cure OM (an initiative of the Melanoma Research Foundation, United States), and Ocumel Ireland and Ocumel UK.

We are inspired by the work being done by these groups, and by the feedback we receive from patients who need better support in their diagnoses of primary and/or metastatic ocular melanoma, to work toward better and more standardized care in all provinces in Canada. We have identified gaps in OM patient care which can vary from centre to centre, and we recognize the need to advocate for patients to receive treatment for their disease, especially when it is metastatic.

In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, we have created a dedicated initiative called Ocumel Canada, which will serve as our platform for increasing education and community around the topic.

Ocumel Canada strives to do the following:

  • Advocate for early detection of ocular melanoma
  • Enable access to early treatment of primary ocular melanoma
  • Work towards a consistent approach to treatment of metastatic ocular melanoma
  • Support patients who have been diagnosed with primary or metastatic ocular melanoma
  • Build a network of support for patients and caregivers

 

Ocumel Canada will work with health care providers and HTA decision-makers across Canada to improve ocular melanoma patient outcomes. We applaud the work being done at the two busiest centres for referrals, and we wish to help extend treatment options to patients in remote areas and to provinces who do not currently participate in the same practices available to OM patients in areas such as Toronto, Ontario. Advocacy for increased patient access to clinical trials, even if in other countries, is also an aim for Ocumel Canada.

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

Click here to read the press release: Launch of OCUMEL CANADA Offers New Hope for Canadians Diagnosed with Rare Ocular Melanoma

Stay tuned for updates on our progress!  And tune in Friday February 15, 2019 to our webinar Ocular Melanoma: Innovative Treatments and Beyond, with Dr. Butler of Princess Margaret Cancer Centre, and Dr. Hamid from The Angeles Clinic and Research Institute, in Los Angeles, California, U.S. This webinar will provide an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler will share their knowledge of current practices and care pathways, identifying the most pressing needs for patients.  They will also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon will share his experience with this rare cancer; Kathy Barnard will facilitate the discussion.

For more information about ocular melanoma and the Ocumel Canada initiative, please feel free to explore the information we have put together for our website at www.ocumelcanada.ca , email ocumelcanada@saveyourskin.ca, or call us at 1-800-460-5832. 

We have created the following pages to provide up-to-date links and resources:

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

Ocumel Canada – 2018/2019 Strategic Plan

https://www.instagram.com/p/BsqaD2xgyf6/

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SYSF Webinar: Treatment Options for Melanoma Patients in the Adjuvant Setting

Join us for this free webinar, which reviews the latest news and clinical data related to melanoma treatment in the adjuvant setting, as presented in the 2018 conference season.

‘Adjuvant’ refers to patients with a stage II or stage III diagnosis. The majority of adjuvant patients typically undergo surgery to have their tumour(s) removed, but are not given immunotherapy or targeted therapy to prevent recurrence of the disease despite a known high-risk of relapse and mortality. Melanoma is an aggressive cancer; stage III melanoma means the cancer has spread from skin cells into the lymphatic system, and poses a dangerous risk for spread to organs, which is what depicts a stage IV diagnosis.

Dr. Claveau shares his key insights into what the landscape of adjuvant melanoma immuno-oncology treatment looks like for the near future in Canada. Dr. Adrian Gunaratne details the science behind targeted therapy and what is coming for Canadian melanoma patients in the adjuvant setting with a BRAF positive mutation. The discussion continues with a patient and a caregiver both having had treatment access challenges in the adjuvant melanoma setting, and how their experiences impacted their lives and that of their families.

Presenters:

  • Dr. Joel Claveau, Medical Oncologist, Hotel-Dieu de Quebec, Université Laval, Quebec City, QC
  • Adrian Gunaratne, PhD, Medical Science Liaison – Solid Tumors, Novartis Pharmaceuticals Canada
  • Natalie Richardson, Adjuvant Melanoma Patient, Managing Director, Save Your Skin Foundation
  • Eyyub Hajiyev, Caregiver to a loved one recently diagnosed with melanoma in the adjuvant setting

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SYSF Teams up with La Roche-Posay Canada at OneWalk Toronto 2018

Last weekend I went for a 15 kilometre walk— as in, 15 kilometres all at once. Two short years ago I could not have done that, being in recovery from surgeries and treatment for advanced melanoma, I was not physically or psychologically capable of such a feat. This year however, I was grateful to walk 15 kilometres (in 3.25 hours!) alongside a team dedicated to raising funds for melanoma research at Princess Margaret Cancer Centre in Toronto.

I was motivated to join this team this past spring, when our new sponsor La Roche-Posay Canada told me they were doing the OneWalk Toronto 2018, and suggested perhaps I could join them as a representative of melanoma survivors and Save Your Skin Foundation (SYSF).  I was thrilled but also anxious about this idea – could I really do it?

We each had a fund-raising goal and friendly instructions to meet at Nathan Phillips Square in downtown Toronto on Saturday September 8, 2018 at 7:30am. Being as I was a guest on the team I didn’t have to do any of the heavy lifting, but I was there early enough to witness the hard-working team at La Roche-Posay (LRP) setting up, distributing sunscreen samples, and greeting walkers with encouraging smiles and high-fives.

I was thrilled to meet some of the folks I had been speaking or emailing with for months – it was so great to put faces with names. I had done events with LRP in the past, but this was a large local project in which SYSF and I both feel quite invested.

La Roche-Posay, with their sunscreen line, is a huge proponent of melanoma prevention, and the partnership we were demonstrating at the OneWalk was that of awareness and education. LRP is also a sponsor of the OneWalk Toronto event and were obviously enthusiastic about being able to bring awareness to sun safety and skin cancer prevention to all participants. They had a shade tent and sunscreen samples and tester bar, as well as their new “My UV Patch.”

My initiation into the team that morning was the presentation of my name tag and lanyard for the walk. I did not expect the rush of emotion when my new friend put my lanyard on me – it was a special coloured one, reserved for the cancer survivors of the crowd.

Not having participated in the OneWalk before, I was unexpectedly dazzled by the supportive community and encouragement to cancer patients and survivors at the event. Everyone everywhere was respectful of and very loving to those of us with the rainbow lanyards.

At one point during the opening ceremonies, the MC asked everyone with a rainbow lanyard to remain standing, and everyone else to kneel on one knee. Our team happened to be at the front near the stage, so when this happened I was glad I had my back to most of the hundreds of people in the square all around me – my tears were flowing at this point – I was so overwhelmed I almost got down on one knee too. I was incredibly humbled by the honour I felt by this moment of silence in cancer survivors’ memory and support.

Team LRP raised over $20 000 for Princess Margaret Cancer Centre, a decent portion of the total raised $4.7 million by 3200 walkers from all over Canada. I could clearly see why the event is so successful; it is very well organized, and cancer patient care is the obvious topic at hand. Princess Margaret Cancer Centre staff and supporters made speeches in the opening ceremonies, and a couple of the Research Team Leads also got up on stage to address the crowd. Overall, it was a fabulous representation of this centre, which happens to be one of the top five in the world for cancer care research and innovation.

Even one of our Medical Oncologist friends and SYSF Medical Advisory Board members from PMH was present – he had done the Friday evening NightWalk – but he came after lunch Saturday to meet with the La Roche-Posay team. I am thrilled to report I got a hug from him; I couldn’t stop more tears when he thanked me for participating in the event. It’s not very often I get to thank him in person for all that the HE does for melanoma patients like me.

I’d like to extend huge thanks to my new friends from Team La Roche-Posay Canada, not only for their warm welcome and hard work at OneWalk Toronto 2018, but also for their dedication to skin cancer prevention and awareness all year-round. I look forward to helping facilitate the initiatives Save Your Skin Foundation and La Roche-Posay will be working on together – stay tuned for updates!

Team LRP with Toronto Mayor John Tory

Team LRP at the Finish!

 

By Natalie Richardson,

Metastatic melanoma survivor and advocate, Managing Director, Save Your Skin Foundation

 

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SYSF Survey! Melanoma Treatments for Adjuvant Patients

Save Your Skin has the opportunity to submit patient feedback to the pCODR process for the two treatments coming to the Adjuvant setting for Melanoma patients in Canada.  To learn more about the drug approval process and our involvement as a patient representation group, please visit our page: “Let’s Chat: Patient Submissions and Discussion

We believe the ability of stage I, II, and II melanoma patients to receive innovative treatments is key to survival, and to the reduction of progression to stage IV disease.

To inform our upcoming submission, we have created a short survey and request that any and all patients touched by melanoma complete the survey to have their voices heard.  This survey is open globally, to all stage melanoma patients at any point in their journey; but we request that IF you are a metastatic patient taking the survey, but were diagnosed at stage 1, 2 or 3 could you please take some time to remember back to those days and fill in what you can in the survey pertaining to those times.  Were you offered a treatment, were you advised to “wait and watch” and what were those times like for you and your family.

This anonymous survey is now closed.  We thank all who shared their time and experience in responding to the survey.  Stay tuned for news of our completed submission to pCODR and INESSS.

If you have any questions or feedback about this topic or the survey itself, please email info@saveyourskin.ca

Thank you! 

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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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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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