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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritising our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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Move for Melanoma 2022 – It’s a Wrap

A tremendous THANK YOU to all of our incredibly dedicated participants and generous donors!

74 participants and 20 teams across Canada took part in Move for Melanoma this year! We have been so moved and inspired by this incredible community of patients, families, and friends.

After the success of last year, we once again set ourselves an ambitious goal of raising $75,000. With your help, we ended up surpassing our goal once again this year!


To wrap up this monumental weekend, we’ve created the Recap Video below. We hope you will take a few moments to watch it as we pay tribute to our incredible participants, donors and sponsors across Canada.


We’d also like to highlight the three fundraising teams that raised the most this year.

Team Ocumel Canada

Based in Victoria, BC, Team Captain Nigel Deacon ran a marathon distance to inspire others to donate to this worthy cause. Together with his fellow team members Martin Dawes and Linda Sendall, they raised an incredible $11,760 for ocular melanoma patients.

Check out his team page here.

 


Team Ani’s Keepers

Based in Chilliwack, BC, Ani Davidson and her sisters challenged themselves to complete a combined 10,000 minutes of fitness between them in the month of September – and they crushed that goal, completing 11,820 minutes! Ani is currently undergoing treatment for melanoma.

Check out her team page here.


Team Mela-No-More – In Honour of Laura

Based in Vancouver, BC, Team Mela-No-More raised funds in honour of Laura, whom they lost after a long and courageous fight. Laura was a beautiful and strong woman, wife and mother. The team raised almost $5,370

Check out their team page here.


Finally, we’d like to acknowledge the many businesses that stepped up to support our event this year. Please show them your support!

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Move for Melanoma 2022

Move for Melanoma is an activity challenge that takes place across Canada. The goal of the event is to bring awareness to melanoma, non-melanoma skin cancer and ocular melanoma, while raising funds to support patients affected with these diseases when they need it most.

This year, the event will take place on September 23-25th, 2022. As always, participants will be able to choose a physical challenge of their choice to complete on the weekend of the event. Participants will form teams and, together with their friends and family, try to reach their personal fundraising goals.

To facilitate the whole thing, again this year, we will be using a custom website that allows people to register, donate, solicit donations, track progress and promote the event all in one place. The website also includes many resources for participants to help them get ready, and a Q&A page for more information.

If you’re interested in joining us, please visit Move for Melanoma 2022 and register now.

 

Save Your Skin Foundation is the only organization in Canada that supports skin cancer patients financially when they need it most. All the money raised through your donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Whether you’re a survivor who wants to bring hope to newly diagnosed patients, the family member or friend of a patient who wants to send a powerful message of solidarity, or a patient who wants to help change the face of cancer for ever, we invite you to take a stand against melanoma and to move with us this September!

Hand in hand, we fight melanoma together!

          

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Move for Melanoma 2021

Move for Melanoma is back!

This year, we’ll be joined by Vancouver Canucks’ JT Miller and his wife Natalie to raise funds for melanoma skin cancer. 

Move for Melanoma is an activity challenge that takes place across Canada. The goal of the event is to bring awareness to melanoma, non-melanoma skin cancer and ocular melanoma, while raising funds to support patients affected with these illnesses when they need it most.

This year, the event will take place on September 25-26th, 2021. As always, participants will be able to choose a physical challenge of their choice to complete on the weekend of the event. Participants will form teams and, together with their friends and family, try to reach their personal fundraising goals.

To facilitate the whole thing, again this year we will be using a custom website that allows people to register, donate, solicit donations, track progress and promote the event all in one place. The website also includes many resources for participants to help them get ready, and a Q&A page for more information.

If you’re interested in joining us, please visit Move for Melanoma 2021 and register now.

 

Save Your Skin Foundation is the only organization in Canada that supports skin cancer patients financially when they need it most. All the money raised through your donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Whether you’re a survivor who wants to bring hope to newly diagnosed patients, the family member or friend of a patient who wants to send a powerful message of solidarity, or a patient who wants to help change the face of cancer for ever, we invite you to take a stand against melanoma and to move with us this September!

Hand in hand, we fight melanoma together!

          

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SYSF Around the World

“SYSF works hard to bring resources from around the world to give Canadian skin cancer patients the latest information on treatment options and disease management.

This year our May campaigns have gone around the globe – from our long-standing participation in the Global Coalition for Melanoma Patient Advocacy with the Melanoma Research Foundation to the Melanoma International Patient Advocates Coalition with AIM at Melanoma to Ocumel Canada’s partnership with the US, the UK, Ireland and Australia, all the way home to the NCCN Guidelines created in the US but used by our own Health Care Providers in Canada.

We hope you enjoy these resources and welcome questions or feedback any time.”

Natalie Richardson, Managing Director, SYSF

We are very pleased to congratulate the National Comprehensive Cancer Network on the release of a new valuable patient/caregiver resource! Save Your Skin Foundation is proud to have provided endorsement for the Guide and have our Managing Director Natalie featured on the cover!

The new NCCN Guidelines for Patients® on Melanoma provides an extremely comprehensive and informational reference for patients covering melanoma basics, testing, staging, treatment and recurrence. 

Click HERE to view and download the Guidelines

 

In collaboration with the Global Coalition for Melanoma Patient Advocacy, hosted by the Melanoma Research Foundation in the United States, Save Your Skin Foundation participated in the making of this skin check awareness video for Melanoma Awareness Month 2021, featuring melanoma patients and caregivers from across the globe demonstrating that the time it takes to do a skin self-exam is the same as that of drinking a cup of coffee. Check it out:

Need help performing a self skin check? Click here for a video tutorial!

 

Also:

Save Your Skin Foundation is a proud member of MI-PAC, a coalition of organizations across the globe committed to reducing the global melanoma burden through education, advocacy, and collaboration. MIPAC, hosted by AIM at Melanoma in the United States, works to increase awareness and change public perceptions of melanoma, empower melanoma patients to take an active role in their care, and effect change in regulatory policies to optimize treatment and care.

Watch for our upcoming patient stories and continued awareness initiatives right here at home in Canada!  For more information or support please contact us at kathy@saveyourskin.ca / 1.800.460.5832

 

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A Viking’s Challenge – March 2020

Melanoma patient Chris Isfeld is preparing for a 30 km race in subzero temperatures across frozen Lake Winnipeg. He’ll be racing his childhood friend Shawn Bjornsson to raise funds for Save Your Skin Foundation.

The event, which he’s calling A Vikings Challenge, will take place on March 7, 2020.

His Story

Chris Isfeld’s story with cancer starts in 2017. After dealing with back pain for a number of months, he felt sudden excruciating pain in his side. An ultrasound revealed lesions on his liver and large masses on his adrenals. A biopsy of the lesions confirmed  evidence of Melanoma. His scans revealed that the disease was very advanced and the tumor burden was severe.

Very quickly, the pain intensified. Chris had to go to the ER only a month after the biopsy. It was there he realized that he was partially paralyzed from the waist down. The doctors thought that his journey was coming to an end.

Chris was given lifesaving immunotherapy treatment just in time. The treatment was challenging but it proved to be effective. The cancer stopped growing and the side effects became more manageable over the next few months. Soon, he was walking again. By December 2018, just one year after his melanoma diagnosis, he was lacing up his running shoes again. 

The results of his latest PET/CT scan, on November 2, 2019, show an almost complete metabolic response; he is well on the way to becoming NED (No Evidence of Disease).

The Challenge

Chris had been frequently running and practicing yoga to overcome the physical and emotional anguish he was feeling.

In a recent interview with Global News, he said:

“A friend of mine, Shawn Bjornsson from Winnipeg, posted a photo after he did a 5K run in -40, and for some reason, I just made a comment and said, ‘Hey, I’ll race you across the lake,’ just as a joke, But a week later, I thought about it, and thought, ‘You know what, this is an absolutely great idea.’

“It gives me something to focus on, and obviously with my diagnosis, I had gotten to know the people at Save Your Skin Foundation very well, and decided that I should do it as a fundraiser and raise money for them.”

The Race

True to their Viking roots, neither of them can back down from a challenge. On March 7, 2020, the first ever ‘Ice Run Across Lake Winnipeg’ will take place. The race will be about 30 km from Grand Beach, Manitoba to Gimli, Manitoba. They will be running to raise money for Save Your Skin Foundation.

Chris is already a quarter of the way to his goal of raising $30,000 for Save Your Skin Foundation. To learn more about Chris’s story or to donate to his campaign, visit his fundraising page here.

For sponsorship info, please contact: chris.i@designerclosetguys.com

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Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

May is Melanoma Awareness Month and it’s the perfect time of year to review a few easy steps we can all take to Be Sun Safe!

Spread Awareness

Join us in spreading the word about Melanoma Month by using one of our facebook banners as your cover photo! They are available for download HERE:

Sun Safety

Help us share the message about Sun Safety! Download our Sun Safety infographics by clicking on the images below and share with your friends and family!

      

Examine Your Skin

Learn how to perform a monthly skin self-exam!  When caught early, skin cancer is very treatable.

Patient Support

For those living with melanoma, support can be vital to the healing process. Save Your Skin Foundation provides a collection of resources as well as several ways for patients to connect with others or with private support. If you know someone touched by melanoma, please help them to connect with us.

We provide one-on-one support through Founder Kathy Barnard. We also provide support from other patients and survivors through our initiative “I’m Living Proof”

Click HERE for a summary of the ways you can connect with other patients, survivors, and caregivers touched by melanoma and non-melanoma skin cancers, and ocular melanoma.

Press Release

If you’re interested in what Save Your Skin is working on for Melanoma Awareness Month, check out our official press release, which includes vital information about melanoma rates in Canada, prevention and detection, and how to support those battling skin cancer.

Public Service Announcement

Click here to watch our new video cut about sun safety and skin cancer awareness:

 

 

Stay tuned for more updates throughout May – Melanoma Awareness Month!

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National Post: Therapeutic Spotlight on Immuno-Oncology

On September 26, 2018, you may have seen a special insert in the paper version of the National Post across the country, featuring eight pages of informative articles about immunotherapy, an innovative treatment proving successful in several cancer indications.  This special content is the result of a collaboration between sponsoring funders, patient group representatives, and the folks at a group called Patient Diaries.  Over the years, Patient Diaries has coordinated several series such as this, raising awareness of various diseases and their effective treatments.                                                        This time they chose to highlight Immuno-Oncology.

Researchers and clinicians treating metastatic melanoma have been seeing success with these therapies for about ten years, but the growing use of and experimentation with them in recent years has been the topic of discussion at countless oncology conferences and treatment centres around the world.  In fact, just last month the 2018 Nobel Prize in Physiology or Medicine was awarded to James P. Allison and Tasuku Honjo for their discovery of cancer therapy by inhibition of negative immune regulation: immunotherapy.

Save Your Skin Foundation openly discusses the need for access to these treatments by melanoma patients across Canada, and we jumped on the opportunity to be the primary patient group sponsor of this feature, sharing our collective patient experience with these therapies. On page six of the insert there was an article in which both Kathy Barnard and Natalie Richardson of Save Your Skin were interviewed.  We were also given half a page to display informative anecdotes about ourselves and raise awareness of our ongoing support of skin cancer patients.

In addition to the paper version of the Therapeutic Spotlight, a digital space has been placed on the National Post website.  SYSF awareness spots and our patient video from May 2018 can be seen throughout the Immuno-Oncology board – please feel free to take a look around.  There are additional informative articles about innovative treatments for lung cancer, leukemia, and breast cancer.

There is also a blog written by Natalie Richardson, melanoma survivor and Managing Director of SYSF, discussing the barriers to treatment access that many Canadian patients face.  Click here to read the blog: Cancer Patients Receive Unequal Treatment Depending on Stage or Postal Code

To see what else SYSF is talking about, click here to visit our MEDIA page!

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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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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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