A good read for the #cansky community here. #Qol #survivorship

Vicky Forster@vickyyyf.bsky.social · yesterday

www.cancertherapyadvisor.com/features/men...

Love this: "Patient voice can sharpen study design, clarify endpoints that matter, improve communication, support enrollment and retention, and build trust across the research ecosystem" #PPI #clinicaltrials #cancer

Lawrence (Larry) Mróz@drmroz.bsky.social · last wk.

Abstract IA07: From Pipeline to Person: Patient Engagement in RAS Drug Development | Clinical Cancer Research | American Association for Cancer Research aacrjournals.org/clincancerre...

- How I became an advocate? - How do I advocate? - What is exciting about advocacy? - What are the downsides of advocacy? - What tips can I share with other fellow advocates? www.youtube.com/watch?v=5v83... #Advocacy #Change #CIHR #PublicInterestGroupOnCancer #PatientPartnership #PublicOutreach

How I became an advocate!

YouTube video by svt svs

youtube.com

If ever there was a call for patient preference, this would be it. Lack of such data for FDA is no reason not to collect real-world patient experience data now. As a pt currently on IV pembrolizumab, I would give my right arm for subq alternative. 100%.

OncLive@onclive.bsky.social · 3w ago

The integration of subcutaneous pembrolizumab into practice has raised cost and convenience questions, according to Laure-Anne Teuwen, MD, PhD. Read more on her perspectives here #oncology www.onclive.com/view/subcuta...

I've been following this cyclospora outbreak story (and writing for Forbes) and now would be a good time to stop eating any uncooked fresh produce from the U.S. The CDC are investigating but no source/s identified yet. Canadian fresh produce is a much better bet. Never a better time to buy Canadian

Hey #Cansky ! If you didn’t know, now, we have a group message for members! We have 15 people in there now, and you can have up to 50! Looking to hopefully add more and more members so we can make this more of a community!🫶🏻 bsky.app/chat/itzxP7o

What does “optimal” SDM look like? 💡 Our network, the Global Cancer Coalitions Network (GCCN), sets out 3 core elements in its new infographic: clinical evidence and expertise, patient preferences and goals, and biological, psychological and social context, (1/2)

Good news! This immunotherapy cancer #patient survey now has #IRB approval. Please share w/#patients so we can learn from them. #cansky #medsky #health

Hey paging all of #CanSky #OncSky #Cancer patients and survivors. We have a community group now we want to build on! It’s easy to join just click the link below 👇👇 bsky.app/chat/itzxP7o

Thank you again to all that helped make #WorldKidneyCancerDay a success! As a reminder, the Emotional Wellbeing Global Symposium is available on YouTube with auto-translated subtitles: www.youtube.com/watch?v=LfO_... We're looking forward to the next #WKCD on 17 June 2027.

Sid's trying to build a little cancer patient/carer community here on BlueSky - why not join? #cansky #cancer

Sid Sadler@sadlersnaps.bsky.social · last mo.

Hey all my #Cansky and #Cancer folks. I made a little group here, to get this community talking more over here on BlueSky! Join now! Patients or caregivers, doesn’t matter 🫶🏻. bsky.app/chat/itzxP7o

We are grateful to the sponsors and partners who share our commitment to raising awareness for kidney cancer and the emotional burden of living with the disease. Check out the video below featuring Reno and Rina – a kidney love story for #WorldKidneyCancerDay. (1/2)

@care1project.bsky.social A great pragmatic trial that will improve the capturing of real world patient experience using ePROs, and advanced and more relevant #QoL measurements. #kidneycancer #wkcd

International Kidney Cancer Coalition@ikccorg.bsky.social · 2mo ago

#ResearchInitiativesHighlight: For World Kidney Cancer Day 2026, IKCC wishes to highlight the CARE1 European project. This Pragmatic Clinical Trial is a European phase III multi-centre study of first-line treatment for metastatic kidney cancer. (1/4)

The recording of the #WorldKidneyCancerDay Emotional Wellbeing Global Symposium is now available on YouTube! Watch it with auto-translated subtitles: www.youtube.com/watch?v=LfO_... #WKCD

World Kidney Cancer Day Emotional Wellbeing Global Symposium

YouTube video by International Kidney Cancer Coalition (IKCC)

youtube.com

Two images for #WorldKidneCancerDay #WKCD Before checkpoint inhibitor. During checkpoint inhibitor treatment The Emotional Burden is real. The Quality of Life difference is enormous. Just trying to survive the Side Effects day by day. Mood is fragile at best. Honest. @ikccorg.bsky.social

#wkcd2026

Craig Gedye@craiggedye.bsky.social · 2mo ago

On World Kidney Cancer Day, it's incredible to reflect what progress has been made, but how much there is still to go. This recent paper shows what we might be possible if every person with advanced #kidneycancer could experience a complete response to immunotherapy www.ejcancer.com/article/S095...

Want to learn more about the importance of emotional wellbeing in cancer care? Hear from a panel of experts, including psycho-oncologist Dr Cristiane Bergerot (BR), at the Emotional Wellbeing Global Symposium on World Kidney Cancer Day (18 June). (1/2)

Join the #WorldKidneyCancerDay Emotional Wellbeing Global Symposium! Patients, caregivers, and healthcare professionals from around the world will come together to discuss the emotional challenges of living with #KidneyCancer. Register: https://www.worldkidneycancerday.org/ #AcceleratingCures

Join the global kidney cancer community at this #WorldKidneyCancerDay event on 18 June at 2 p.m. CEST. Register now at www.worldkidneycancerday.org #WKCD (3/3)

Have you registered for the Global Patient and Carer Symposium yet? The online expert panel will address emotional wellbeing while living with kidney cancer. (1/3)

#WorldKidneyCancerDay is now less than 9 days away! Looking for material to share? We have a range of campaign assets in 13 languages, many of which can be customised with your local organisation’s logo. Find them all at www.worldkidneycancerday.org/resources/ #WKCD

Really important #clinicaltrial opportunity for #kidneycancer patients in UK. More sites to open! Patient partners include @ikccorg.bsky.social and ARTur (FR). Will support informed decision making and further RCC research to guide patients for years to come. @care1project.bsky.social

CARE1 Project@care1project.bsky.social · 2mo ago

CARE1 is growing in the UK! New participating site now open: • Royal Free London Expanding access to our EU-funded phase III pragmatic trial addressing a key question in 1L mRCC: IO-IO or IO-TKI? #clinicalresearch #oncology #RCC #clinicaltrials #care1pct #care1project @ikccorg.bsky.social

Bravo to Dr Elizabeth Nally and colleagues @qmbci.bsky.social for this much-needed research that explores adjuvant immunotherapy toxicity from patient lens, current Qol measures, and decision regret www.urotoday.com/conference-h... #ASCO26 #kidneycancer

Looking forward to expert discussion on RAMPART. Interesting that monotherapy arm was negative. Side effects significant in double immunotherapy, but no meaningful difference in Qol? Note: 3 grade 5 events (deaths)in Adjuvant setting. #kidneycancer #kcsm #ASCO26

OncLive@onclive.bsky.social · 2mo ago

🏥 #ASCO26 update in kidney cancer: Adjuvant durvalumab + tremelimumab demonstrated a disease-free survival advantage vs active monitoring in patients with resected RCC, although durvalumab monotherapy did not. @ascocancer.bsky.social #RCC #kcsm #oncology Read more: www.onclive.com/view/adjuvan...

100%. Beyond "listening" to patient perspectives (often too late to effect change). Calls for the patient voice to be fully integrated into systems, governance structures. #patientengagement #ppi

Lawrence (Larry) Mróz@drmroz.bsky.social · 2mo ago

From patient voice to patient partnership: closing the implementation gap in healthcare becarispublishing.com/doi/pdf/10.5...

Today, May 20, 2026 is #internationalclinicaltrialsday. Joining patient advocate colleagues from @ikccorg.bsky.social virtually to represent the Patient Advisory Board of the CARE1 #clinicaltrial for 1st line mrcc. Recruiting in many centres across Europe. #kidneycancer @care1project.bsky.social

Great to see the @ikccorg.bsky.social Global Patient Survey data dissected to explore patient experience gaps in Canada, Mexico, and the US. This poster reveals concern over kidney function and yet lack of evidence-based information of how to best manage. #kidneycancer #patientexperience #AUA26

International Kidney Cancer Coalition@ikccorg.bsky.social · 3mo ago

During this AUA event, he presented a poster titled "Kidney Function Issues and Related Emotional Concerns Among Patients with Kidney Cancer Across North America: Findings from the IKCC Global Patient Survey." #AUA26 (2/2)

The #WorldKidneyCancerDay website is now live! www.worldkidneycancerday.org (1/2)

Abstract looks good for #kidneycancer patients. @theaacr.bsky.social @elizsmckenna.bsky.social Any way for patient advocates to access please?

Elizabeth McKenna@elizsmckenna.bsky.social · 3mo ago

Now online in Cancer Discovery @aacrjournals.bsky.social: [18F]RCCB6 PET/CT in Diagnosing ccRCC: A Prospective Comparison Study with [18F]FDG PET/CT and Conventional Imaging - by Qianyun Wu, Shuxian An, Arturo Chiti, Gang Huang, Jianjun Liu, Weijun Wei, ad colleagues doi.org/10.1158/2159...

Done! #cansky #oncsky #immunotherapy #cancer

Deb Collyar@deborahcollyar.bsky.social · 3mo ago

#cansky, please spread the word to #cancer #patients! We need lots of patients to tell us what's happening so we can do something about it!