Deb Maskens
@debmaskens.bsky.social
Cancer patient advocate. Canadian. Interested in patient involvement in cancer research, evidence-based advocacy, shared decision making globally. #cansky #oncsky #kcsm #kidneycancer #shareddecisionmaking
They are no joke. I have tried though:
I fell over a small blind dog. I was his seeing eye human... the one who was supposed to avoid the curbs and hazards. Can't make this up. No ice. Just stumbled.
Dog was fine...
I fell over a small blind dog. I was his seeing eye human... the one who was supposed to avoid the curbs and hazards. Can't make this up. No ice. Just stumbled.
Dog was fine...
November 4, 2025 at 2:46 PM
They are no joke. I have tried though:
I fell over a small blind dog. I was his seeing eye human... the one who was supposed to avoid the curbs and hazards. Can't make this up. No ice. Just stumbled.
Dog was fine...
I fell over a small blind dog. I was his seeing eye human... the one who was supposed to avoid the curbs and hazards. Can't make this up. No ice. Just stumbled.
Dog was fine...
All in for November as Fall Prevention Month! I tripped and fell 4 years ago, hit my head on sidewalk. Took me 6 months to drive again, $$$ in vision therapy, physiotherapy. Had no idea a simple fall could have such consequences!
#concussion
#concussion
November 4, 2025 at 2:40 PM
All in for November as Fall Prevention Month! I tripped and fell 4 years ago, hit my head on sidewalk. Took me 6 months to drive again, $$$ in vision therapy, physiotherapy. Had no idea a simple fall could have such consequences!
#concussion
#concussion
Reposted by Deb Maskens
IKCC kindly invites you to complete the survey by Friday, 7 November 2025. It takes less than three minutes. forms.office.com/Pages/Respon... @GlobalCCN_org (2/2)
November 3, 2025 at 3:11 PM
IKCC kindly invites you to complete the survey by Friday, 7 November 2025. It takes less than three minutes. forms.office.com/Pages/Respon... @GlobalCCN_org (2/2)
So here's a response: use the postage-paid envelope (tape to their large envelope) and mail the whole thing back...at their expense.
If enough people did this, maybe, just maybe they would stop? Otherwise it all ends up in the landfill. Agree/disagree?
If enough people did this, maybe, just maybe they would stop? Otherwise it all ends up in the landfill. Agree/disagree?
October 23, 2025 at 9:38 PM
So here's a response: use the postage-paid envelope (tape to their large envelope) and mail the whole thing back...at their expense.
If enough people did this, maybe, just maybe they would stop? Otherwise it all ends up in the landfill. Agree/disagree?
If enough people did this, maybe, just maybe they would stop? Otherwise it all ends up in the landfill. Agree/disagree?
100% agree. And would add that helping a fellow patient is far more rewarding, more deeply meaningful than any presentation, any publication. (And yet those things are necessary to improve care for all patients, including the ones we never meet...) #cansky
October 17, 2025 at 1:15 PM
100% agree. And would add that helping a fellow patient is far more rewarding, more deeply meaningful than any presentation, any publication. (And yet those things are necessary to improve care for all patients, including the ones we never meet...) #cansky
Really look forward to further exploration of "intentional non-adherence" within the context of quality of life goals and RWE with oral therapies. Think we all accept that current HRQoL tools/data are not telling the full picture.
#kidneycancer
#kidneycancer
September 22, 2025 at 7:41 PM
Really look forward to further exploration of "intentional non-adherence" within the context of quality of life goals and RWE with oral therapies. Think we all accept that current HRQoL tools/data are not telling the full picture.
#kidneycancer
#kidneycancer
Beautiful post @lauraesfeller.bsky.social -- "hope when I needed it most".
100% sure you make him proud every day. Thank you for your advocacy and good work done in his memory to give others that spark of hope when they need it most. #kidneycancer #clinicaltrials
100% sure you make him proud every day. Thank you for your advocacy and good work done in his memory to give others that spark of hope when they need it most. #kidneycancer #clinicaltrials
September 20, 2025 at 9:59 PM
Beautiful post @lauraesfeller.bsky.social -- "hope when I needed it most".
100% sure you make him proud every day. Thank you for your advocacy and good work done in his memory to give others that spark of hope when they need it most. #kidneycancer #clinicaltrials
100% sure you make him proud every day. Thank you for your advocacy and good work done in his memory to give others that spark of hope when they need it most. #kidneycancer #clinicaltrials
Great model here of an international Patient Advisory Board for this Phase 3 #clinicaltrial for 1st line #kidneycancer. Important focus on improving HRQoL measures so that items are meaningful and relevant in era of immunotherapy. Great collaboration!
#patientengagement
#patientengagement
September 19, 2025 at 3:23 PM
Great model here of an international Patient Advisory Board for this Phase 3 #clinicaltrial for 1st line #kidneycancer. Important focus on improving HRQoL measures so that items are meaningful and relevant in era of immunotherapy. Great collaboration!
#patientengagement
#patientengagement
Agree with that 3-week rule. And even then, for something new, I'd visit my GP first to rule out common things first. The pain in my arm that I was SURE was a bone met... resolved with physiotherapy etc.
#survivorship #cansky
#survivorship #cansky
September 10, 2025 at 4:20 PM
Agree with that 3-week rule. And even then, for something new, I'd visit my GP first to rule out common things first. The pain in my arm that I was SURE was a bone met... resolved with physiotherapy etc.
#survivorship #cansky
#survivorship #cansky
And we complain about parking costs. Approx $20 USD for a long day in the cancer centre...
September 2, 2025 at 9:32 PM
And we complain about parking costs. Approx $20 USD for a long day in the cancer centre...
Sadly, the "empty their life savings" part tells me what country you live in... In many other countries, the blow is every bit as emotional, but not financially devastating. Here in Canada, I pay for parking (only). #kidneycancer
September 2, 2025 at 9:29 PM
Sadly, the "empty their life savings" part tells me what country you live in... In many other countries, the blow is every bit as emotional, but not financially devastating. Here in Canada, I pay for parking (only). #kidneycancer
Will be interesting to plot the 10-year trends with next global #kidneycancer survey. In the meantime, advocates and pt orgs can encourage pts to know their subtype/histology.
And there is no subtype called "non-clear cell rcc". Please.
And there is no subtype called "non-clear cell rcc". Please.
September 2, 2025 at 5:05 PM
Will be interesting to plot the 10-year trends with next global #kidneycancer survey. In the meantime, advocates and pt orgs can encourage pts to know their subtype/histology.
And there is no subtype called "non-clear cell rcc". Please.
And there is no subtype called "non-clear cell rcc". Please.
Fantastic news. Now file that CT report in your digital archives. Many, many more to come over the years ahead.
I'm hopeful that one day soon we'll have a blood-based biomarker to detect possible recurrence. For now, that whirring CT machine is your best friend. #survivorship
#kidneycancer
I'm hopeful that one day soon we'll have a blood-based biomarker to detect possible recurrence. For now, that whirring CT machine is your best friend. #survivorship
#kidneycancer
August 29, 2025 at 5:19 PM
Fantastic news. Now file that CT report in your digital archives. Many, many more to come over the years ahead.
I'm hopeful that one day soon we'll have a blood-based biomarker to detect possible recurrence. For now, that whirring CT machine is your best friend. #survivorship
#kidneycancer
I'm hopeful that one day soon we'll have a blood-based biomarker to detect possible recurrence. For now, that whirring CT machine is your best friend. #survivorship
#kidneycancer
Thanks for doing this @sadlersnaps.bsky.social
Important message that not every #kidneycancer patient presents in the usual age 55+ demographic. And younger patients face more barriers, consistently per @ikccorg global surveys
Important message that not every #kidneycancer patient presents in the usual age 55+ demographic. And younger patients face more barriers, consistently per @ikccorg global surveys
August 24, 2025 at 9:46 PM
Thanks for doing this @sadlersnaps.bsky.social
Important message that not every #kidneycancer patient presents in the usual age 55+ demographic. And younger patients face more barriers, consistently per @ikccorg global surveys
Important message that not every #kidneycancer patient presents in the usual age 55+ demographic. And younger patients face more barriers, consistently per @ikccorg global surveys
Glad you went to a "center of excellence" for younger-onset RCC. I was 14 (fourteen!) when 1st diagnosed with rare papillary rcc, huge tumor, radical nephrectomy. Still here thanks to amazing, expert care here in Canada, plus NIH #clinicaltrial in yours. #grateful #kidneycancer
August 13, 2025 at 12:19 PM
Glad you went to a "center of excellence" for younger-onset RCC. I was 14 (fourteen!) when 1st diagnosed with rare papillary rcc, huge tumor, radical nephrectomy. Still here thanks to amazing, expert care here in Canada, plus NIH #clinicaltrial in yours. #grateful #kidneycancer
Thank you. I appreciated the gift article. A good read!
August 8, 2025 at 11:53 AM
Thank you. I appreciated the gift article. A good read!
Love this thread! Thank you.
Adding that the multiple contradictions also apply to our internal perspectives - we can hold feelings of hope and despair at the same time. It's a complicated weave of two powerful threads... #cansky #survivorship
Adding that the multiple contradictions also apply to our internal perspectives - we can hold feelings of hope and despair at the same time. It's a complicated weave of two powerful threads... #cansky #survivorship
August 8, 2025 at 11:41 AM
Love this thread! Thank you.
Adding that the multiple contradictions also apply to our internal perspectives - we can hold feelings of hope and despair at the same time. It's a complicated weave of two powerful threads... #cansky #survivorship
Adding that the multiple contradictions also apply to our internal perspectives - we can hold feelings of hope and despair at the same time. It's a complicated weave of two powerful threads... #cansky #survivorship