Kidney Cancer Scotland Patient & Carer Survey
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Kidney Cancer Counselling Service
Kidney Cancer UK and Kidney Cancer Scotland provide the UK's first, free, dedicated Kidney Cancer Counselling Service.
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Check the dates for our nine free to attend, Living With Kidney Cancer days 2019.
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Why Do I Volunteer
By Emma Clark
I have chosen to volunteer with Kidney Cancer Scotland for several reasons.I believe volunteering reflects who you are and what you stand for. You volunteer with a specific group, charity, or organisation because you are passionate about what they stand for, you want to help, and you want to make a difference. That is why I volunteer. I want my words and my actions to help someone, even if it is just one person.
I volunteer with Kidney Cancer Scotland as a Community Champion; more so in the social media aspect of it. I write (and will continue writing for many years to come) blog posts that detail how we can respond to grief, how to deal with kidney cancer, and speaking to children about cancer. After my dad passed away from kidney cancer, and as I got older, I wanted to volunteer with a charity that I felt I could have used at the time he was ill. I want to pay it forward.
The mission of Kidney Cancer Scotland is something I am incredibly passionate about and proud to be a part of. The charity aims to assist both locally and nationally in their cause to raise awareness of kidney cancer and its symptoms. For a cancer that has limited visible symptoms, which often appear unrelated when one thinks of the ‘typical’ symptoms you would expect from cancer, raising awareness has the power to massively impact early diagnoses.I am so incredibly proud of the work this charity does, and I hope that in our quest to help those suffering with kidney cancer, the work volunteers do helps to raise awareness of this disease.
SMC Recommend nivolumab + ipilimumab for 1st line Rcc
By: Maureen Johnson – RGN, BSc (hons) Physiology
Kidney Cancer Scotland and Northern Ireland Health ProfessionalKidney Cancer Scotland are delighted with the SMC’s decision this week to recommend the use of Opdivo® (nivolumab) plus Yervoy® (ipilimumab) for first line treatment of patients with advanced kidney cancer who have risk of progression. The patient group submission was the first task of our new health professional, Mo Johnson and she also represented the group at the discussion meeting. We are thankful to those patients who gave us their time to tell us more about how their condition affected them and what this new treatment would mean to them.
To have this immunotherapy available to this group of patients is a massive step forward in treating those with progressive disease as it has been shown to halt growth of the disease and help people live longer in some patients when compared to the current treatments. It’s exciting for us to know these advances are now available and we are grateful to the SMC committee for considering the needs of our patient group.
This is the news story:
Bristol-Myers Squibb has announced that the Scottish Medicines Consortium (SMC) has decided to fund the combination of
Opdivo® (nivolumab) plus Yervoy® (ipilimumab) for use within NHS Scotland as a first-line treatment option for an advanced form of the most common type of kidney cancer, renal cell carcinoma (RCC), specifically in previously-untreated patients who are considered of intermediate- and poor-prognostic risk.
This recommendation signifies an important landmark in the treatment landscape, representing the first approval of an Immuno-Oncology (I-O) combination therapy for first-line patients with this type of cancer in Scotland. I-O works by stimulating the body’s immune system to recognise and eliminate cancer cells.
In addition to the SMC decision announced today, the combination of nivolumab plus ipilimumab has recently been made available immediately for NHS patients in England via the Cancer Drugs Fund, and has also been approved for use in Wales and Northern Ireland.
“Having the combination of nivolumab and ipilimumab available is a step change in the treatment of advanced kidney cancer. It is great news to be able to treat our patients first-line with this immunotherapy combination, as it has been shown to help certain patients live longer and improve outcomes compared to a current standard of care”, said Dr Balaji Venugopal, Honorary Clinical Senior Lecturer, University of Glasgow.
The SMC recommendation is based on data from the Phase III CheckMate 214 study of 1096 patients, which was stopped early after a planned interim analysis showed that the combination of nivolumab and ipilimumab demonstrated superior overall survival compared to sunitinib, a current standard of care. The co-primary outcome measures were overall survival, objective response rate and progression free survival in IMDC intermediate- and poor- prognostic risk patients:
- The combination of nivolumab (3mg/kg) plus low-dose ipilimumab (1mg/kg) demonstrated a significant improvement in overall survival, with a 37% decreased risk of death in intermediate- and poor-prognostic risk patients (n=425), compared to a current standard of care, sunitinib (n=422) (HR 0.63; 99.8% CI: 0.44 to 0.89; p<0.001). The overall survival benefit was observed regardless of PD-L1 expression level. The median overall survival was not yet reached at the point of analysis (95% CI: 28.2 to not estimable [NE]), compared to 26.0 months for patients treated with sunitinib (HR 0.63; 95% CI: 22.1 to NE; p<0.001)
- The objective response rate was 42% (95% CI: 37 to 47) in the nivolumab plus ipilimumab arm, versus 27% (95% CI: 22 to 31) in the sunitinib arm (p<0.001). The complete response rate was 9% (n=40) in the nivolumab plus ipilimumab arm, versus 1% (n=5) in the sunitinib arm
- The median progression-free survival was 11.6 months (95% CI: 8.7 to 15.5) and 8.4 months (95% CI: 7.0 to 10.8) respectively (HR 0.82; 99.1% CI: 0.64 to 1.05; p=0.03; not significant per the prespecified 0.009 threshold)
- The combination therapy was associated with numerically fewer overall Grade 3 or 4 treatment-related adverse events compared to sunitinib (46% [n=250] versus 63% [n=335] respectively). The most common adverse events (>20%) in the combination arm included fatigue, pruritus, diarrhoea, rash and nausea. The most common immune-related adverse events requiring steroid treatment were pneumonitis (59%), hepatitis (35%) and nephritis and renal dysfunction (27%).
Read full article on hospitalhealthcare.com HERE
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Why do I volunteer?
By Emma Clark
I have chosen to volunteer with Kidney Cancer Scotland for several reasons.
I believe volunteering reflects who you are and what you stand for. You volunteer with a specific group, charity, or organisation because you are passionate about what they stand for, you want to help, and you want to make a difference. That is why I volunteer. I want my words and my actions to help someone, even if it is just one person.
I volunteer with KCS as a Community Champion; more so in the social media aspect of it. I write (and will continue writing for many years to come) blog posts that detail how we can respond to grief, how to deal with kidney cancer, and speaking to children about cancer. After my dad passed away from kidney cancer, and as I got older, I wanted to volunteer with a charity that I felt I could have used at the time he was ill. I want to pay it forward.
The mission of KCS is something I am incredibly passionate about and proud to be a part of. The charity aims to assist both locally and nationally in their cause to raise awareness of kidney cancer and its symptoms. For a cancer that has limited visible symptoms, which often appear unrelated when one thinks of the ‘typical’ symptoms you would expect from cancer, raising awareness has the power to massively impact early diagnoses.
I am so incredibly proud of the work this charity does, and I hope that in our quest to help those suffering with kidney cancer, the work volunteers do helps to raise awareness of this disease.
Begg and Co. conquer Goatfell
The date? 6th of April. The challenge? To climb the highest peak on the Isle of Arran. The team? Unstoppable.
On a grey, misty day in April, a team of fabulous fundraisers from Alex Begg and Co. took to the slopes of Goatfell to raise money for Kidney Cancer Scotland. The team took on this mammoth challenge in aid of their Assistant Manager, Mike Cass, who has advanced kidney cancer.Ross Mack, the organiser, said this about Mike, ‘After everything he has been through, he remains happy and full of enthusiasm every day. He also inspires many others; with his attitude to ‘strive, work hard and do better’. This is a constant and reassuring message to us all, to tackle everything that comes your way, building a more positive outcome and bettering yourself.’
After many hours of walking, every member of the team had conquered Goatfell and have raised an incredible £5000!Ross and Hubert have shared their experience of the climb, ‘We did it we all make it to the top, although it was not easy. It was well worth it to see the view and to help my Assistant Manager reach his goal. To raise such an amazing amount and to raise awareness to a lot of people who had no idea about this Cancer is just amazing.
We would like to thank everyone for there support and kind donations without such generosity we would not have raised so much thank you again.’
Everyone at Kidney Cancer Scotland would like to echo Ross’ thanks to everyone who donated and to the team themselves for completing this immense challenge in aid of the charity. The effort put in by every single person is huge and we cannot thank them enough for helping raise awareness and allowing us to continue our valuable work across Scotland.
NICE: Shared decision making
Author: Susanna Smith; BSc (Hons) Nursing and MSc Public Health
Kidney Cancer UK Health ProfessionalI recently had the privilege of attending the N
ICE (national institute of care excellence) conference, Transforming care in Manchester, being the recipient of a bursary to attend. This conference celebrated 20 years of the organisation ‘Improving health and social care through evidence-based guidance’.Dr Phil Hammond (doctor, journalist, broadcaster, campaigner, comedian and most famously from ‘Trust me I’m a
doctor’) opened the conference by defining health as; “The freedom to live a life that you value and also value others. Our health is not the absence of disease but about our quality of life and the quality of the relationship we have.”
The conference was split into different sessions all with a specific focus, but a common theme that care and decisions about people’s health need to be shared. Each meeting had a patient/lay member describing their lived experience. In the session, ‘Reliable evidence?:roles of real-world data’, patients evidence and randomised trials in judging treatment effectiveness, Emily Lam who is a lay member (patient) of the NICE technology appraisal committee (this is where decisions are made about licencing medications), talked very openly about her multiple health problems and how
through her life she has not always been given the opportunity or choice to be involved in what happens to her. She has also been frustrated that doctors have not seen her as an individual with multiple illnesses; illnesses that can interact. She suggested that the medical profession need to consider in every decision made about her health that she is not just a specific condition, but a unique person. This has motivated her to be part of the change in how health decisions are made.
Another theme that shone through in the day is the idea of balance and that, yes we need medicine but we also need early diagnosis of disease and screening programmes, intervention in lifestyle factors and a reduction in health and social inequalities.Genetics was hot topic of the conference and there was much debate about how useful genetics can be. A lot of work is currently being done into cancer susceptibility (screening) using Genomics and also in molecular oncology, including profiling tumours so we can use drugs that target specific pathways.
Overall the conference focused on shared decision making and how important involvement of patients and their family’s are in decisions about health and also in the bigger picture of how our health care system. That decisions need to made not about someone but jointly with that person and if they feel unable to make the best decision to equip them with the information.
As you maybe aware as a patient organisation we want to help to improve outcomes and the quality of life for patients so they can live well with kidney cancer. We do this by being involved in appraisals for new medication for kidney cancer. Currently there are two consultations open and we need your views and experience with these medication. So, if you have been on avelumab with axtinib in the Javelin 100 or 101 clinical trial or pembrolizumab with axtinib on the keynote ( 426 or 427) trials and would like to share your experience which I can include in my submission, please contact me, Susanna Smith, at Kidney Cancer UK by emailing sms@kcuk.org.uk. All contributions need to be submitted to me by the end of June, 2019.
