Category Archives: info

New treatment for advanced bowel cancer

NICE recommends new combination treatment for advanced bowel cancer

Bowel Cancer UK
Friday 20 November 2020

Today the National Institute for Heath and Care Excellence (NICE) announce their final recommendation for a new treatment combination for people diagnosed with a rare form of bowel cancer. NICE draft guidance initially refused to recommend the treatment due to its cost effectiveness.

The drugs – BRAFTOVI® (encorafenib) in combination with Erbitux® (cetuximab) – will be available within three months on the NHS for adults with a particular form of colorectal cancer, known as BRAFV600E mutant metastatic colorectal cancer (mCRC), living in England and Wales.

Researchers found the combination of the two drugs significantly improved the amount of time patients lived after receiving the treatment, with a median overall survival rate (the amount of time patients lived after receiving the treatment) increasing from 5.9 months to 9.3 months compared to other treatments. It also reduced the risk of death by 39%, compared to the control arm of the trial.

In June 2020, the combination took a major step forward when it was approved by the European Commission. However NICE published draft guidance in September not recommending the combination of drugs because of its cost effectiveness, but after reviewing feedback from the clinical community, charities like us, and patients who have been affected by the decision, they are now recommending the drug to be used on the NHS.

Genevieve Edwards, Chief Executive of Bowel Cancer UK, said: “Approximately one in ten people diagnosed with advanced bowel cancer have a BRAFV600E mutation, and their treatment options are currently extremely limited. We worked closely with clinicians to submit evidence to the NICE consultation on the benefits of the combined therapy, and are really pleased that today’s announcement offers new hope to patients.”

How To Zoom

How to sign up to Zoom and respond to an invitation to join a meeting.

This page may change and evolve as a result of feedback and questions from members, there are two parts to this:-

How to Register a Zoom Account for the first time (sorry about the introduction!)

How to Respond to a Zoom Invitation that you might receive by email

These are both Youtube videos, just click on the link and give them a try!

Living With & Beyond Bowel Cancer – Some Useful Links

Here’s part of a message form Rosie Sadler from the Brighter Outlook Team – Albion in the Community. It followed on from a meeting where attendess were able to share their expert knowledge and tips and advice on living well with and beyond bowel cancer, and/or a stoma, and the effects of treatments.

Here’s some links and contact information for points of contact on what was discussed.


C-Side Support Group

Support group for anyone affected by colorectal cancer. For more information on the C-side support group visit their website http://c-sidebrighton.org/

If you would like to join their next meet up, either on zoom or when it restarts (at the Horizon Centre), contact either:
Denise Savage sdsavage16@gmail.com
Or Steve Tedman (Chair of C-Side) Steve.tedman@sky.com


Contact details for Stoma Nurses or Colorectal Nurses if you have any problems or questions, they’re always happy to help J

STOMA CARE DEPARTMENT  bsu-tr.stomacaredepartment@nhs.net

LowerGIMacmillanRSCH bsuh.lower.gi.macmillanrsch@nhs.net


Recipe books

“Every Mouthful Counts” Recipe book by Mhairi Donald (Macmillan Dietician at Sussex Cancer Centre) – https://sussex-cancer-centre.org.uk/index.php/cookbooks/  

“Wizz it up” written for cancer patients who are having difficulty eating and swallowing – http://sussex-cancer-centre.org.uk/index.php/439-2/   

Macmillan recipes for people affected by cancer – https://be.macmillan.org.uk/Downloads/CancerInformation/LivingWithAndAfterCancer/MAC17345RecipesLowresPDF20181220.pdf

Or you can buy it here: https://www.amazon.co.uk/Recipes-affected-MacMillans-Information-Development/dp/B00XJTWWV4

or https://be.macmillan.org.uk/be/p-22480-recipes-for-people-affected-by-cancer.aspx

There are also eating well tips and other useful information on the following websites:

Bowel Cancer UK: https://www.bowelcanceruk.org.uk/about-bowel-cancer/our-publications/eating-well/
  
Colostomy UK: https://www.colostomyuk.org/information/diet/


Cookery classes at Horizon Centre

Eat Well Feel Better cookery workshops are great, run by experts, and you get to eat the food you cook after! – https://www.macmillan.org.uk/cancer-information-and-support/get-help/centres/macmillan-horizon-centre  


 Bowel Cancer Recovery Toolkit

A fantastic book by Sarah Russell (clinical exercise specialist) – https://www.amazon.co.uk/Bowel-Cancer-Recovery-Toolkit-lifestyle/dp/178161136X

Sarah Russell also did a live Q+A session with 5K Your Way and definitely worth a listen/watch here – https://www.youtube.com/watch?v=wnUv_cJ0wu0&feature=emb_title


Tai Chi was discussed and recommend as a great way to improve balance

Tai Chi Fit over 50 – Balance exercises David-Dorian Ross – https://www.amazon.co.uk/Tai-Chi-Fit-David-Dorian-Bestseller/dp/B01N6L9TIQ   

Here is a video too: https://www.youtube.com/watch?v=fVxlXrRroRI

The Brighton Buddhist Centre also sometimes run Tai Chi classes


In Conversation with Macmillan

When is the event?
Wednesday 25 November, 6-7pm

Background to the Event
During the pandemic, Macmillan has discovered from our social media shout-outs in September (Instagram, Twitter and Facebook), that 94% of people want to hear from a case study, 94% want to hear about how to manage side effects, 95% want to hear about emotional support and 91% about rights at work.

It is hoped that this event will connect people with cancer together and highlight some of the support that is available during the pandemic. It will provide an opportunity for people to hear from Macmillan professionals and other people living with cancer on themes around: treatment and care since the pandemic; signposting to Macmillan support; loneliness and isolation; rights at work; and some of the queries that may come up in the live chat.

What’s the Event Format?

6-6.30 pm Mandy, a person living with cancer, in conversation with Terri (Macmillan communications manager).  Broad discussion on themes.
6.30 – 7pm Presentations from a panel of colleagues across Macmillan, a Clinical Nurse Specialist and the Macmillan Cancer Information Support team. Broad themes will be: treatment and care since the pandemic, and the implications of the pandemic on loneliness and isolation, signposting to Macmillan support, works assessments and rights at work.

During the event, people will be able to submit questions via a live stream.

After the event, the video will still be available to view on Facebook and YouTube and there will be a shareable link to the recording.

Please find the link below to the Facebook page.

https://www.facebook.com/macmillancancer/photos/-mark-it-in-your-diary-and-set-your-alarm-our-in-conversation-with-macmillan-eve/10158591812647199/

Mark Witcomb
Macmillan Engagement Lead – Surrey and Sussex
Telephone: 07458 056996
Macmillan Cancer Support 
3 Fawcett Street, York, YO10 4AH

For information, support or just someone to talk to,
call 0808 808 00 00 or visit macmillan.org.uk
Tailored resources for people with cancer concerned about the coronavirus are available at macmillan.org.uk/coronavirus
Further resources to support Macmillan professionals are available on Learnzone

The Forgotten “C” Campaign – A Message From Macmillan

Cancer care is at a tipping point. During the first wave of the pandemic, thousands of vital appointments, surgeries and treatments were cancelled. Our new report, which launches in the media on Thursday 29 October, reveals the devastating impact this has had for many people living with cancer.

We are extremely concerned to see this happening again in the ‘second wave’, with staff being redeployed and intensive care wards filling up in the worst affected areas.

That’s why we’re asking everyone to get behind the Forgotten ‘C’ campaign, as we call for UK Governments to ring fence cancer services to prevent the backlog from growing. 
This is the most worrying time in recent history to get a cancer diagnosis. Now more than ever, people living with cancer must be able to get the right treatment and care, with the right support, at the right time. 

Take action, and show that you see the forgotten ‘C’

  1. Sign and share our open letter, calling on the decision makers for health in England, Wales, Scotland and Northern Ireland to take urgent, radical action now to ring-fence services and prevent the backlog in cancer care and treatment from growing.
  1. Add our frame to your profile picture on Facebook, to help Macmillan make sure the needs of people living with cancer aren’t forgotten.
  1. Visit our website to choose a poster to print and display in your front window, showing others you see the forgotten ‘C’.
  1. Read our new report ‘The Forgotten ‘C’? The impact of Covid-19 on cancer services’, and media coverage to learn more about how the cancer backlog has impacted so many people living with cancer, and why urgent action is needed to prevent the backlog. 

Message from the BSUH Lower GI Macmillan Team

“ Hello all, I’m glad to share a brief update from RSCH.  We are all now back in our ‘normal’ jobs after a brief period of redeployment during the acute phase of the Covid pandemic earlier this year.

It has been fabulous to welcome two new team members recently, Leanne Tory is our new junior sister, she is working with the team three days/week. Leanne has a wide range of experience including GI surgery and cancer care. Molly Hughes is our new part time Macmillan Support worker, she will be supporting the team two days/week, she is also currently completing her Masters and has a particularly interest in radiotherapy.

The lower GI Macmillan team is still short staffed due to vacancy and maternity leave. We are re-advertising for a band 6, junior sister/charge nurse role and hope we will be able to appoint at the interview late November. The post holder will work three days a week. We look forward to welcoming Zoe our Support worker back from maternity leave in March next year.

In order to ensure people at home have support the team is working differently and have been focussing support on the helpline, to respond as quickly as possible to enquires and help deal with issues and concerns. Due to the reduced staffing levels we have not been able to run our nurse-led clinics or support consultants in clinic but hope to restart these vital services as soon as we can once the team is fully staffed again.

Some tests both in diagnostic phase and follow up have been delayed by Covid but the teams involved are doing their utmost to get investigations done in a timely manner, if you experience any delays please do not hesitate to contact us or if it is a follow up test, contact Claire Theobald and do feedback to the Patient Advice and Liaison Service team about how the delays have left you feeling (01273 64511 or 01273 64973 or email at bsuh.pals@nhs.net

The Macmillan Horizon Centre is slowly reintroducing services so it’s worth keeping an eye on the web site every few weeks to make sure you don’t miss out on any services

https://www.macmillan.org.uk/cancer-information-and-support/get-help/centres/macmillan-horizon-centre

We wish you all well and hope you and those important to you are keeping well during these ‘unusual’ times”

from Gill & The Team

Holistic Health Assessments

Click within the picture on the left to view this leaflet …


A Holistic Needs Assessment is a vital component part to a patient’s Cancer Recovery Package.

C-Side is proud to have lent its support to our CNS team as they have helped develop and deliver the package. Click here to view a previous posting.