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Issue 13 | July 2021

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Introduction

Welcome to the summer issue. If you were not fortunate enough to book a Cornish holiday a year in advance then take some time now to delve into our thirteenth edition! Here we aim to provide healthcare professionals with updates on our work at the UKMF as well as relevant myeloma information of interest. 

As part of our new strategy, we are excited to introduce the UKMF Pharmacy Group, led by Andrea Preston. The aim of the Group will be to promote excellence in the pharmaceutical care of patients with myeloma.  Andrea leads the clinical pharmacy service to haematology and BMT at University Hospitals Bristol & Weston NHS Foundation Trust. To learn more about the Pharmacy Group and how to get involved read on.

Also in this issue there are links to two recently published papers on 'Response to first vaccination against SARS-CoV-2 in patients with multiple myeloma' and 'COVID symptoms, testing, shielding impact on patient reported outcomes and early vaccine responses in individuals with multiple myeloma.'

Later this summer we will be announcing how to apply for bursaries to attend ASH, albeit virtually. There will be 5 bursaries up for grabs and we would strongly urge you to encourage your nurse and pharmacist colleagues to apply. 

We will be launching our first hybrid Autumn Day meeting on the 11th November 2021. We have a packed programme for you with high profile international speakers. The theme will be 'Sequencing Therapy and Personalised Medicine in Myeloma' and The Michael Morley lecture will be given by Dr Francesca Gay from the University of Torino on 'My current approach to sequencing therapy in myeloma and how this can be refined with personalised therapy'. More details of our other guest speakers and how to register can be found in the meeting section below.

Behind the scenes, the Executive have been hard at work revising our strategy and communications. Your view as members and stakeholders is vital and we will be sharing these proposed changes with you in due course and would welcome your feedback. Remember, contacting us is easy. Either email Wendy, our administrator, or Tweet us, using @UKmyelomaforum. 

Finally, on behalf of the Executive, we would like to congratulate our very own Sarah Henshaw who was recently awarded the World Wide Nurse Award at COMY2021 Honoree awards.

Enjoy your summer and hope you manage to get a well earned break.

With best wishes

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UKMF Communications Lead

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COVID-19

Following two waves of the pandemic, all myeloma patients have been offered vaccination. Two papers published recently have evaluated immune response and patient experiences during the pandemic. This data sets the scene for myeloma care over the next 6 months. More mature data and additional data from other groups are expected which will help guide clinical management of patients. Interim COVID chemotherapy guideline continues to be operational for the foreseeable period.

Response to first vaccination against SARS-CoV-2 in patients with multiple myeloma

COVID symptoms, testing, shielding impact on patient reported outcomes and early vaccine responses in individuals with multiple myeloma

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Membership

Membership is free and has a number of benefits such as regular updates regarding our activities including upcoming clinical trials, new guidelines, information regarding educational meetings, meeting reports and progress in access to new drugs. By being a UKMF member, this gives you an opportunity to be part of the Executive and to be able to vote for Executive members. To access the membership form from our website, please click here.

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Travel Bursaries

Members are eligible to apply for a number of generous bursaries towards registration fees for international meetings.

We expect to let you know more about this in early autumn, as we offering 5 bursaries towards virtual registration to ASH 2021. We are particularly encouraging Nurses and Pharmacists to also apply. Details to the membership will follow, in the meantime, feel free to contact Wendy if you have any queries. 

Congratulations to the winners of the EHA virtual bursaries, Dr. Samir Asher and Dr. Aisha Jibril. These are joint awards with some of our Platinum sponsors, Sanofi and GSK. The bursaries covered the registration fee.  

Sanofi – Dr Samir Asher is a Clinical Research Fellow at 
NIHR UCLH Clinical Research Facility.

GSK - Aisha Jibril is a Post-graduate researcher (PhD)
at Norwich Medical School.

The winners have kindly written a review of EHA 21, which can be found here Review as well as in the conference report section our website.
 

UKMF Education

Our educational activities with emphasis on science and clinical practice run twice a year.

Spring Day Meeting  - 17th March 2021
We were delighted that the virtual Spring Day was so well attended and we have received excellent feedback from those who attended. Thank you to Dr John Ashcroft and Prof. Guy Pratt for chairing the day. The programme and slide decks can be found on our website. 
The theme was 'Impact of COVID on MM Management' and featured the Michael Morley lecture, presented by Dr Maheshi Ramasamy from the University of Oxford on 'The Oxford Astra Zeneca vaccine – developing a global vaccine against COVID-19'. 

Autumn Day Meeting - 11th November 2021
We are looking forward to welcoming you back to the first hybrid Autumn Day which will take place on on 11th November 2021 at the Cavendish Conference Centre and will also be accessed virtually.  Dr Ceri Bygrave and Dr Sarah Lawless will jointly Chair this meeting. The Michael Morley lecture will be given by Dr Francesca Gay from the University of Torino in Italy on 'My current approach to sequencing therapy in myeloma and how this can be refined with personalised therapy'. Other international speakers include; Prof Marc Raab from Heidelberg University, Dr Shaji Kumar from the Mayo Clinic in Rochester and Prof Sagar Lonial from Emory University Hospital.

If you would like to register your interest for this meeting, please contact 
Derry@collaborativeconferences.co.uk.

BSH Annual Scientific meeting - April 2021
In case you missed it, the BSH Annual Scientific meeting went ahead virtually. 
The joint UKMF Chairs were Dr John Ashcroft and Professor Gordon Cook. Presentations were given by  Alessandra Larocca on 'The clinical assessments of frailty in myeloma', Jonathan Kaufman on 'Biomarkers and lab assessments of frailty' and Prof Gordon Cook on 'How do we design clinical trials and affect clinical practice? 
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Date for your diary: 
Thursday 11th November 2021, Autumn Day + AGM
Wednesday 16th  March 2022, Spring Day

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Other Educational Events

UKMRA-MUK-CARP webinar series: Webinar 4:
Early career experiences of clinical trials research – clinical and academic perspectives’
Date: Thursday 22nd July 14.00-15.00
Register place for free on Eventbrite (make sure correct date is selected from the drop down list): https://www.eventbrite.co.uk/e/ukmra-muk-carp-webinar-series-tickets-161069361797
 
The HMDS Annual Haematopathology Update Day
Wednesday 8th September 2021
Virtual Event
For further details or to register your interest please email alex@hartleytaylor.co.uk
 
South West Myeloma Group
Thursday 23rd September 2021
This meeting will be held as a hybrid event with the opportunity to attend in person.  Live streaming will be offered for those unable to travel to Taunton.
For further information please email julie@hartleytaylor.co.uk
 
Current Thinking in Haematological Malignancies 
Tuesday 16th November 2021
For further details or to register your interest please email alex@collaborativeconferences.co.uk
 

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Advocacy

The UKMF members have continued to engage with the NICE technology appraisals both in newly diagnosed and relapsed myeloma. Members of the UKMF forum also help develop NICE clinical guidelines and more recently input into NHS England Algorithm. 

Please click here for an update on UKMF advocacy. It is absolutely vital that we remain engaged in discussions with NICE and other stakeholders to ensure best care is delivered to all of our patients across the country.

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Guidelines

The UKMF Guidelines Group remains active. Despite the recent difficulties caused by the Covid-19 pandemic, good progress has been made on the development of 2 new separate sets of guidelines on the management of both newly diagnosed and relapsed multiple myeloma. 
 
The newly diagnosed guidelines (Lead Author: Jonathan Sive) has now been published in the British Journal of Haematology and can be found on the BSH web site. A first full draft of the relapsed guidelines (Lead Author: Mathew Jenner) is near to completion. The writing group is now meeting fortnightly on MS Teams.  
 
In addition, writing groups have been set up with a view to producing Good Practice Papers (GPPs) on the diagnosis and management of both MGUS and MGRS. The MGUS writing group has now held 2 meetings, and the first drafts of individual sections have now been written. SS is currently putting these together into a 1st draft.  
 
There are plans to write a GPP on smouldering myeloma. A provisional writing group has been set up, and the 1st meeting is due to take place soon.
 

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Research

The UKMRA (also known as the NCRI Myeloma sub-group) is a collaborative group of UK health care professionals, scientists and key stakeholders that meet to further the advancement of research for multiple myeloma.
The first meeting of the year was held on Wednesday 12th May by MS Teams with 44 attendees!  This is an amazing number of motivated health care professionals coming together and demonstrates the level of commitment to myeloma research in the UK.   This was the first meeting with the new senior leadership team (SLT) in place: Rakesh Popat (Chair), Martin Kaiser (VC), Kwee Yong (Industry), Matthew Jenner (Governance), David Cairns (Trials Design), Holger Auner (Translational). 
The UKMRA is formalising its process for the approval of trials.  All trials must now be approved by the SLT to be portfolio adopted.  The SLT will meet 4 times a year and investigators will be invited to discuss trial concepts at this meeting.  The SLT will also monitor progress of studies and assign a senior investigator (Kwee Yong, Gordon Cook or Graham Jackson) as a mentor to reduce the risk of attrition. Gaps in the portfolio will be identified and working groups formed to address these.  The translational laboratories are being mapped and a virtual UK biobank is being explored. A new patient representative has been assigned by the NCRI and will join the next main group meeting. 
The highlight of the UKMRA is that the 2 front line trials Myeloma XIV, “Fitness” (CI: G Cook and G Jackson) and Myeloma XV, “Radar” (CI: K Yong and K Ramasamy) are now both open.  We strongly encourage patients to be enrolled into these studies.  The Fitness trial is investigating the role of prospective dose adjustments by frailty and the RADAR study assessing risk adapted, MRD driven treatment.  These are vital questions that need to be answered to progress the outcomes for our patients.  In addition, we’re proud to announce that the Cardamon and MUK9b trials were presented at ASCO and EHA as oral presentations. Congratulations to Kwee Yong and Martin Kaiser on this achievement.
The group discussed further trial concepts in development and highlighted areas of unmet need.  This is a rapidly developing area which we will update as we progress.   The ProMMise trial (Belantamab mafodotin combinations, CI: R Popat) is the first study to open through the UKMRA-Myeloma UK Concept and Access Program (CARP) and is scheduled to open in Autumn 2021.  DTP3 (small molecule inhibitor, CI: Holger Auner) and Mcarty (BCMA CAR-T cells, CI K Yong, PI L Lee)) are other trials in development that are planned to open by the end of 2021.   These smaller proof-of-concept studies highlights the level of innovation in the group.  2021 is looking to be an exciting year!

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Due to the pandemic plans for the nurse group have been on hold and unfortunately the group had been unable to start the qualitative study looking at the impact of the COVID pandemic on health care professionals working practice and patients quality of life.  However, Myeloma UK has done brilliant work in this field therefore, the group is going to audit health care professionals looking at what changes have happened during the pandemic that have been positive to the patient experience so please look out for a survey monkey coming out via Myeloma UK over the coming months.

The pandemic has been a challenging time within myeloma nursing as patients have had concerns about treatments, hospital attendance and coping with treatments in the new world of virtual consultations. It has been a difficult winter but we are starting to be able to clinically get back to some kind of new normal within our clinic settings. Many of our patients are now double vaccinated and are no longer shielding which has helped alleviate some of their fears, it has however been hard for them to get used to not shielding and living in this new normal. 

Nurses involved in myeloma care continue to find it challenging managing the support of patients remotely via virtual/telephone clinics. The complexities of offering psychological, social and pain and symptom management remotely have made us all review the way we manage this group of patients, however, the main priority continues to be patient safety and support as lockdown measures are starting to ease. 
 
The steering committee has met recently and we are now in a position where we would love Myeloma Clinical Nurse Specialists, Haematology Clinical Nurse Specialists, Myeloma and Haematology Research Nurses or any nurse who has an interest in Myeloma nursing care and improving quality of life for this group of patients. Expansion of the group will involve development of a list of nurses that the steering committee can approach to help with bigger projects.
so if you would like to get involved please can you contact Sarah Henshaw, Myeloma CNS at Nottingham University Hospitals at sarah.henshaw@nuh.nhs.uk . 
 
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Pharmacy

The UKMF Executive Board have recently welcomed the introduction of a UKMF Pharmacist Group.  The aim of the Group will be to promote excellence in the pharmaceutical care of patients with myeloma.  It will support education, development of guidelines and encourage cancer pharmacists to undertake high quality, audit and research (aligned with UKMF and UK MRA workplans).  They will aim to support standardisation of clinical pharmacy practice across the UK.   Initially they are aiming to focus on the use of DOACs as imid prophylaxis and the use of bile acid sequestrants for lenalidomide induced diarrhoea.

Andrea Preston is leading the development of the Group, which will officially launch at the UKMF Spring Day 2022.  Andrea leads the clinical pharmacy service to haematology and BMT at University Hospitals Bristol & Weston NHS Foundation Trust, where she also practices as an independent prescriber in myeloma and amyloidosis.  She is a member of the British Oncology Pharmacy Association's Audit & Research Committee, and has recently joined the Clinical Entrepreneur training programme, run by NHS England and NHS Improvement’s Innovation, Research and Life Sciences group.  

Andrea is currently reaching out to Cancer Specialist Pharmacists with a special interest in Myeloma to form the core steering group.  If interested, please contact Andrea at Andrea.Preston@nhs.net

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Myeloma UK

Myeloma UK funded research and research mailing list
Our research programme aims to drive scientific breakthrough into the cause and treatment of myeloma and related conditions to increase patient survival and improve patient experience. To inform UK researchers of our funding calls and research-specific activities, we are setting up a research mailing list.  If  
you are interested in joining this, please email us at research@myeloma.org.uk

Myeloma UK partners with GatewayC on myeloma module for primary care
As part of their continued work to reduce delays in myeloma diagnosis, Myeloma UK have collaborated with GatewayC on the refresh and relaunch of their myeloma learning module.  Gateway C is an online cancer education platform developed specifically for professionals working in primary care, to support clinical decision making around earlier and faster diagnosis and enable improved cancer outcomes.  This free-to-access, CPD-accredited module is available on the GatewayC platform and features Dr Neil Rabin, UKMF Chair Elect, discussing myeloma diagnosis

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UKMF · UKMF · Dept of Haematology, UCH · London, London NW1 2PJ · United Kingdom

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