spotlight – dr. lynda foltz at st paul’s hospital. lynda foltz at st paul’s hospital do...
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Fall 2016 Vol 1. No. 2
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We publish this newsletter quarterly, with information on what’s new in MPN care and research. Each issue we bring together MPN advances and news, and keep you up to date with the work of the Canadian MPN Group. Comments, ideas and suggestions can be sent to [email protected]
What kind of MPN patients do you see?
We accept referrals for all MPN patients, including essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). This includes patients who require a second opinion on diagnosis, require more complex management or who are interested in clinical trials.
The hematology team at SPH
The hematology team at SPH is made up of 7 hematologists, a research manager, research coordinator and a research assistant.
Spotlight – Dr. Lynda Foltz at St Paul’s Hospital
Do patients receive genetic testing?
Next generation sequencing is now available to eligible patients through the British Columbia Cancer Agency (BCCA) genetics laboratory. Testing is available on bone marrow aspirate samples for patients with ET or MF who are JAK2V617F negative and for JAK2V617F positive MF patients who are undergoing evaluation for stem cell transplantation.
What clinical trials do you have open?
Currently we have a trial open that is examining the safety of a novel drug called PRM-151 (NCT01981850) in patients with MF. The trial is also looking at whether the drug is able to
Newsletter
Every newsletter we highlight a leading centre for MPN care and research in Canada. Dr. Lynda Foltz is an MPN specialist at St Paul’s Hospital, University of British Columbia in Vancouver. Dr. Foltz tells us about her work at SPH.
Left to right: Dr. Khaled Ramadan,.Dr. Heather Leitch, Dr. Shannon Jackson, Dr. Hatoon Ezzat, Dr. Lynda Foltz, Dr. Chantal Leger, Dr. Camilla Ross
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Dr. Lynda Foltz... continued from page 1
Busque L, Porwit A, Day R, Olney HJ, Leber B, Éthier V, Sirhan S, Foltz L, Prchal J, Kamel-Reid S, Karsan A, Gupta V. Laboratory Investigation of Myeloproliferative Neoplasms (MPNs): Recommendations of the Canadian MPN Group. Am J Clin Pathol. 2016; 146(4):408-22
The Canadian MPN Group aims to improve patient care and further MPN research. Standardizing laboratory investigations for MPNs will increase consistency in patient care as well as provide a sound foundation for future clinical research. To this end, the members held a series of meetings to discuss recommendations for the diagnosis of MPNs. This article summarises the Group’s recommendations, proposed diagnostic algorithms and the background evidence upon which decisions were made.
Publications by the Canadian MPN Group
reverse bone marrow fibrosis in MF. The trial is suitable for intermediate-1 risk or higher patients that are not suitable candidates for ruxolitinib (for additional eligibility criteria see mpncanada.com/treatment-options/clinical-trials/)
What are your MPN research interests?
The SPH team is an active research group, and we have collaborations with a number of Canadian and international research groups. One of these is an international collaboration investigating ruxolitinib-associated anemia in which we are re-analyzing data from previous clinical trials. We have also initiated a collaboration with our colleagues at Vancouver General Hospital to review best clinical practice for prevention and management of thrombosis in patients with MPN.
MPN education for medical professionals
Participating in continuing medical education is a great opportunity to share knowledge and continue to learn about MPN. I travel to academic and community centers in BC and across Canada to speak to physicians about MPN and provide support and advice to colleagues by phone and email regarding the management of patients with MPN. Though the Canadian MPN group, we have published our perspectives on the diagnosis and treatment of MPN, which should serve as a helpful resource. Teaching medical students and residents about MPN is also very important. Trainees of all levels work with us in our clinics and I am always looking for opportunities to teach more about MPN.
ReferralsReferrals accepted from physicians and advanced practice nurses
St Paul’s Hospital (Providence Hematology)490-1144 Burrard StreetVancouver, BC V6Z 2A5
Biography – Dr. Lynda Foltz MD, FRCPC
Dr. Lynda Foltz completed medical school, internal medicine and hematology residency at the University of British Columbia. She worked for two years in community hematology before returning to St. Paul’s Hospital, University of British Columbia to pursue an academic and clinical interest in MPN. Dr. Foltz is now Head of St. Paul’s Hospital Division of Hematology.
Dr. Lynda Foltz
Contact: Dr. Lynda Foltz Tel 604.684.5794 x2 Fax 604.684.5705
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Meeting updates
The annual conference connects MPN patients with medical experts. The 2016 Canadian MPN Network Conference welcomed over 60 MPN patients, their family, and professionals to a diverse day of talks and discussion on MPN in Toronto.
Dr. Vikas Gupta, head of the Elizabeth and Tony Comper MPN Program at Princess Margaret Cancer Centre (Toronto), kicked off the talks with an update on MPN care and research. A Key resource for future advances in MPN is biobanking, he explained. Biobaking is the collection of blood or other types of samples from MPN patients for future research. Analyzing these samples, along with clinical information, allows researchers to investigate important questions such as “which mutations are linked to developing leukemia?” or “do some mutations predict better response to ruxolitinib?” – both topics being investigated by Dr. Gupta’s team.
The conference also heard from stem cell transplant recipient Michael Brady. Following a 2009 PV diagnosis, Michael’s disease progressed to an aggressive form of MF in 2013 and a transplant was recommended. Michael recalled reading about astronaut Chris Hadfield’s experiences preparing for space. Hadfield contrasted how a person would feel about to blast off into space with no preparation versus having prepared. Applying this attitude whole- heartedly, he prepared his mind, body and personal affairs before his transplant.
In 2014, Michael became the first Canadian patient to participate in a clinical trial investigating using ruxolitinib (Jakavi®) to reduce MF symptoms prior to his stem cell transplant. Stem cell transplants carry many risks before, during and even years after. Michael’s transplant has been successful, and asked if his story is typical of MF stem cell transplant recipients, he responded “every story is different”; some who were transplant patients alongside him were less fortunate. This is one of the reasons why transplant is not right for all MF patients and why researchers continue to work to improve the outlook for MF transplant patients.
Cheryl Petruk, Chairman of the Canadian MPN Network, explained the crucial role of the care partners of MPN patients, whether they are a spouse, child, sibling or friend. Cheryl’s husband is an MPN patient and she gave the room an insight into the vital role care partners play in supporting their loved one practically, emotionally and psychologically.
In the afternoon the conference focussed on how MPN patients can improve their symptoms and quality of life through activity. Jenna Morris, an exercise instructor and an ET patient, spoke about the benefits of exercise and activity for MPN patients: “if you take away one thing from my talk, it should be this: any exercise is better than no exercise”. Staying or keeping active she said can help fight fatigue, improve circulation and balance and helps maintain mental wellbeing.
Connor MacLaren, a yoga instructor, spoke about how practices such as meditation, qigong and yoga help promote physical, mental and psychological wellbeing. Connor led the room in some simple demonstrations, showing how just a few minutes of simple movements and focussed breathing leave you feeling calmer, less tense and more flexible. Exercises can also be adapted to a seated position if you can’t stand but it’s important though to tell an instructor about your MPN and what it means (for example if you have an enlarged spleen or are less mobile).
Rounding off the conference, comedian Rob Hawke took on the formidable task of getting a laugh out of cancer. A cancer survivor himself, he invited the audience to share his humorous take on his own cancer journey. This was a light-hearted end to a day of insightful talks and discussion that gave both MPN patients and the medical experts something to take away with them.
The conference was made possible through the financial support of Novartis, Gilead and MEMOTEXT, and the efforts of the Board of Directors of the Canadian MPN Network.
More information on the work Canadian MPN Network, events, and resources for MPN patients can be found at www.canadianmpnnetwork.ca | [email protected]
The Canadian MPN Network is an organization founded and run by persons with MPN and their care partners, which connects and helps Canadians across the country living with MPN.
Canadian MPN Network Conference – Toronto, Canada
Cheryl Petruk, Chairman, Canadian MPN Patient Network photo credit: Canadian MPN Network
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EDITORIAL COMMITTEE: Lynda Foltz, MD, FRCPC
Vikas Gupta, MD, FRCP, FRCPath
Christopher Hillis, MD, MSc, FRCPC
Shireen Sirhan, MD, FRCPC
EDITOR:
Rebecca Devlin, PhD
The Canadian MPN Group Newsletter is published quarterly
For further information, please contact [email protected]
ACKNOWLEDGEMENTSWe would like to acknowledge the support of Novartis Oncology for making this newsletter possible and staff at University Health Network, Visual Servies for their help in the preparation of this newsletter.
CANADIAN MPN GROUP INFO:Tel.: 613-748-9613
Fax: 613-748-6392
Email: [email protected]
Registered Charity: 83976 6136 RR0001
Website: mpncanada.com
Twitter: @MPNGroupCanada
Facebook: facebook.com/ CanadianMPN
The Canadian MPN Group relies on donor contributions to pursue our mission of improving the care and research in patients with myeloproliferative neoplasms.
How to help – you can donate through our website at www.mpncanada.com. For more information on how you can support the Canadian MPN Group, please contact [email protected]
Our thanks go to the employees of Green Shield Canada for their recent generous donation and to Novartis Oncology Canada, who made this newsletter possible.
PRECISION, a national program designed to assess management of PV in Canadian daily practice, has published a series of recommendations on PV management, The national group, led by Dr. Shireen Sirhan MD, held a series of meetings of hematologists to discuss these issues using specific cases. In particular, they focussed on the applicability of European LeukemiaNet (ELN) criteria for hydroxyurea resistance and intolerance.
The group agreed that the ELN criteria are not fully applicable to daily clinical practice, given their development for the purposes of clinical trials. The only recommendation the group
found to be supported by clinical trial evidence is for hematocrit to be <45%. The group identified a number of clinical indicators of HU resistance or intolerance, and noted other important considerations in use of hydroxyurea therapy in PV patients. The full report summarizing their conclusions and consensus recommendations is available on our website [link]. http://www.mpncanada.com/about-mpns/educational-resources/
National lead: Shireen Sirhan MD
Regional chairs: Pierre Laneuville MD, Jeannie Callum MD, Charles Li MD
Funded by Novartis Pharmaceuticals Canada
The MPN e-SIMPLE app was developed with the support of Novartis. The app provides data, resources, and guidance to assist Canadian physicians in daily management of MPNs. The goal is to improve the management of MPNs across Canada by providing point-of-care guidance to our colleagues on therapeutic approaches for each MPN patient.
The app includes disease risk calculators (IPSS, DIPSS, DIPSS Plus and IPVS), resources for MPN diagnosis and risk assessment, and information on treatment options. At present the app covers MF and PV, with ET coming soon.
MPN e-SIMPLE can be used using your web browser or downloaded (Android & iOS, optimized for tablets) at www.mpnesimple.ca
The Canadian MPN Group
PRECISION: Canadian guidelines for PV management
MPN e-SIMPLE App