• Home
  • CML Experts
    • Team of experts on CML who developed imatinib >
      • Dr. Elisabeth Buchdunger
      • Dr. Brian Druker
      • Dr. John Goldman
      • Dr. Nora C. Heisterkamp
      • Dr. David Hungerford
      • Dr. Nicholas Lydon
      • Dr. Alex Matter
      • Dr. Felix Mitelman
      • Dr. Peter C. Nowell
      • Dr. Carlo Gambacorti-Passerini
      • Dr. Moshe Talpaz
      • Dr. Janet D. Rowley
      • Dr. Charles Sawyers
      • Dr. Jürg Zimmermann
      • Dr. Owen Witte
    • Experts involved in developing dasatinib >
      • Dr. Jagabandhu Das
    • Experts involved in developing nilotinib
    • Other CML experts in America >
      • Other CML experts in Canada >
        • Dr. Sarit Assouline
        • Dr. Lambert Busque
        • Dr. Robert Delage
        • Dr. Connies Eaves
        • Dr. Josée Hébert
        • Dr. Pierre Laneuville
        • Dr. Isabelle Bence-Bruckler
        • Dr. Jeffrey H Lipton
        • Dr. Luigina Mollica
      • Other CML experts in US >
        • Carolyn Blasdel, RN , FNP-BC, OCN
        • PATRICIA JAKEL, RN, MN, AOCN
        • Rey Garcia, RN, BSN
        • Dr. Ravi Bhatia
        • Dr. Jorge E. Cortes
        • Dr. Arul Chinnaiyan
        • Dr. Michael Deininger
        • Dr. James D. Griffin
        • Dr. Frank Giles
        • Dr. Elias J. Jabbour
        • Dr. Hagop Kantarjian
        • Dr. Harry P. Erba
        • Dr. Richard A. Larson
        • Dr. Alison Loren
        • Dr. Michael Mauro
        • Dr. Stephen D. Nimer
        • Dr. Ruben A. Mesa
        • Dr. Susan M. O'Brien
        • Dr. Jerald P. Radich
        • Dr. Karen Seiter
        • Dr. Neil Shah
        • Dr. Richard Stone
        • Dr. Raoul Tibes
        • Dr. Bin Zhang
    • Other CML Experts in Europe >
      • Dr. Jane Apperley
      • Dr. Michele Baccarani
      • Pr. Agnès Buzyn
      • Dr. Gabriel Etienne
      • Dr. Marie-Joëlle Mozziconacci
      • Dr. François Guilhot
      • Dr. Eliane Gluckman
      • Dr. Andreas Hochhaus
      • Dr. Stephen O'Brien
      • Stéphane Prost
      • Dr. Tessa L Holyoake
      • Dr. Hana Klamova
      • Dr. Jeroen J.W.M. Janssen
      • Dr. Franck-Emmanuel Nicolini
      • Dr. Delphine Rea
      • Dr. Johan Richter
      • Dr. Philippe Rousselot
      • Dr. Giuseppe Saglio
      • Dr. François-Xavier Mahon
      • Pr Gregor Verhoef
    • Other CML experts in Asia >
      • Dr. Charles Chuah
      • Dr. Goh Yeow Tee
      • Dr. Pankaj Malhotra
      • Dr. Hemant Malhotra
      • Dr. Kim Dong-Wook
    • Other CML experts in Africa >
      • Dr. Anthony Oyekunle
    • Other CML experts in Australia >
      • Dr. Susan Branford
      • Pr Tim Hughes
      • Dr. Anthony P Schwarer
  • Medical Concepts
    • Introduction to CML
    • Blood
    • Bone Marrow
    • DNA
    • Immune System >
      • Natural killer cell - NK
      • T Cells
    • JAK2 Gene
    • Treatment response in CML
    • Polymerase Chain Reaction >
      • Dr. Kary Bank Mullis
    • Stem Cells
    • Donor lymphocyte infusion (DLI)
    • Blood-Brain Barrier
    • Interferon regulatory factor 8 (IRF8)
    • Myeloproliferative disorders (MPD) >
      • Introduction to CML
      • Essential Thrombocythemia (ET)
      • Myelofibrosis (MF)
      • Polycythemia Vera (PV)
    • Types of leukemia >
      • Atypical chronic myeloid leukemia
  • Medication
    • Hydroxyurea
    • Interferon Alpha
    • Gleevec (Imatinib) >
      • Generic Gleevec (Imatinib)
    • Tasigna (Nilotinib)
    • Sprycel (Dasatinib)
    • Bosulif (Bosutinib)
    • Iclusig (Ponatinib)
    • Supect (Radotinib)
    • ABL001 (Asciminib)
    • Synribo (Omacetaxine )
    • Jakafi (Ruxolitinib)
    • (Bafetinib)
    • (Danusertib)
    • (Rebastinib)
    • BGB324
    • PF-114
    • NEV-801
    • BP1001
    • K0706
    • Vidaza (Azacitidine)
  • Managing side effects
    • List of side effets >
      • Bone Pain
      • Depression
      • Eyes
      • Ear
      • Fatigue
      • Fluid Retention
      • Gastrointestinal system
      • Hair
      • Heart
      • Hepatotoxicity
      • Kidney
      • Muscle cramping
      • Peripheral arterial disease in CML
      • Pleural effusion
      • Pulmonary arterial hypertension
      • Skin
      • Weight gain
    • CML and Nutrition
    • Psycho-Oncology
    • Complementary and Alternative Medicine >
      • Art Therapy >
        • Art Therapist
        • CMLer's portofolio
      • Music therapy >
        • YouTube creation by CMLer's family
        • Magnificent (I Believe)
        • Adagio for Strings (Samuel Barber)
      • Yoga
      • Physical Activity
      • Zootherapy
  • Patient Testimonials
    • Virginia Garner
    • Pat Elliott
    • Jan Geissler
    • Kris
    • Nigel
    • Katie
    • Tamera Simonson
    • Hans Loland
    • Alyssa
    • Brown Dudley
    • Erin Havel (Author)
    • Erin Zammett Ruddy
    • Rob Shick
    • Gary Gonzales
    • Ron Robbecke
    • Drew Johnston
    • Angela Tyrrell
    • Doug Jenson
    • Rich Jones
    • Kevin Williams
    • Jean McGlynn
    • Austin Granatowicz
    • Tom Cleaver
    • Others testimonials
    • Some celebrities >
      • Alexa Score
      • Laura Boyd
      • Dr. Richard Rockefeller
      • Tim Holcomb
      • Doris Muramatsu
      • Ryan O'Neal
      • Charlie Schlatter
      • Kelvin Alston
      • Kareem Abdul-Jabar
      • Jason Blake
      • Brian Boyle
      • Roman Reigns
      • Rick Upchurch
    • Bud Romine - the first patient
    • Kayla Naton (Pregnancy)
    • Suzan Mc Namara and the petition
  • Blogs
    • Access CML Drugs
    • Trey's CML Leukemia Blog
    • Living with CML
    • CMKID's blog – Dislodging the bullet
    • CML Recovery - Stopping KTI
    • Hans's Blog
    • Elizabeth's Blog - my leukemia journey
    • Elizabeth's Blog - Heart of the rose
    • Ian's Blog
    • Joe's Blog
    • Jon's Blog
    • Josh's Blog
    • Mannan's Blog
    • Justin Ozuna's Blog
    • Lindsey's Blog
    • Matt's Blog
    • Matthew's Blog
    • Michelle's Blog
    • Michelle D's Blog
    • Nayree's Blog
    • Rob's Blog
  • News on CML (Chronic myeloid leukemia)
    • English
    • English- Archives 2017-2016
    • English - Archives 2015-2001
    • French (Français)
    • Spanish (Español)
  • Various topics
    • You’ve just been diagnosed
    • History of CML
    • Cure possible for CML? >
      • Inhibitory effect of c-Myc on p53-induced apoptosis in leukemia cells
      • Inhibition of the protein Ezh2 can cure CML?
      • Combination of ruxolitinib with tyrosine kinase inhibitor
      • Combination of pioglitazone with tyrosine kinase inhibitor
      • Combination of miristen with tyrosine kinase inhibitor
      • Combination of Inecalcitol with tyrosine kinase inhibitor
      • Combination of dasatinib plus Nivolumab
      • Combination of interferon with tyrosine kinase inhibitor
      • Combination of Venetoclax with tyrosine kinase inhibitor
      • Inhibition of STAT5 in conjunction with standard TKI therapy
      • CML vaccine
      • Can immunotherapy cure leukemia?
      • Chimeric Antigen Receptor T-Cell Therapy
      • Can genetic sequencing help to cure leukemia?
      • Natural Medicine >
        • Possible cure for CML in Fish Oil
        • Betel leaf may help fight CML
        • Feverfew extract (parthenolide)
        • Can dandelions kill cancer?
        • Can curcumin cure leukemia?
      • Can the new drug CX-5461 cure leukemia?
      • CRISPR-Cas9 gene-editing technique
      • Presence of bcr abl fusion transcripts in healthy individua
      • Math could help cure leukemia
    • Treatment free remission (TFR ) >
      • The French trial called STIM (Stop Imatinib)
      • De-escalation of treatment
    • CML causes
    • CML and pregnancy
    • Children with CML
    • Food and Drug Interactions
    • Bone marrow transplant
    • CML Blast Crisis treatment
    • Stem cells from umbilical cord blood
    • Mutation T315I
    • Sensitive detection of BCR-ABL1 mutations
    • Elderly patients with CML
    • Living with CML and diabetes
    • Non-adherence of CML patients
    • Vaccination of CMLers
    • Sports with CML
    • Pronostic, life expectancy, quality of life, ..... in chronic myeloid leukemia
    • CML Awareness Day
    • The movie "Dying to Survive"
  • Congresses, conferences, meetings ASH, ASCO, EHA ...
    • ASCO - American Society of Clinical Oncology >
      • ASCO 2018 - Chicago
      • ASCO 2017 - Chicago
      • ASCO 2016 - Chicago
      • ASCO 2015 - Chicago
      • ASCO 2014 - Chicago
      • ASCO 2013 - Chicago
      • ASCO 2012 - Chicago
      • ASCO 2011 - Chicago
      • ASCO 2010 - Chicago
    • ASH - American Society of Hematology >
      • ASH 2018 - San Diego
      • ASH 2017 - Atlanta
      • ASH 2016 - San Diego
      • ASH 2015 - Orlando
      • ASH 2014 - San Francisco
      • ASH 2013 - New Orleans
      • ASH 2012 - Atlanta
      • ASH 2011 - San Diego
      • ASH 2010 - Orlando
      • ASH 2009 - New Orleans
    • BTG - Bridging the Gap >
      • BTG 2011 - Singapore (Singapore)
    • CML & MPDs - UK National Meetings
    • CML Horizons >
      • CML Horizon 2018 -Warsaw (Pologna)
      • CML Horizon 2017- Frankfurt (Germany)
      • CML Horizon 2016 - Ljubljana (Slovenia)
      • CML Horizons 2015 - (Barcelona, Spain)
      • CML Horizons 2014 - ( Belgrade, Serbia)
      • CML Horizons 2013 - (Prague - Czech Republic)
      • CML Horizons 2012 - (Munich, Germany)
      • CML Horizons 2011 - (Amsterdam - The Netherlands)
    • EHA - European Hematology Association >
      • EHA 2018 - Stockholm(Sweden)
      • EHA 2017 - Madrid (Spain)
      • EHA2016-Copenhagen,(Denmark)
      • EHA 2015 - Vienne (Austria)
      • EHA 2014 - Milan (Italy)
      • EHA 2013 - Stockholm (Sweden)
      • EHA 2012 - Amsterdam (The Netherlands)
      • EHA 2011 - London (England)
      • EHA 2010 - Cascais (Portugal)
      • EHA 2009 - Berlin (Germany)
      • EHA 2008 - Copenhague (Danemark)
    • ESH - European School of Haematology >
      • ESH 2016 - Houston - USA
      • ESH 2015 - Estoril - Portugal
      • ESH 2014 - Philadelphia
  • Educational videos
    • Educational videos (in English)
    • Educación de vídeos en español (in Spanish)
    • Vidéos pédagogiques en français (in French)
  • Educational events
  • CML Glossaries
  • Professionnel help and literature
  • International publications
    • Publications from Africa
    • Publications from America
    • Publications from Australia
    • Publications from Asia
    • Publications from Europe
  • Specialist Journals in Hematology/Oncology
  • Patient Rights
  • Moral Support
    • Where to get help and support
    • Family support
    • I Had Cancer: You are not alone
    • I’m A Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew
    • 23 Nice Things You Can Do for Someone With Cancer
    • The march toward healing
    • Be happy
    • Dances at the Cancer Research Centre
    • The spoon theory
    • Stronger
    • Magnificent - Beauty of nature
  • Links to other sites, forums and Facebook
    • Sites ( English and other languages)
    • Forums
    • CML on Facebook
    • CML on Twitter
    • Audio Podcast
  • Foundations
    • Leukemia Foundations >
      • American Cancer Society
    • Hospital Foundations
  • About us
    • Guestbook
    • Contact us
Chronic Myeloid Leukemia

Suzan Mc Namara - Chronic Myeloid Leukemia - CML

             Suzan Mc Namara is the patient  who started a petition to Novartis which is a corporation that produced pills for clinical trials conducted by Dr. Druker for CML patients. This is because the pills were only produced for these trials and not for the overall population. Thus, she was unable to take this new medication that was superior to the one she was currently prescribed. 
           Later, she received a phone call from
Dr. Druker at her birthday (November 2, 1999), saying that Novartis has planned to speed up production. Finally, Suzan Mc Namara started in the trial on January 1, 2000 and went in complete remission.
          


‘’Novartis decided to produce at least the few pounds of STI-571 needed for an initial trial, and Dr. Druker began recruiting patients in June 1998. By December 1999, in a Phase 1 trial intended merely to find a safe dose, he reported that 23 of 24 patients on a high dose had gone into complete remission within a month, as judged by the return of white blood cell count to normal levels.

Within a few months the news of STI-571 began to spread among C.M.L. support groups on the Internet. Patients clamored to be enrolled, and Dr. Druker pressed Novartis for more of the drug. But the company was in a bind. Most candidate drugs fail in the testing process, however promising the initial results. To scale up so early from manual methods of synthesis to an industrial scale process would be an enormous risk.

At this point a novel factor entered the company's usual decision making: organized pressure from patients. ''What really convinced Novartis was pressure from patients who could see this was a wonder drug,'' said Dr. Lydon, who left the company 1997 to form his own company.

One of those patients was Suzan McNamara of Montreal. The interferon she was on made her miserable, causing hair loss, depression and insomnia. Ms. McNamara called Dr. Druker, who said he had no drug to give her. Recalling a Web site that helped generate petitions for causes like favorite television programs, Ms. McNamara, with the help of a physician friend, drafted a petition to Novartis.

''We were hoping to get 200 names, and in two months before you knew it we had 2,000,'' she said. ''So we found the big honcho's name in Switzerland. We all put in our two cents and typed up the letter, saying there were people dying because they weren't getting the drug in time.''

The chief executive of Novartis, Dr. Daniel Vasella, said he had been impressed with messages he received from the patients. ''There was a big debate internally because we didn't have product,'' Dr. Vasella said of the shortages of STI-571. ''That was when I had the first communication with patients, and that's when I very much pushed for our people to make it. We needed to go from kilograms to tons. At the end of the day you are talking about something that can make people live or die.''

Within a month of sending her petition, Ms. McNamara received a phone call from Dr. Druker. ''It was on my birthday,'' she said. ''He said: 'I heard your petition has done lots of good. I think it really pushed them.' '' The company itself sent her a letter saying it planned to speed up production.

''I started in the trial on Jan. 1, 2000, and I'm in complete remission,'' she said. ''It's a fairy tale story.''

Dr. Vasella said that one of his reasons for advancing STI-571 into full-scale production, despite the very early stage of its progress and the small population of patients, was a feeling that its applications would grow. As project manager for the Sandoz drug Sandostatin, he had found that the drug turned out to have more uses than initially predicted. ''So you add knowledge and insights, and I think to block something too early is a mistake,'' he said. ‘’

Extract of New York Times

'' Dr. McNamara obtained her PhD in Experimental Medicine from McGill University. Her studies focused on mechanisms of resistance for the treatment of hematological malignancies. Following her doctorate, she joined Health Canada as an Assessment Officer where she was responsible for the licensing of health products. She then joined the Quebec-Clinical Research Organization in Cancer as Project Manager where she manages study clinical related activities that include site initiation, investigator and ethical review board information, patient recruitment, and clinical data. She plays an active role in the ongoing scientific development of the CML Society. Dr. McNamara was diagnosed with CML when she was 31 years old and was actively involved in helping other CML patients obtain access to the new Tyrosine Kinase Inhibitors to control CML. After finally achieving remission from CML she went back to her studies and completed her PhD.''
Extract of The CML Society of Canada (who we are)

Back from Ireland to a news article about Suzan McNamara
June 2005, Cheryl-Anne Simoneau










          (See our disclaimer - Voir notre avis de non-responsabilité- Vea nuestro aviso legal).

Copyright © 2010-2019 CMLeukemia.com
DMCA.com Protection Status