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MY PERSONAL JOURNEY WITH MULTIPLE MYELOMA

MY PERSONAL JOURNEY WITH MULTIPLE MYELOMA

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MY PERSONAL JOURNEY WITH MULTIPLE MYELOMA

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  1. MY PERSONAL JOURNEYWITH MULTIPLE MYELOMA Aldo Del Col Co-founder, Myeloma Canada Edmonton; October 13, 2018

  2. KEY MESSAGES • Educate yourself: know your disease • New treatments are dramatically increasing life expectancy • Primary myeloma marker (M spike) does not always tell the whole story • I have never been in complete remission • “Carpe diem”  Live your life

  3. LIFE BEFORE MYELOMA • 1954: Born to Italian immigrants in a mining town in Northern Ontario • 1976: BSc Pharmacy, University of Toronto • 1976 – 1979: Community Pharmacist • 1980: MBA (Finance), York University • 1980 – 1982: Financial Analyst, Pharma • 1982 – 1985: Account Executive, Health & Beauty • 1985 – 1999: VP, Sales & Marketing, Consumer Goods • 2000 – 2005: VP & Managing Director, Corporate Travel Management

  4. Initial feeling that “something was not right” December 2001 47 years of age Physical examination & blood tests April 2002 Official diagnosis September 2002 9 months from symptoms to diagnosis What did this tell me? MM is not on the GP’s radar screen Time lapse to diagnosis and treatment is not acceptable IN THE BEGINNING

  5. FIRST BLOOD WORK: APRIL 2002 • Hgb: 123 g/L (Normal: 140 – 175 g/L) • Total serum protein: 96 g/L (Normal: 60 – 80 g/L) • This should have immediately alerted my GP to the possibility of a myeloma diagnosis, but he had no clue • He later told me that he had never seen a myeloma patient over the course of his career

  6. THE DAY MY WORLD CHANGED:SEPTEMBER 12, 2002 • Congratulations! • You have been granted a rare membership to the exclusive Multiple Myeloma Chapter of the League of Hopeless Causes

  7. THE DAY MY WORLD CHANGED:SEPTEMBER 12, 2002 • Congratulations! • You have been granted a rare membership to the exclusive Multiple Myeloma Chapter of the League of Hopeless Causes “I don’t care to belong to any club that will have me as member.” – Grouch Marx ".

  8. THE DAY MY WORLD CHANGED:SEPTEMBER 12, 2002 • Congratulations! • You have been granted a rare membership to the exclusive Multiple Myeloma Chapter of the League of Hopeless Causes • Your membership will expire in 3 years

  9. THE DAY MY WORLD CHANGED:SEPTEMBER 12, 2002 • Congratulations! • You have been granted a rare membership to the exclusive Multiple Myeloma Chapter of the League of Hopeless Causes • Your membership will expire in 3 years • BUT: We can give you toxic, decades-old chemicals and wecan perhaps extend your membership to 5 years

  10. THE DAY MY WORLD CHANGED:SEPTEMBER 12, 2002 • Congratulations! • You have been granted a rare membership to the exclusive Multiple Myeloma Chapter of the League of Hopeless Causes • Your membership will expire in 3 years • BUT: We can give you toxic, decades-old chemicals and wecan perhaps extend your membership to 5 years • Clinical trials? Yes, we have one that we can offer you.

  11. THE DAY MY WORLD CHANGED:SEPTEMBER 12, 2002 • Congratulations! • You have been granted a rare membership to the exclusive Multiple Myeloma Chapter of the League of Hopeless Causes • Your membership will expire in 3 years • BUT: We can give you toxic, decades-old chemicals and wecan perhaps extend your membership to 5 years • Clinical trials? Yes, we have one that we can offer you. • Sorry…there is no local support group or national organization.

  12. YOU ARE ON YOUR OWN!

  13. AT DIAGNOSIS: SEPTEMBER 2002 • Hgb: 123 g/L (CRAB) • Spinal compressions (CRAB) • Total serum protein: 118 g/L (Normal: 60 - 80 g/L) • IgG kappa (heavy chain) • M spike: 55.5 g/L • Extensive bone damage • Recurring infections (cold sores) • Fatigue

  14. AT DIAGNOSIS: SEPTEMBER 2002 • Durie-Salmon Stage III • Heavy disease burden • ISS Stage I • Beta 2 microglobulin: 2.0 mg/L (Normal: 0 – 2.2 mg/L) • Albumin: 37 g/L (Normal: 35 – 451 g/L) • Good prognosis

  15. 1st LINE TREATMENT • High-dose therapy with stem cell rescue (aka stem cell transplant) • Induction  Collection Conditioning  Rescue Recovery • Induction: VAD  port-a-cath infection  high-dose dexamethasone • Post-induction M spike: 7.3 • Conditioning: MEL200 (April 10, 2003) • 16 months from first symptoms • Post-conditioning (transplant) M spike: 8.6 • ⇣ 85% • 2 month recovery period

  16. WATCH & WAIT #1 • April 2003 – January 2006 • 33 months • M spike: 8.6  32.2 • ⇡ 274% • No symptoms

  17. WATCHING & WAITING & WORKING Greater Montreal Myeloma Support Network • Founded November 2004 Myeloma Canada • Founded January 2005

  18. 2nd LINE TREATMENT • Lenalidomide 25 mg + low-dose dexamethasone (Rd) • January 2006 – October 2013 • Almost 7 years! • At full dose: neutropenia (0.3), extreme fatigue • Dose lowered to 10mg • M spike: 32.2  3.5 • ⇣ 89% • M spike gradually increased to 11.9 • No symptoms • BUT  Bone marrow biopsy showed early relapse

  19. 3rd LINE TREATMENT • CyBorD • Cyclophosphamide + bortezomib + dexamethasone • October 2013 – June 2014 • 8 months • M spike: 11.9  8.9 • ⇣ 25%

  20. WATCH & WAIT #2 • June 2014 – April 2016 • Almost 2 years • M spike: 8.9  18.1 • ⇡ 103%

  21. 2014: GOING THROUGH MY BUCKET LIST • Year-long celebration of my 60th birthday • Argentina • Paraguay • Antarctica expedition • Cuba • British Isles • Arctic cruise: Faroe Islands, Iceland, Greenland • Italy • Transatlantic crossing: Spain, Morocco, Canary Islands

  22. 4th LINE TREATMENT • Daratumumab + pomalidomide + dexamethasone (DPd) • April 2016 - April 2017 • M spike: 18.1  7.3 • ⇣ 60% • The treatment is working !!!

  23. 4th LINE TREATMENT • Daratumumab + pomalidomide + dexamethasone (DPd) • April 2016 - April 2017 • M spike: 18.1  7.3 • ⇣ 60% • The treatment is working !!! • Or is it ???

  24. UNFORTUNATELY, IT WASN’T… • February 2017 • Spontaneous fracture of the humerus while I was asleep • Fever • Pneumonia • Hospitalization

  25. 5th LINE TREATMENT • Ixazomib + pomalidomide + dexamethasone (IPd) • May 2017 - February 2018 • M spike: 12.2  16.5 • Progressive disease • Disease-related complications: • Pneumonia • Unexplained fevers • Bone fractures • Debilitating pain • Frequent hospital admissions

  26. STOPGAP “BRIDGE” TREATMENTS • High-dose cyclophosphamide (February 2018) • CyBorD (April – May 2018) • Radiation therapy • Lower spine • Ribs • Poor quality of life • Bed-ridden for 2 months • Debilitating pain • Fatigue • Weight loss • Steep downward spiral

  27. GETTING BACK ON THE HORSE: APRIL 27

  28. 6th LINE TREATMENT • Selinexor + bortezomib + dexamethasone (SVd) • May 2018 - ??? • M spike: 23.9  15.8 after one cycle • ⇣ 34% • Good quality of life • Verylittlenausea • Minimal appetite suppression • Reduction in blood counts (cytopenias) • Hgb • Platelets • Neutrophils

  29. ACCESSING NEW TREATMENTS • Before Health Canada approval • Clinical trials • Special Access Program (SAP) • Post-Health Canada approval (not yet funded) • Clinical trials • Compassionate use

  30. “You will face many defeats in your life, but never let yourself be defeated.” Maya Angelou “We must accept finite disappointment, but never lose infinite hope.” Martin Luther King, Jr. ”Calm mind brings inner strength and self-confidence, and that's very important for good health.” Dalai Lama “To live without hope is to cease to live.” Fyodor Dostoyevsky

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