Hamilton Regional Multiple Myeloma Support Group
Hamilton, Ontario, Canada

Home Page

Who We Are

Where We Meet

Upcoming Meetings

Past Meetings


Supporting Each Other





Minutes – May 9, 2009

Hamilton and District MM Support Group


Lori asked for any members who might be interested in participating in the July Meeting. Three patients are required to speak about their MM journey from diagnosis to present. Each participant should speak for approximately 30 minutes.

Mailing with petitions - if you did not get one, leave your name with Lori or Marnie and they will see that you get the necessary information. - If you did get one, the cause is ongoing, sign on the front only, there are more available as needed.

Revlimid - B.C. has approved it. - Nova Scotia has denied it. - All other provinces are unchanged - cost for 21 capsules, a three week supply, is $9794.40 + fee

Thalidomide - cost for 30 capsules, a two week supply, is $900.00 - Everyone should keep working to get drugs approved.

Lori shared an article regarding Revlimid, Thalidomide, and Velcade.

There are three 'Drug Access Facilitators' unique to the Juravinski Cancer Centre. They are available as a liason when seeking aid for drug costs.

Lori introduced today's speaker, Dr. Richard Tozer. The topic is Chemo Brain/Fog.

  • 36 year old female
  • 6 cycles of CEF Chemo

1 year later

  • hard time adjusting
  • cannot multitask
  • lost interest in past hobbies
  • forgot to get children
  • began to wonder if cancer had traveled to brain

    Disclaimer - there is no known treatment for chemo-fog. It is most studied in Breast Cancer. Objective: What is it? What do studies show? What to do about it?

  • Cognitive Dysfunction
  • Poor concentration
  • Slowed mental and motor speed
  • Impaired short term memory
  • Impaired psychomotor function
  • Mild to moderate in severity, worsens with increased dose of chemo, up to ten years of long term problems.

    Why does it matter?

  • Informed treatment decisions
  • Patient education
  • Evaluation of new Cancer treatment (therapeutic benefit vs. risk)
  • Providing relevant clinical assessments
  • Interventions
  • Informing policy makers and Insurance Companies


  • Historically attributed to stress, mood changes
  • Emphasis on survival
  • Chemo agents thought not to cross blood-brain barrier
  • Cognitive effects are subtle

    Multiple studies show between 17% to 75% cognitive complaints Manifests typically as

  • poor concentration
  • slowed mental and motor skills
  • impaired short term memory

    Frequent lack of association between self report of cognitive problems and results of studies.


  • MRI, PET, EEG, all scientifically confirm symptoms
  • No study has been done sequentially
  • Can lead to mini strokes
  • Can change levels of hormones
  • Animals have demonstrated a reduction in cells that insulate nerve cells in the brain.

    Rule out

  • CNS metastes
  • Infections/fever
  • Nutritional defects
  • Age related cognitive defects
  • sleep disorders
  • Medications

    Chemo-fog is not due to any one thing, it is multi-factorial. It is very difficult to treat.

    Erythropoietin was tried as a prevention medication. Studies showed there was NO change. Methylphenidate a medication used for tumors, HIV did not help. Modafinil used for narcolepsy is currently underway in a trial. It is potentially promising.


  • Talk about chemo-fog
  • Be aware up front
  • Educate yourself - stress management
  • Multitask - quietly and alone
  • Make use of lists
  • Avoid concurrent multiple tasks - do not over exert
  • Avoid emergency situations
  • Increase sleep
  • Decrease workload

    Exercise the Brain

  • Reading
  • Puzzles
  • Play a musical instrument
  • Art
  • Learn something new
  • Exercise your body
  • Eat vegetables

    Accept the problem. It often helps. Find humor where possible. 'I HAVE CHEMO BRAIN, WHAT'S YOUR EXCUSE'?


  • It is real
  • The cause is unknown
  • There is a significant impact on daily life
  • For most, it will get better

    Questions were taken and answered.


  • for cancer survivors
  • New program at the YMCA at Turner Park on Hwy 53
  • You have to be a member; however, there is apparently a 'sliding fee schedule'

    Next Meeting Saturday, July 11, 2009.