Hamilton Regional Multiple Myeloma Support Group Hamilton, Ontario, Canada

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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. Scenario 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 Background 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. Mechanism 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. Rehabilitation 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'? Chemo-fog 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. Can-Well 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.