Hamilton Regional Multiple Myeloma Support Group
Hamilton, Ontario, Canada


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Minutes – July 11, 2009

Hamilton and District MM Support Group

 

Lori introduced herself and Marnie to all the new members.

THALIDOMIDE
Last time there was a discussion regarding patients and or their families going to Mexico to obtain Thalidomide at a very reduced cost. Due to the prominence of this situation, the Ontario Government got involved. An article in the National Post reported that Feds were seizing the drug at the border and patients were dying. There was a heightened call for the Government to reimburse patients and their voices were finally heard. There has been an agreement reached between Celgene and the Government. This took place in June. It is yet to be finalized in writing and is not yet signed, but it should go into effect within one month. Revlamid will be covered. You should all take pride in your part. Lori and Marnie are still collecting petitions.

MYELOMA CONFERENCE London Convention Center September 26, 2009 8:30a.m. - 4:30 p.m. Sells out very fast, see Lori or Marnie if interested

CAN WELL

  • Pilot Program - approx. 30 participants
  • Lori joined - thoroughly enjoys it
  • If the pilot works out - the government will offer some support
  • Someone from Juravinski Center is there to make sure a specific program for each individual is followed.
  • Brochures available.

    Jodi Steele

  • shut down due to financing difficulties
  • she is running a program at Wellspring in Oakville
  • there is no cost
  • brochure available

    FUNDRAISING
    The wife of Glen Steel, a member who recently passed, is hosting a benefit to get a medical machine for Niagara. The event is 'A Night of Magic'. The cost is $16.25. The dates are August 28 and 29, 2009. If you are interested in a fun evening to raise funds in Glen's name, contact Lori for more information.

    NEUROGEN COUPONS
    Lori has multiple coupons for $5.00 off of the purchase of Neurogen. This is a product that may help to alleviate the pain of neuropathy. It boasts an 85% success rate.

    NEXT MEETING
    Saturday, September 12, 2009
    Speaker: Dr. Kouroukis
    Topic: Revlamid
    Hopefully this drug will be covered by then.

    MEMBERS' MYELOMA JOUNEYS

    Elisabeth Teunis

    • from Niagara Falls
    • diagnosed middle of 2005
    • had a new grand daughter
    • started with a backache that wouldn't go away - chiropractor saw a fracture on x ray
    • tumor pressing on vertebrae causing pain
    • husband, Doug, always accompanied for appointments
    • tests not always 'pleasant'
    • never heard of Myeloma
    • looked it up on the internet
    • not pretty
    • very depressing
    • medical system provided the very best care
    • MRI within one week
    • referred to Juravinski for second opinion
    • radiation eradicated tumor
    • very important to know all options
    • Dr. Benger stated she was a good candidate for transplant
    • treatment every month with a four day pump
    • support from family, friends, neighbors
    • went to alternative methods as well as traditional medicine
    • prepared for transplant
    • day of harvest they retrieved 60 million stem cells
    • transplant - January 9, 2007
    • Henderson Hospital - old & depressing facility
    • January 10/07 - chemo treatment
    • January 11/07 - actual transplant
    • will never go through this again
    • carried on every day with routine in hospital
    • could not eat or drink
    • in for birthday - staff very nice, which helped
    • the first night she had a really good sleep, she had been given - a morphine overdose, thankfully her roommate called for help
    • home after three weeks
    • she suffered the worst side effects the doctor had seen
    • great to be home, even though very weak
    • 4 months post, went to a wedding in the Dominican
    • great to be alive
    • July - surgery on vertebrae - has seen improvement
    • it took 8 months for a full, proper diagnosis
    • there were 8 months of preparation
    • sees oncologist every 3 months
    • so far so good
    • she has learned very much, not necessarily info she wanted to know
    • has participated in the Toronto walk for the last 3 years
    • has raised a total of $10,000.00
    • support group has been very helpful
    • does not dwell on 'what if'

    Lorraine MacDonald

    • diagnosed January 6, 2005
    • attended the very first meeting for MM on January 8/05
    • she and husband came
    • was overwhelmed, but grateful for group
    • has only missed one meeting since
    • family meeting on June 27, 2005
    • should only be off work for 3 months
    • actually off for 6 months
    • eventually had transplant
    • doctor wanted to collect at least 10 million cells - she had 21.5 million
    • complete support of her husband, Dale
    • maintained a positive attitude
    • March - found out they would be first time grandparents
    • baby due in November, which helped her along
    • August 2, 2005 - transplant scheduled
    • viral infection caused delay of transplant - had to wait for 3 weeks
    • September 30, 2005 - transplant
    • bone pain very minimal
    • handled it very well
    • has been back at work for 3 years
    • has a check up every 3 months
    • she takes no drugs other than vitamins

    Rob Darwen

    • diagnosed end of 2002
    • suffered with symptoms for 2 years prior to diagnosis
    • AMYLODOSIS
      • secondary problem
      • can cause kidney and heart issues
      • his has settled in the kidneys
      • leaking water into various cavities
      • he is carrying 35 lbs of water
    • Dr. David Russell - St. Joseph's Hospital - this Dr. figured out both problems
    • started with Dr. Foley who did a biopsy
    • confirmed Myeloma
    • scheduled for transplant
    • kidneys could not cope with normal medications - cut by 25%
    • 6 months of treatment
    • only in hospital for one week
    • staying in hospital not conducive to recovery
    • evidence of stem cells grafting to bone marrow - 2 wks later
    • good grafting noted
    • May - some level of normalcy
    • January 2004 - back to work until kidneys gave out
    • April 2007 - kidneys failed
    • Dr. Ingram started dialysis
    • blood pressure, calcium, phosphorus, all controlled by kidneys
    • had to start monitoring these components
    • conference with doctor every 2 weeks
    • possibility of kidney transplant
    • not good stats for cancer patients, but not impossible
    • joined in advocacy for Velcade & finally won
    • started Velcade
    • the most miserable experience of his life
    • selection of treatment is imperative
    • now taking Revlamid at 15mg
    • seems to be working well with very few side effects
    • progress being monitored through Kapa Lamda
    • monitored through blood rather than biopsy

      Lori thanked the speakers for sharing their private journeys.

      The floor was opened to a question and answer session for everyone, especially the new comers.

      Next Meeting September 12, 2009.

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