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Multiple Myeloma Support Groups SAVE LIFE and improve life expectancy - None in your area!  You can now join the Cure Panel on line Support Group !   

5/14/2013

6 Comments

 
I have written in the past that one of the best things your could do is to become your own best advocate, and that knowledge is Power and can SAVE LIFE for the multiple myeloma patient.   Support Group membership is one of the key ways to obtain this knowledge, and I wrote a blog post called,  Multiple Myeloma Support Group Members DO have a longer Life Expectancy and Improved Survival Rate! But is it the chicken and the egg?  In my research for this article I had found that the Support Group leaders reported a life expectancy 2.2 times greater than that reported by the National Cancer Institute.  But there is one huge caveat, and that is that support groups are not always available in your area, or you do now live in an area with a patient population that can support a group.  What do you do?  Travel 200 miles to a meeting?  Well now you can join an on line support group that has it's very first meeting on May 15th at 6:00 pm EST.  You can still sign up for this support group meeting if you just email Priya Menon of Cure Talk at her email address:  [email protected] .  So you can be anywhere in the world and you can be a member of an outstanding support Group.  Pat Killingsworth, author and advocate, has been all over the United States giving presentations at support groups, and has assembled what he believes is an exceptional leadership group for these meetings.  


You can read all about this on line support group in more detail if you just CLICK HERE!  A short bio for each of the Support Group Meeting Leaders is below for your convenience.


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PAT KILLINGSWORTH

Myeloma Beacon columnist and blogger, Pat was diagnosed with multiple myeloma in April 2007 at age 51. Pat is an author of four myeloma books Pat’s books include, Living with Multiple Myeloma, Stem Cell Transplants-A Patient’s Perspective, and New Multiple Myeloma Therapies, and Financial Aid for Myeloma Patients and Caregivers. To book your copy of Pat's latest book, click here. Pat also maintains two blogs, Living with Multiple Myeloma and Help with Cancer.


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SANDY HIRSCH

Sandy Hirsch of Charlotte, NC was diagnosed with Multiple Myeloma in August of 2009. Sandy and her husband, David, started a myeloma support group in 2010, the first in Charlotte.


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SUE VANDUYN


Caregiver Sue VanDuyn has been married to Harold for almost 24 years. Harold was diagnosed three years ago with MM, had a stem cell transplant in September, 2010, and has been in stringent CR ever since the transplant. With the help of the Int’l Myeloma Foundation, Sue and Harold started a myeloma support group for the West Michigan area in June, 2011. Sue volunteers for the International Myeloma Foundation (IMF) as a caregiver advocate and travels to Dallas, Texas each July to assist the IMF at their annual Support Group Summit.


Hope you enjoy this meeting, and learn a lot.  As always may God Bless your Myeloma journey.  Gary Petersen/[email protected]

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1


6 Comments
paula moss
5/14/2013 10:42:18 am

Reply
Pat Killingsworth link
5/15/2013 02:47:54 am

Thanks, Gary! I am looking forward to our support group "experiment" tonight...

Reply
Gary Petersen link
5/15/2013 11:00:26 am

Pat, I think it is a great service to the multiple myeloma community. Break a Leg! Maybe I should not say that to a myeloma patient, cause it may just happen. Good Luck/Gary

Reply
Pat
5/17/2013 04:49:55 am

Right back at you, Gary! Sorry to hear about your wife's breast cancer. Not sure why I didn't know that. Pattie is a three time survivor, so like you, I have also been a caregiver, too. Another thing we have in common!

Reply
Louise link
9/7/2013 11:21:47 am

About 4 months ago I was told by my Dr. I had MM and MGUS
He did a bone marrow ,and I had a reclasp IV and un aware what to expect. Had the IV and 4 days of vomiting and terrible head ach .then I called the nurse and was told I should had drink fluids before injection. I need someone to help me learn more about Mm. Thank You

Reply
Gail Wixon
4/13/2018 06:45:36 am

Hi Pat.
I am from Brisbane Queensland Australia.
I hope your m.myeloma is okay at the moment?
I have been through the v as rious stsges... chemo....
Blood tests.... bone marrow biopsy now done in my hospital. I have gone through a Stem cell transplant but spent 10wks in hospital due to very bad
compliations. Stem cell treatment can be viciious in the mind and body. Now on a chemo drug with various results up and down plus having permanent numb feet and some in my hands. I was 41 when diagnosed and turn 60 this year. Hasn't been an easy time.

Everyone is different with this disease. I do believe in eating paw paw (orange) flavour. It is a gentle healer inside and out.

I do have severe back pain controlled by s special cancer pain patch only availablw on a drs. Script.

I hope you are under a lovely specialist who deals with blood cancer and disorders either a Haemotologist or Oncologist as you need to be
for many reason. I hope i have helped a little in explaining the journey you may need to go understand and go through. Hope your family is supportive to you. Try and keep smilimg. Gail Wixon (Australia)

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    Gary R. Petersen
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    CLICK HERE for my myeloma journey

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