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17 10, 2015

Thank you rant

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A number of you have already contributed to help CrowdCare Foundation fund a pair of cutting edge T cell trials in Germany and John Hopkins in Baltimore. THANK YOU! For those of you on-the-fence, I wanted to share some good news. A friend has agreed to match any contribution—dollar for dollar—up to a total of

28 09, 2015

Beware of “myeloma mirage”

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Regular readers understand that my blog isn't all about me. One of my heartfelt goals is to help all of us--from "experienced," relapsed patients, to people living with MGUS or smoldering myeloma--improve our multiple myeloma IQ's. Sometimes I worry that reading about all I'm going through might freak out newly diagnosed patients. That would be

1 05, 2015

Living to Make a Difference: Mike Katz (Part Two)

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Writer Greg Brozeit reminds us that any myeloma patient that has ever taken dexamethasone owes Mike Katz a heartfelt "Thank you!" Living to Make a Difference: Mike Katz (Part Two) By Greg Brozeit I was a witness to the second great clinical achievement for which Mike was largely responsible. Every year at the IMF’s annual

27 04, 2015

Myeloma legend Mike Katz has died

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Mike Katz was the longest living myeloma patient I've ever met; I believe it has been 25 years since he was first diagnosed. I met Mike at my first ASH six years ago.  A mainstay at International Myeloma Foundation (IMF) events, Mike worked tirelessly for the group, pressing on even when he wasn't feeling good.

16 02, 2015

Another creative way to get the word out

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There are lots of different ways to get the word out about multiple myeloma.  Here's a fun, silly one, courtesy my newly adopted, North Florida support group doing the mambo for myeloma: There wasn't much room, so I volunteered to move up-front and mambo on my knees.  We're "dancing" to a modified version of

13 01, 2015

Selinexor shows promise; fewer side effects than existing therapies

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A reader emailed me yesterday with questions about a clinical study featuring the experimental drug, selinexor (KPT-330).  A year ago, The International Myeloma Foundation's (IMF) Medical Director, Dr. Brian Durie, shared his excitement about eight different new myeloma therapies prior to ASH 2013.  Selinexor,  an oral drug from Karyopharm, was one of them: ASH insight

3 12, 2014

We made the cover!

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Our local newspaper featured an article about Pattie and me today.  Apparently one of the reporters read a story about me in a radiology newsletter and decided to follow up.  Here's the first half of the article: Never Enough Time Heather A. Perry - News Leader December 3, 2014 Pat and Pattie Killingsworth have faced

6 07, 2014

Experts starting to agree: Myeloma and diet linked

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Topping yesterday's summary list of foods for multiple myeloma patients to avoid: excessively toasted breads and baked goods. The process produces a acrylamide, a well known carcinogen.  For years myeloma specialists have told patients that diet has nothing to do with multiple myeloma.  This was still the prevailing view in 2012.  Danny Parker was ahead

24 04, 2014

Relaxation, exercise and nutrition webinar broadcast May 8th

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International Myeloma Foundation Support Group Director, Robin Tuohy, asked me to post information about an upcoming informational teleconference, sponsored by the IMF.  Glad to help get the word out, Robin! INTERNATIONAL MYELOMA FOUNDATION presents Living Well with Myeloma Teleconference Series “Living Well with Myeloma:  Stopping to Breathe While Moving Forward! The benefits of rest, relaxation,

2 04, 2014

Don Baylor, Congressional recognition and Vorinostat update

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I wanted to share a variety of myeloma related news with you this morning.  Do you remember my interview of legendary baseball star and Los Angeles Angels hitting coach and multiple myeloma survivor, Don Baylor? Cure Magazine interviews me; plus my on-air interview with Don Baylor   Tuesday Don Baylor broke his femur while reaching

9 12, 2013

Welcome to the wild wild west of myeloma therapy!

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Covering technical, four hour events like Friday’s pre-ASH symposium can be challenging; even grueling.  My peripheral neuropathy and back pain makes it hard to sit still and type on the fly.  And this year I'm trying to tweet simultaneously while blogging. It’s hard for a symptomatic myeloma survivor to cover as much material as a

7 12, 2013

Why doctors shouldn’t discard tried and true therapies for shiny new models

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Yesterday I wrote about the first half of the pre-ASH symposium, Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013. Picking up where I left off Friday, Dr. Jesus San-Miguel argued for using melphalan as part of induction therapy for elderly patients.  Interestingly, fellow European, Italian Dr. Antonio Palumbo, argued no.  Rarely

7 12, 2013

Onyx to help fund IMF’s Black Swan Initiative

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After listening to a number of the world's top myeloma experts plead for better, more exacting diagnostics--and more definitive answers as to which patients should be treated with what drugs--news like this should be welcome indeed! The International Myeloma Foundation Announces Partnership With Onyx Pharmaceuticals to Support Black Swan Research Initiative(TM) Black Swan Research Initiative