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Monthly Archives: October 2012

Home/2012/October
31 10, 2012

Happy Halloween!

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It's easy to get caught-up in all of the hustle and bustle, pain and inconvenience of living with multiple myeloma.  So I have learned to embrace any reason to break with routine and celebrate.  Let's be honest.  Halloween is a silly holiday; an excuse to shop, eat too much sugar and play make believe.  I

30 10, 2012

Amyloidosis patients need your help!

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Amyloidosis and MDS.  Two blood disorders that multiple myeloma patients and caregivers should understand.  Amyloidosis, because one out of five myeloma patients also have "amy."  And MDS, because as many as 15% of us may develop this precursor to leukemia, caused by the drugs we take to fight our myeloma. I received this urgent letter

28 10, 2012

Old myeloma friends–and ways to make new ones!

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Multiple myeloma survivor, Joyce Schultz, contacted me on facebook to let me know that she is starting a new support group.  The group will meet in Fairmont, Minnesota, which is located in the southern part of the state.  AWESOME! I understand every patient and/or caregiver can't get to a support group.  There may not be

26 10, 2012

Patient Snapshot: 44 year old John Knighten (Part Two)

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At the end of yesterday's Patient Snapshot our new friend,  John, had decided not to undergo a donor transplant, using one of his brother's stem cells.  Instead, he had a stem cell transplant using his own cells. And it worked--at least for a while. To review, a stem cell transplant (SCT) using a patient's own

25 10, 2012

Patient Snapshot: 44 year old John Knighten

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Last month I flew west to speak to a support group in Spokane, Washington.  While I was there, I met an exceptional multiple myeloma survivor, John Knighten. John shared at the meeting how he was preparing for the fight of his life--a tandem auto/allo transplant.  John is only 44 years old, yet he has endured

23 10, 2012

BREAKING NEWS: Pomalidomide continues to deliver as promised

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Does anyone even say, "Hot off the presses!" anymore?  My contact at Celgene just forwarded me this news about pomalidomide five minutes ago: POMALIDOMIDE DEMONSTRATED SIGNIFICANT PROGRESSION-FREE SURVIVAL AND OVERALL SURVIVAL ADVANTAGES IN  PHASE III STUDY OF HEAVILY PRE-TREATED MYELOMA PATIENTS BOUDRY, Switzerland – (Oct. 23, 2013) Celgene International Sàrl, a subsidiary of Celgene Corporation

22 10, 2012

Danny Parker says: Bring on the Raspberries and Pomegranate!

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I'm excited to share another Danny Parker column about myeloma and nutrition with you today!  This report focuses on an important and proven anti-cancer agent--ellgaic acid--which is found in raspberries and pomegranates: Bring on the Raspberries and Pomegranate Okay friends.  After the general downer of telling you about acrylamide last week, I have some good

20 10, 2012

More about my inelastic bone marrow, MDS and a trip to Boca

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I have received a number of supportive emails, following yesterday's post about what I can my "inelastic bone marrow."  Let's face it.  It is pretty pathetic that even following more than a week's rest and a neupogen shot, my absolute neutrophil count (ANC) wouldn't budge. I'm not big on repeating my past myeloma history, but

19 10, 2012

My bone marrow isn’t recovering between maintenance cycles. Could it be MDS?

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Who knew maintenance therapy could be so hard?  My white blood count has a history of being suppressed by Revlimid.  No surprise there.  And my counts have always bounced-back following a week of rest.  But since my stem cell transplant 15 months ago, that reliable resiliency has vanished. The absolute neutrophil count (ANC) is a

16 10, 2012

Patient Snapshot: Ken from Florida (Part Two)

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Today, Ken shares some how he has been able to survive--and thrive--living with multiple myeloma.  Here is Part Two of Ken's story: So, what helped me the most?  First, I had to accept that I was powerless over the diagnosis—not what I did about it.   A daily gratitude list kept me from wallowing

15 10, 2012

Patient Snapshot: Ken from Florida

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I recently met Ken while speaking to a support group near Clearwater, Florida.  Ken is outspoken, animated and full of life!  When I asked him to become a part of my Patient Snapshot series, his enthusiasm burst through. So it shouldn't be a surprise that the myeloma story he would like to share with you

14 10, 2012

Don’t mess around! Blood clots can be fatal in multiple myeloma patients

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Having just arrived home from the airport, these study results really hit home for me.  Check-out this excerpt I found on Haematologica - the Hematology Journal.  I have highlighted some important points in BOLD: Thrombosis is associated with inferior survival in multiple myeloma Sigurdur Y. Kristinsson1, Ruth M. Pfeiffer2, Magnus Björkholm1, Sam Schulman1,3 and Ola

13 10, 2012

Chaos! Mayhem! Lucky me!

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Remember yesterday's story about the difficulties of flying?  And about how planes are too full?  Now I have proof! Let me back up a bit.  Today's trip back home started smoothly enough.  No traffic on the short ride back to the airport.  But once I arrived at Boston's Logan International Airport, things began to unravel.