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Survivor Stories
To submit your Survivor Story, or update your existing story, please email muriel@finkelsupply.com
There are many long term survivors of Amyloidosis - here are some of their stories:
| Name |
Type of Amyloidosis |
Date of Diagnosis |
Treatment |
|
Dan Baker |
AL |
2004 |
Chemo, SCT, Dex, Thalidomide Complete Remission. |
|
Tim Bass |
AL |
2002 |
HCD/SCT 2003 HCD/SCT 2007 |
|
Javier Beltran |
ATTR |
2007 |
DOMINO LIVER TRANSPLANT 11/2008 |
|
Lorraine Brown |
AL |
March 2008 |
Valcade |
|
Louis Catania |
AL with MM |
May 1994 |
Chemo then SCT |
|
Ellen Cameron |
Familial |
June 2004 |
Triple Transplant! |
|
Irwin Cohen |
AL |
2000 |
Chemo/Kidney Transplant 4/20/2007 |
|
Jeff Cross |
FAMILIAL TTR |
OCT 2002 |
DOMINO LIVER TRANSPLANT/LIVE DONOR |
|
Lynette Dager |
AL |
Aug 2004 |
Transplant, SCT & Chemo |
|
Ian Edgar |
AL |
2007 |
Mel/Dex |
|
Brenda Gregory |
AL with MM |
December 1997 |
Transplant, SCT & Chemo |
|
Amy Haas |
AA -TRAPS |
Spring 2007 |
Dex/ Remission |
|
Jay Helwig |
AL Cardiac |
May 1994 |
Mel/Pred June 1994 -- SCT Aug 1994- BUMC |
|
Alfred "Bart" Howe |
AL with MM |
MM-Dec 2001
AL -Dec 2003 |
Chemo with Revlimid |
|
Jim Hunter |
Familial |
Sept 1996 |
Heart Transplant 6/6/98 Liver Transplant 3/1/2000
|
|
Fred Jackson |
AL with MM |
Feb 2005 |
SCT |
|
Ray Howard Jones |
AL |
2005 |
Velcade/Dex Remisson 2008 |
|
Steve Keller |
AL |
2004 |
SCT & Chemo |
|
Penny Kubik |
AL |
2003 |
SCT |
|
E.L.K. Hagerstown, Md |
ATTR |
6/26/2002 |
not yet active (AMY is dormant) |
|
John Lee |
Familial ATTR |
Feb 2005 |
Split Liver Domino Transplant |
|
Ernie Longstreet |
AL |
09/29/1999 |
SCT |
|
Anne Madsen |
Familial ATTR |
|
Liver Transplant |
|
MDL |
AL with MM |
Dec 2002 |
Dex prior to SCT |
|
Claire Montour |
Familial apoA1 |
1999 |
Triple Organ Transplant Heart, Liver, Kidney May 20, 2008-Mayo/MN |
|
Jack Moore |
AL |
June 2005 |
SCT |
|
Joni Pearl |
AA |
|
|
|
John Personette |
AL and LYMPHOMA |
2007 |
Chemo- Vinchristine, Rituxin, Prednisone 10/08-3/09 |
|
Kay Rowley |
AL |
FEB 2002 |
Chemo/Complete Remission |
|
Sandi Sadler |
Familial ATTR |
Oct 2003 |
Liver Transplant |
|
Sonya Scarff |
AL |
Apr 2004 |
Chemo |
|
Kathy Spaulding |
AL |
July 2007 |
Melphalan and SCT |
|
Sam T. (PA, USA) |
AL-Pulmonary |
2/6/03 |
Chemo |
|
David Uman |
AL |
Dec 2004 |
SCT & Chemo |
|
IRVIN VANDER LEEST |
AL |
November 2006 |
Chemo |
|
Ronnie Whitson |
AA |
July 2007 |
Kineret (anakinra) |
|
Paulette Wolff |
Localized Lung/Airways |
10-15-2003 |
Radiation right lung |
| AL = Primary Amyloidosis |
AA = Secondary Amyloidosis |
| ATTR = Hereditary Type Amyloidosis |
| MM = Multiple Myeloma |
WM = Waldenstrom's Macroglobulinemia |
To tell others about your own survivor story, please fill out the form below.
Your email address will only be displayed on the page if you specifically request it.
Your name can also be changed if you wish - just put the request in your story at the bottom, with a suggested alternative. Photos are fine - just email muriel@finkelsupply.com
Any general queries - ask Muriel (muriel@finkelsupply.com)
or Elinda (drlado@VERIZON.NET)
Amyloidosis Support Groups
AmyloidosisSupport.com
1-866-404-7539 TOLL FREE USA
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