Recent Changes

Below we have provided a list of significant changes to the site. We hope this will assist you in keeping up-to-date.

15-September-2017Nina Tartakoff updated her story of 2007
13-September-2017Albert Brooks updated his story of 2015
14-August-2017Notice re change to True North Therapeutics and their drugs added to Home Page
11-July-2017Ruth Lopez added to CADdys
30-May-17Jeannette Thele added to CADdys
18-February-17David Adams added to CADdys
7-November-2016Carole Myers-Rakes added to CADdys and Stories
8-September-2016Albert Brooks updated his story of 2015.
9-April-2016Frances Firman added to CADdys and Stories
2-April-2016Rosella Guiot added to CADdys and Stories
25-February-2016Vicki Christiansen added to CADdys and Stories
9-February-2016Two new Links to Other Sites and Articles added - 2014 and 2015 (both from True North Therapeutics, San Francisco)
4-February-2016New True North Therapeutics Project - see note on Home Page
7-January-2016Marty Skeeles added to CADdys
28-December-15Marilyn Kurnell added to CADdys
28-December-15Debra Kalmbach Rucker added to CADdys
27-December-15Eleanor Gordon added to CADdys
20-October-15Cliff Farrell added to CADdys
29-June-15Susan Dutton added to CADdys
25-June-15Graeme Hore has updated his 2007 story.
25-June-15Øivind Bjørkås has updated his 2013 story.
20-June-15Michelle Byrne added to CADdys
16-June-15Evelyn Clintsman added to CADdys
28-May-15 Theresa B. Sanborn added to CADdys
15-Mar-15John Reed added to CADdys
26-Feb-15Albert Brooks added to CADdys
12-Jan-15John Hibberd added to CADdys and Stories
29-Dec-14Laurie Riffle has updated her story.
19-Nov-14New Drugs for B-Cell Diseases


The current trend is away from chemotherapy and towards using monoclonal antibodies to treat Blood Cancers and Autoimmune Diseases. There are several new drugs in the pipelines, some approved already for blood cancers--B-Cell chronic lymphocytic leukmias, lymphomas, myelomas and some are showing promise in clinical trials.

These drugs may have potential application for refractory (relapsed) CAD and other autoimmune diseases such as rheumatoid arthritis and multiple sclerosis.

One is oral Imbruvica (ibrutinib) a BTK inhibitor, another is Zydelig (Idelalisib) tablets. Gazyva (obinutuzumab) (GA 101) and Arzerra (ofatumumab) (Hu-Max CD-20) a humanized monoclonal antibody most similar to Rituxan. As with many drugs, these have risks of severe toxicities and are not to be used except in stubborn or more severe cases and as determined by your medical professionals. Some have been tested to be used in combination with chemos and/or Rituxan. Rituxan is still the treatment of choice for CAD in addtion to folic acid and keeping warm.
There's much information for you to learn about the above drugs on the internet.
4-Aug-14Ron Martin added to CADdys
4-May-14Mark Libecci added to CADdys
4-May-14Henriette Klaseboer added to CADdys
4-May-14Silvia Herreros Pompili added to CADdys
4-May-14Frances Firmin added to CADdys
8-Apr-14Kathleen Bentzoni added to CADdys
16-Mar-14Carole Chilton added to CADdys
9-Feb-14Recommendations on Australian footwear from Fred have been added to Managing CAD
9-Feb-14Linda Foster added to CADdys
6-Feb-14Tina Cleveland added to CADdys
6-Feb-14Pam Wright added to CAddys
4-Feb-14Elaine Levy added to CADdys
4-Feb-14TNT009, a Classical Complement Pathway Specific Inhibitor, Prevents Complement Dependent Hemolysis Induced By Cold Agglutinin Disease Patient Autoantibodies added to Links
30-Jan-14TNT009, a Classical Complement Pathway Specific Inhibitor, Prevents Complement Dependent Hemolysis Induced By Cold Agglutinin Disease Patient Autoantibodies - added to Links
9-Jan-14Maureen McDonough Roddy added to CADdys
9-Jan-14Craig Bruesewitz added to CADdys and Stories
10-Dec-13David McAdam added to CADdys and Stories
29-Nov-13Joule Charney added to CADdys
24-Nov-13Earle Messere added to CADdys
15-Oct-13Stephanie Koll added to CADdys
Our Rituximab Page has a link to the article.
21-Sep-13Art Brown added to CADdys and Stories
15-Sep-13Rony Zakheym added to CADdys
10-Sep-13Barry Bonnell added to CADdys and Stories
3-Aug-13Eva Lawrence added to CADdys
26-Jul-13Jeri Mastny added to CADdys and Stories
26-Jul-13Fred Hartman has updated his story
7-Jul-13Øivind Bjørkås added to CADdys and Stories
25-Jun-13On the Home page, there are details on how you can take part in a research study for Cold Agglutinin Disease....Betty Usdan.
22-Jun-13Marla Vanderlaan added to CADdys and Stories
25-May-13added to CADdys
15-May-13JH Mater added to CADdys
15-May-13Cydney Medford added to CADdys
8-May-13Carol Severin added to CADdys
27-Mar-13Donald Bowman has updated his story
22-Mar-13Warning on the use of Procrit, Epogen, and Aranesp added to the Treatment Options page
20-Mar-13Andrea Tulenko-Catlin added to CADdys
19-Mar-13Rochelle Buckley has added her Dad, Bob Porter, to CADdys
16-Feb-13Bill Masters added to CADdys
13-Feb-13Natalie Sinclair added to CADdys
7-Jan-13Karen S has updated her story
4-Jan-13Fred Hartman added to CADdys and Stories
30-Nov-12Doreen Thompson added to CADdys
29-Nov-12Advice on Inoculations and Vaccinations added to the Managing CAD page
22-Nov-12Annegret Winsor has expanded her Story
20-Nov-12Lauretta Kurek added to CADdys and Stories
4-Nov-12Myron Wellan added to CADdys
20-Sep-12Handling of Blood Specimens per Dr. Sigbjorn Berentsen added to Managing CAD. This explains the procedures to be followed for CADdy blood tests.
30-Aug-12Dorothy Ingerson has updated her Story
22-Aug-12Holly & Laing Stevens added to CADdys
8-Aug-12Martha B added to CADdys
31-Jul-12Harry Hogan added to CADdys
29-Jul-12Karen Sperduti added to CADdys and Stories
22-Jul-12A tip on Cayenne Pepper capsules added to Managing CAD
22-Jul-12Maurice Reynolds added to CADdys
17-Jul-12William (Bill) Pennell added to CADdys
17-Jul-12Tony Murray-Smith added to CADdys
13-Jul-12Jackie Blake added to CADdys
4-Jul-12Julia McAnelly added to CADdys
4-Jul-12Sylvia Allinger added to CADdys
27-Jun-12Pam Domian added to CADdys
26-Jun-12Catherine Tokich added to CADdys
26-Jun-12George Elenbaas added to CADdys
26-Jun-12Julia added to CADdys
19-Jun-12Kathy Cary added to CADdys
24-Apr-12Kristie added to CADdys and Stories
11-Apr-12Rituximab should not be warmed or heated but should be infused at room temperature. For further information, see Rituximab Page.
23-Mar-12CADdy Chatter is a Facebook group you can join. This has been added to the Home page.
13-Mar-12Dr Sigbjorn Berentsen has written an article "HOW I MANAGE COLD AGGLUTININ DISEASE" published in the May 2011 issue of British Journal of Haematology. Please see the Links page for details.
13-Mar-12Update added to Barbara Sparks' story
5-Mar-12Anne W added to CADdys
1-Mar-12Warm Heart Surgery for those with Cold Agglutinin Disease added to the Links page.
24-Feb-12From the children in Mrs Kennedy's Classroom we have two new Links on Blood.
25-Jan-12Update added to Chris Morgan's story
29-Nov-11Jena Kerns added to CADdys
8-Nov-11Beverley Walker added to CADdys and Stories
10-Oct-11Elsa Woodaman added to CADdys and Stories
7-Oct-11Jean Eames added to CADdys
21-Sep-11Dee R. added to CADdys
7-Aug-11Katherine Bass added to CADdys
24-Jul-11Paul Schindler added to CADdys and Stories
20-Jun-11Mr Leslie Chrol-Frolowicz added to CAddys
15-May-11Penny James added to CADdys
6-May-11Laraine Aitken added to CADdys and Stories
4-Apr-11Darlene Strand added to CADdys and Stories
4-Mar-11Noel daCosta added to CADdys and Stories
2-Feb-11Laurie Riffle has changed her email address to Click here to send an email
27-Jan-11Danielle Edwards added to CADdys and Stories
1-Nov-10Barb Simon added to CADdys and Stories
18-Oct-10Øivind Bjørkås added to CADdys
18-Oct-10Barb Johnson has reverted to her maiden name, Barbara Plavecsky
14-Oct-10Marta Loppery (Canary Islands) is wanting to correspond with a CADdy who can speak Spanish. Marta is on our CADdys page.
12-Oct-10Cathy Burgett added to CADdys
26-Sep-10Roger Hudson added to CADdys
9-Aug-10Our Links page has been updated to remove outdated links, and add new ones.
9-Aug-10Keith Woods added to CADdys
4-Aug-10Published 2010 - Newly completed study by Dr Sigbjorn Berentsen et al from Norway. “High response rate and durable remissions following fludarabine and rituximab combination therapy for chronic cold agglutinin disease." This report can be downloaded from our Links page.
 Also see our comments on the Treatment Options page
10-Jul-10Laurie Riffle has added good news to her story
21-Jun-10Jane Doe added to CADdys and Stories
11-May-10Dorothy Ingerson added to CADdys and Stories
11-May-10Patricia Bradley added to CADdys
9-May-10Marta Loppery added to CADdys and Stories
9-May-10Betty Usdan has updated her story
8-May-10Annegret Winsor added to CADdys and Stories
8-May-10Chris Morgan's story updated
8-May-10James Rockwell added to CADdys
8-May-10Evelyn Korkmaz added to CADdys
5-Apr-10Kevin Sidle has an 8 year old daughter with CAD, and would like to contact anyone else who has a child with CAD. Contact Kevin at Click here to send an email
1-Apr-10Chris Morgan added to CADdys and Stories
16-Mar-10Madeline Krenek added to CADdys
18-Feb-10Dennis Fotopoulos added to CADdys and Stories
11-Feb-10Judy Filipich added to CADdys and Stories
11-Feb-10Graeme Hore has added an update to his story
23-Jan-10Barbara & Jay Jablonski added to CADdys and Stories
11-Jan-10Joni Gerking added to CADdys
30-Dec-09Juhi Nelson added to CADdys
22-Dec-09Donald Bowman added to CADdys and Stories
8-Dec-09Barbara Sparks added to CADdys and Stories
2-Dec-09Lesley Clark added to CADdys
20-Nov-09We've been requested to post the following clinical trial but WE DO NOT ENDORSE THE USE OF THIS DRUG FOR CAD.
For Cold Agglutinin Disease patients in Germany, Dr. Alexander Roth, Dept of Hematology, University Hospital Essen, Germany is planning a clinical trial, (DECADE Trial), starting the beginning of 2010 in centers in Germany using eculizumab for the treatment of CAD. Contact: Click here to send an email
5-Nov-09Judith Desfosses added to CADdys
14-Sep-09Joanne Scott added to CADdys
7-Aug-09Ruth Ann Ryan added to CADdys and Stories
6-Aug-09Peter DeNardis added to CADdys
4-Aug-09Lael Van Riper added to CADdys and Stories
24-Jul-09Some CADdys have Waldenstr?m Macroglobulinemia, a malignant disorder of the blood closely related to Lymphoma, so we have added two valuable links. We have been linked on their sites as well.
Bing Center for Waldenstrom's Research, Dana Farber/Harvard Cancer Center
Waldenstrom's Macroglobulinemia
16-Jun-09Mary Puckett added to CADdys
31-Mar-09Menna Edwards added to CADdys
11-Mar-09Valerie Debaix added to CADdys and Stories
2-Feb-09Jan Rudsenske added to CADdys
26-Jan-09Information from a CADdy has been added to the Cold Agglutinin Disease is currently the second to last paragraph.
26-Jan-09Jose Silva added to CADdys
22-Jan-09Links to two recent articles have been added to the links page.
Rituximab-How it Works and Why Resistance Occurs New Anti-CD20 Monoclonal Antibodies
15-Jan-09Hilary G. Derby added to CADdys
1-Jan-09Judith Hubbard added to Stories & CADdys
18-Dec-08Mary Stearn added to CADdys
5-Dec-08Roberta Franklin added to Stories
3-Dec-08Pamela Bedford added to Stories & CADdys
5-Nov-08Steve Hearne added to Stories & CADdys
5-Nov-08Joe Sergio added to Stories & CADdys
29-Oct-08Roberta Franklin added to Stories & CADdys
10-Oct-08June Davidson added to CADdys
3-Sep-08Barbara Southall added to Stories & CADdys
23-Aug-08Rosa Raveneau added to CADdys
25-Jul-08Mary Lou Lydecker added to Stories & CADdys
3-Jun-08Rod Coomer added to Stories & CADdys
3-May-08Mogamat Cassiem Samaai added to CADdys
20-Apr-08Carol Vanchina added to CADdys
21-Mar-08Barbara Johnson added to Stories
11-Mar-08Roberta Franklin added to CADdys
4-Mar-08Steve Hearn added to CADdys
28-Feb-08Heather Orr has updated her Story
12-Feb-08Inge Andersen added to Stories & CADdys
5-Feb-08Lauren Kenny added to CADdys
31-Jan-08Tom Kiedrowski added to CADdys
24-Jan-08Laurie Riffle updated her story regarding her experience with a supplement
17-Jan-08Barb Johnson added to CADdys
11-Jan-08Shari Thomas added to CADdys Gloria Storey added to Stories
7-Jan-08Cécile POIRRIER-GUILMIN added to Stories and CADdys Rosie Sherman added to CADdys Gim Ho Thio added to CADdys
6-Dec-07Changes made to Links, Treatment Options, Cold Agglutinin Disease, Managing CAD, and Rituximab pages to bring them up to date with current knowledge.
20-Nov-07Janice Frishkopf added to Stories & CADdys
23-Oct-07Two newly published articles on CAD by Norway Researchers:
Primary CAD - an update by Sigbjørn Berentsen, Klaus Beiske, & Geir E, Tjonnfjord
B Lymphocytes as targets Sigbjørn Berentsen, Elling Ulvestad, & Geir E, Tjonnfjord
Go to the Links page to view these reports.
14-Oct-07Rebekah Marshall added to CADdys
14-Sep-07Ann Close added to Stories & CADdys
29-Aug-07Nina Tartakoff added to Stories & CADdys
15-Aug-07Recent Additions page added

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