Below we have provided a list of significant changes to the site. We hope this will assist you in keeping up-to-date.
In order to protect your privacy since there have been unsolicited contacts, we have now cancelled our CADdy List. If you have or a family member has Cold or Warm Agglutinin Disease, please ask to join our group, CADdy CHATTER, on Facebook.com
18-November-2017 In order to protect your privacy since there have been unsolicited contacts, we have now concealed our CADdy List. If you have or a family member has Cold or Warm Agglutinin Disease, please ask to join our group, CADdy CHATTER, on Facebook.com
15-September-2017 Nina updated her story of 2007
13-September-2017 Albert updated his story of 2015
14-August-2017 Notice re change to True North Therapeutics and their drugs added to Home Page
11-July-2017 Ruth added to CADdys
30-May-17 Jeannette added to CADdys
18-February-17 David added to CADdys
7-November-2016 Carole added to CADdys and Stories
8-September-2016 Albert updated his story of 2015.
9-April-2016 Frances added to CADdys and Stories
2-April-2016 Rosella added to CADdys and Stories
25-February-2016 Vicki added to CADdys and Stories
9-February-2016 Two new Links to Other Sites and Articles added - 2014 and 2015 (both from True North Therapeutics, San Francisco)
4-February-2016 New True North Therapeutics Project - see note on Home Page
7-January-2016 Marty added to CADdys
28-December-15 Marilyn added to CADdys
28-December-15 Debra added to CADdys
27-December-15 Eleanor added to CADdys
20-October-15 Cliff added to CADdys
29-June-15 Susan added to CADdys
25-June-15 Graeme has updated his 2007 story.
25-June-15 Øivind has updated his 2013 story.
20-June-15 Michelle added to CADdys
16-June-15 Evelyn added to CADdys
28-May-15 Theresa added to CADdys
15-Mar-15 John added to CADdys
26-Feb-15 Albert added to CADdys
12-Jan-15 John added to CADdys and Stories
29-Dec-14 Laurie has updated her story.
19-Nov-14 New Drugs for B-Cell Diseases
THE FOLLOWING IS FOR INFORMATION ONLY!!!
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-14 Ron added to CADdys
4-May-14 Mark added to CADdys
4-May-14 Henriette added to CADdys
4-May-14 Silvia added to CADdys
4-May-14 Frances added to CADdys
8-Apr-14 Kathleen added to CADdys
16-Mar-14 Carole added to CADdys
9-Feb-14 Recommendations on Australian footwear from Fred have been added to Managing CAD
9-Feb-14 Linda added to CADdys
6-Feb-14 Tina added to CADdys
6-Feb-14 Pam added to CAddys
4-Feb-14 Elaine added to CADdys
4-Feb-14 TNT009, a Classical Complement Pathway Specific Inhibitor, Prevents Complement Dependent Hemolysis Induced By Cold Agglutinin Disease Patient Autoantibodies added to Links
30-Jan-14 TNT009, a Classical Complement Pathway Specific Inhibitor, Prevents Complement Dependent Hemolysis Induced By Cold Agglutinin Disease Patient Autoantibodies - added to Links
9-Jan-14 Maureen added to CADdys
9-Jan-14 Craig added to CADdys and Stories
10-Dec-13 David added to CADdys and Stories
29-Nov-13 Joule added to CADdys
24-Nov-13 Earle added to CADdys
15-Oct-13 Stephanie added to CADdys
25-Sep-13 ----US FDA ISSUES BLACK BOXED WARNING TO RITUXAN AND OFATUMUMAB REGARDING POSSIBLE HEPATITIS B VIRUS REACTIVATION
Our Rituximab Page has a link to the article.
21-Sep-13 Art added to CADdys and Stories
15-Sep-13 Rony added to CADdys
10-Sep-13 Barry added to CADdys and Stories
3-Aug-13 Eva added to CADdys
26-Jul-13 Jeri added to CADdys and Stories
26-Jul-13 Fred has updated his story
7-Jul-13 Øivind added to CADdys and Stories
25-Jun-13 On the Home page, there are details on how you can take part in a research study for Cold Agglutinin Disease....Betty Usdan.
22-Jun-13 Marla added to CADdys and Stories
25-May-13 added to CADdys
15-May-13 JH added to CADdys
15-May-13 Cydney added to CADdys
8-May-13 Carol added to CADdys
27-Mar-13 Donald has updated his story
22-Mar-13 Warning on the use of Procrit, Epogen, and Aranesp added to the Treatment Options page
20-Mar-13 Andrea added to CADdys
19-Mar-13 Rochelle has added her Dad, Bob Porter, to CADdys
16-Feb-13 Bill added to CADdys
13-Feb-13 Natalie added to CADdys
7-Jan-13 Karen has updated her story
4-Jan-13 Fred added to CADdys and Stories
30-Nov-12 Doreen added to CADdys
29-Nov-12 Advice on Inoculations and Vaccinations added to the Managing CAD page
22-Nov-12 Annegret has expanded her Story
20-Nov-12 Lauretta added to CADdys and Stories
4-Nov-12 Myron added to CADdys
20-Sep-12 Handling of Blood Specimens per Dr. Sigbjorn Berentsen added to Managing CAD. This explains the procedures to be followed for CADdy blood tests.
30-Aug-12 Dorothy has updated her Story
22-Aug-12 Holly & Laing added to CADdys
8-Aug-12 Martha added to CADdys
31-Jul-12 Harry added to CADdys
29-Jul-12 Karen added to CADdys and Stories
22-Jul-12 A tip on Cayenne Pepper capsules added to Managing CAD
22-Jul-12 Maurice added to CADdys
17-Jul-12 William added to CADdys
17-Jul-12 Tony added to CADdys
13-Jul-12 Jackie added to CADdys
4-Jul-12 Julia added to CADdys
4-Jul-12 Sylvia added to CADdys
27-Jun-12 Pam added to CADdys
26-Jun-12 Catherine added to CADdys
26-Jun-12 George added to CADdys
26-Jun-12 Julia added to CADdys
19-Jun-12 Kathy added to CADdys
24-Apr-12 Kristie added to CADdys and Stories
11-Apr-12 Rituximab should not be warmed or heated but should be infused at room temperature. For further information, see Rituximab Page.
23-Mar-12 CADdy Chatter is a Facebook group you can join. This has been added to the Home page.
13-Mar-12 Dr 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-12 Update added to Barbara Sparks' story
5-Mar-12 Anne added to CADdys
1-Mar-12 Warm Heart Surgery for those with Cold Agglutinin Disease added to the Links page.
24-Feb-12 From the children in Mrs Kennedy's Classroom we have two new Links on Blood.
25-Jan-12 Update added to Chris's story
29-Nov-11 Jena added to CADdys
8-Nov-11 Beverley added to CADdys and Stories
10-Oct-11 Elsa added to CADdys and Stories
7-Oct-11 Jean added to CADdys
21-Sep-11 Dee added to CADdys
7-Aug-11 Katherine added to CADdys
24-Jul-11 Paul added to CADdys and Stories
20-Jun-11 Leslie added to CAddys
15-May-11 Penny added to CADdys
6-May-11 Laraine added to CADdys and Stories
4-Apr-11 Darlene added to CADdys and Stories
4-Mar-11 Noel added to CADdys and Stories
2-Feb-11 Laurie has changed her email address
27-Jan-11 Danielle added to CADdys and Stories
1-Nov-10 Barb added to CADdys and Stories
18-Oct-10 Øivind added to CADdys
18-Oct-10 Barb has reverted to her maiden name, Barbara Plavecsky
14-Oct-10 Marta (Canary Islands) is wanting to correspond with a CADdy who can speak Spanish. Marta is on our CADdys page.
12-Oct-10 Cathy added to CADdys
26-Sep-10 Roger added to CADdys
9-Aug-10 Our Links page has been updated to remove outdated links, and add new ones.
9-Aug-10 Keith added to CADdys
4-Aug-10 Published 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-10 Laurie has added good news to her story
21-Jun-10 Jane added to CADdys and Stories
11-May-10 Dorothy added to CADdys and Stories
11-May-10 Patricia added to CADdys
9-May-10 Marta added to CADdys and Stories
9-May-10 Betty has updated her story
8-May-10 Annegret added to CADdys and Stories
8-May-10 Chris's story updated
8-May-10 James added to CADdys
8-May-10 Evelyn added to CADdys
5-Apr-10 Kevin has an 8 year old daughter with CAD, and would like to contact anyone else who has a child with CAD.
1-Apr-10 Chris added to CADdys and Stories
16-Mar-10 Madeline added to CADdys
18-Feb-10 Dennis added to CADdys and Stories
11-Feb-10 Judy added to CADdys and Stories
11-Feb-10 Graeme has added an update to his story
23-Jan-10 Barbara & Jay added to CADdys and Stories
11-Jan-10 Joni added to CADdys
30-Dec-09 Juhi added to CADdys
22-Dec-09 Donald added to CADdys and Stories
8-Dec-09 Barbara added to CADdys and Stories
2-Dec-09 Lesley added to CADdys
20-Nov-09 We'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-09 Judith added to CADdys
14-Sep-09 Joanne added to CADdys
7-Aug-09 Ruth added to CADdys and Stories
6-Aug-09 Peter added to CADdys
4-Aug-09 Lael added to CADdys and Stories
24-Jul-09 Some 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 http://www.wmprogram.org/Links/Default.asp
Waldenstrom's Macroglobulinemia http://www.stevenptreon.com/links.htm
16-Jun-09 Mary added to CADdys
31-Mar-09 Menna added to CADdys
11-Mar-09 Valerie added to CADdys and Stories
2-Feb-09 Jan added to CADdys
26-Jan-09 Information from a CADdy has been added to the Cold Agglutinin Disease page...it is currently the second to last paragraph.
26-Jan-09 Jose added to CADdys
22-Jan-09 Links 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-09 Hilary added to CADdys
1-Jan-09 Judith added to Stories & CADdys
18-Dec-08 Mary added to CADdys
5-Dec-08 Roberta added to Stories
3-Dec-08 Pamela added to Stories & CADdys
5-Nov-08 Steve added to Stories & CADdys
5-Nov-08 Joe added to Stories & CADdys
29-Oct-08 Roberta added to Stories & CADdys
10-Oct-08 June added to CADdys
3-Sep-08 Barbara added to Stories & CADdys
23-Aug-08 Rosa added to CADdys
25-Jul-08 Mary Lou added to Stories & CADdys
3-Jun-08 Rod added to Stories & CADdys
3-May-08 Mogamat added to CADdys
20-Apr-08 Carol added to CADdys
21-Mar-08 Barbara added to Stories
11-Mar-08 Roberta added to CADdys
4-Mar-08 Steve added to CADdys
28-Feb-08 Heather has updated her Story
12-Feb-08 Inge added to Stories & CADdys
5-Feb-08 Lauren added to CADdys
31-Jan-08 Tom added to CADdys
24-Jan-08 Laurie updated her story regarding her experience with a supplement
17-Jan-08 Barb added to CADdys
11-Jan-08 Shari added to CADdys Gloria Storey added to Stories
7-Jan-08 Cécile added to Stories and CADdys, Rosie added to CADdys. Gim added to CADdys
6-Dec-07 Changes made to Links, Treatment Options, Cold Agglutinin Disease, Managing CAD, and Rituximab pages to bring them up to date with current knowledge.
20-Nov-07 Janice added to Stories & CADdys
23-Oct-07 Two newly published articles on CAD by Norway Researchers:
Primary CAD - an update by Sigbjørn Berentsen, Klaus Beiske, & Geir E, Tjonnfjord
B Lymphocytes as targets .....by Sigbjørn Berentsen, Elling Ulvestad, & Geir E, Tjonnfjord
Go to the Links page to view these reports.
14-Oct-07 Rebekah added to CADdys
14-Sep-07 Ann added to Stories & CADdys
29-Aug-07 Nina added to Stories & CADdys
15-Aug-07 Recent Additions page added