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.

Important Announcement:

Hi CADdys,

Would you like to spend an hour participating in a fun research project? Give your input on material created specifically for the Cold Agglutinin community AND get paid for your time!

All you need is a Telephone, a Computer (not your smart phone) and the Internet. The team would love to have your input and think you will enjoy this fun study!

Please Contact: Carly McCormick at Evolution Consulting, Click here to send an email for more information.
Betty Usdan,
CAD Patient Advocate
Click here to send an email


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,

18-November-2017In 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
15-September-2017Nina updated her story of 2007
13-September-2017Albert updated his story of 2015
14-August-2017Notice re change to True North Therapeutics and their drugs added to Home Page
11-July-2017Ruth added to CADdys
30-May-17Jeannette added to CADdys
18-February-17David added to CADdys
7-November-2016Carole added to CADdys and Stories
8-September-2016Albert updated his story of 2015.
9-April-2016Frances added to CADdys and Stories
2-April-2016Rosella added to CADdys and Stories
25-February-2016Vicki 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 added to CADdys
28-December-15Marilyn added to CADdys
28-December-15Debra added to CADdys
27-December-15Eleanor added to CADdys
20-October-15Cliff added to CADdys
29-June-15Susan added to CADdys
25-June-15Graeme has updated his 2007 story.
25-June-15Øivind has updated his 2013 story.
20-June-15Michelle added to CADdys
16-June-15Evelyn added to CADdys
28-May-15 Theresa added to CADdys
15-Mar-15John added to CADdys
26-Feb-15Albert added to CADdys
12-Jan-15John added to CADdys and Stories
29-Dec-14Laurie 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 added to CADdys
4-May-14Mark added to CADdys
4-May-14Henriette added to CADdys
4-May-14Silvia added to CADdys
4-May-14Frances added to CADdys
8-Apr-14Kathleen added to CADdys
16-Mar-14Carole added to CADdys
9-Feb-14Recommendations on Australian footwear from Fred have been added to Managing CAD
9-Feb-14Linda added to CADdys
6-Feb-14Tina added to CADdys
6-Feb-14Pam added to CAddys
4-Feb-14Elaine 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 added to CADdys
9-Jan-14Craig added to CADdys and Stories
10-Dec-13David added to CADdys and Stories
29-Nov-13Joule added to CADdys
24-Nov-13Earle added to CADdys
15-Oct-13Stephanie added to CADdys
Our Rituximab Page has a link to the article.
21-Sep-13Art added to CADdys and Stories
15-Sep-13Rony added to CADdys
10-Sep-13Barry added to CADdys and Stories
3-Aug-13Eva added to CADdys
26-Jul-13Jeri added to CADdys and Stories
26-Jul-13Fred has updated his story
7-Jul-13Øivind 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 added to CADdys and Stories
25-May-13added to CADdys
15-May-13JH added to CADdys
15-May-13Cydney added to CADdys
8-May-13Carol added to CADdys
27-Mar-13Donald has updated his story
22-Mar-13Warning on the use of Procrit, Epogen, and Aranesp added to the Treatment Options page
20-Mar-13Andrea added to CADdys
19-Mar-13Rochelle has added her Dad, Bob Porter, to CADdys
16-Feb-13Bill added to CADdys
13-Feb-13Natalie added to CADdys
7-Jan-13Karen has updated her story
4-Jan-13Fred added to CADdys and Stories
30-Nov-12Doreen added to CADdys
29-Nov-12Advice on Inoculations and Vaccinations added to the Managing CAD page
22-Nov-12Annegret has expanded her Story
20-Nov-12Lauretta added to CADdys and Stories
4-Nov-12Myron 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 has updated her Story
22-Aug-12Holly & Laing added to CADdys
8-Aug-12Martha added to CADdys
31-Jul-12Harry added to CADdys
29-Jul-12Karen added to CADdys and Stories
22-Jul-12A tip on Cayenne Pepper capsules added to Managing CAD
22-Jul-12Maurice added to CADdys
17-Jul-12William added to CADdys
17-Jul-12Tony added to CADdys
13-Jul-12Jackie added to CADdys
4-Jul-12Julia added to CADdys
4-Jul-12Sylvia added to CADdys
27-Jun-12Pam added to CADdys
26-Jun-12Catherine added to CADdys
26-Jun-12George added to CADdys
26-Jun-12Julia added to CADdys
19-Jun-12Kathy 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's story
5-Mar-12Anne 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's story
29-Nov-11Jena added to CADdys
8-Nov-11Beverley added to CADdys and Stories
10-Oct-11Elsa added to CADdys and Stories
7-Oct-11Jean added to CADdys
21-Sep-11Dee added to CADdys
7-Aug-11Katherine added to CADdys
24-Jul-11Paul added to CADdys and Stories
20-Jun-11Leslie added to CAddys
15-May-11Penny added to CADdys
6-May-11Laraine added to CADdys and Stories
4-Apr-11Darlene added to CADdys and Stories
4-Mar-11Noel added to CADdys and Stories
2-Feb-11Laurie has changed her email address
27-Jan-11Danielle added to CADdys and Stories
1-Nov-10Barb added to CADdys and Stories
18-Oct-10Øivind added to CADdys
18-Oct-10Barb has reverted to her maiden name.
14-Oct-10Marta (Canary Islands) is wanting to correspond with a CADdy who can speak Spanish. Marta is on our CADdys page.
12-Oct-10Cathy added to CADdys
26-Sep-10Roger added to CADdys
9-Aug-10Our Links page has been updated to remove outdated links, and add new ones.
9-Aug-10Keith 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 has added good news to her story
21-Jun-10Jane added to CADdys and Stories
11-May-10Dorothy added to CADdys and Stories
11-May-10Patricia added to CADdys
9-May-10Marta added to CADdys and Stories
9-May-10Betty has updated her story
8-May-10Annegret added to CADdys and Stories
8-May-10Chris's story updated
8-May-10James added to CADdys
8-May-10Evelyn added to CADdys
5-Apr-10Kevin has an 8 year old daughter with CAD, and would like to contact anyone else who has a child with CAD.
1-Apr-10Chris added to CADdys and Stories
16-Mar-10Madeline added to CADdys
18-Feb-10Dennis added to CADdys and Stories
11-Feb-10Judy added to CADdys and Stories
11-Feb-10Graeme has added an update to his story
23-Jan-10Barbara & Jay added to CADdys and Stories
11-Jan-10Joni added to CADdys
30-Dec-09Juhi added to CADdys
22-Dec-09Donald added to CADdys and Stories
8-Dec-09Barbara added to CADdys and Stories
2-Dec-09Lesley 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 added to CADdys
14-Sep-09Joanne added to CADdys
7-Aug-09Ruth added to CADdys and Stories
6-Aug-09Peter added to CADdys
4-Aug-09Lael 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 added to CADdys
31-Mar-09Menna added to CADdys
11-Mar-09Valerie added to CADdys and Stories
2-Feb-09Jan 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 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 added to CADdys
1-Jan-09Judith added to Stories & CADdys
18-Dec-08Mary added to CADdys
5-Dec-08Roberta added to Stories
3-Dec-08Pamela added to Stories & CADdys
5-Nov-08Steve added to Stories & CADdys
5-Nov-08Joe added to Stories & CADdys
29-Oct-08Roberta added to Stories & CADdys
10-Oct-08June added to CADdys
3-Sep-08Barbara added to Stories & CADdys
23-Aug-08Rosa added to CADdys
25-Jul-08Mary Lou added to Stories & CADdys
3-Jun-08Rod added to Stories & CADdys
3-May-08Mogamat added to CADdys
20-Apr-08Carol added to CADdys
21-Mar-08Barbara added to Stories
11-Mar-08Roberta added to CADdys
4-Mar-08Steve added to CADdys
28-Feb-08Heather has updated her Story
12-Feb-08Inge added to Stories & CADdys
5-Feb-08Lauren added to CADdys
31-Jan-08Tom added to CADdys
24-Jan-08Laurie updated her story regarding her experience with a supplement
17-Jan-08Barb added to CADdys
11-Jan-08Shari added to CADdys Gloria Storey added to Stories
7-Jan-08Cécile added to Stories and CADdys, Rosie added to CADdys. Gim 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 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 added to CADdys
14-Sep-07Ann added to Stories & CADdys
29-Aug-07Nina added to Stories & CADdys
15-Aug-07Recent Additions page added

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