HOUSTON AREA MULTIPLE MYELOMA SUPPORT GROUP

HOMEPAGE

 

 

Monthly Meetings:

3rd Saturday monthly @ American Cancer Society (ACS)

                                                6301 Richmond (between Hillcroft and Fountainview)

 

2004 Meeting Schedule:

                                                January 17

                                                February 21

                                                March 20

                                                April 17

                                                May 15

                                                June 19

                                                July 17

                                                August 21

                                                September 18

                                                October 16

                                                November 20

                                                December 18

 

Mission Statement:

The Houston Area MM Support Group consists of volunteer efforts to provide a caring, safe, & supportive environment for patients & family from initial diagnosis through on-going treatment.

 

Support Group Leader:    Norma Jones (713-436-0313) or normahjones@sbcglobal.net

 

 

Monthly Newsletters:       

June                2004 MM Newsletter             (click here)

May                 2004 MM Newsletter             (click here)

April                2004 MM Newsletter             (click here)

March              2004 MM Newsletter            (click here)

February         2004 MM Newsletter            (click here)

January           2004 MM Newsletter            (click here)

2003 Newsletters                                          (click here)

 

Newest news links and tips:

  • 04/24/2004  Recent;ly published Dental Journal Article (2204 American Association of Oral and Maxillofacial Surgeons) linking Bisphosphonates (Aredia and Zometa) to bone loss, especially in the upper jaw, resulting in tooth loss.  The article is entitled:

  • "Osteonecrosis of the Jaws Associated With the Use of Bisphosphonates:  A review of 63 Cases" (click here)

The study was done by the Long Island Jewish Medical Center (New York) and The University of Maryland.

·         Presentation slides (52 in Adobe Acrobat format) from the Houston Area Multiple Myeloma Support Group Meeting in August 2003!

Dr. Aggarwal, lead researcher at M.D. Anderson Cancer Center, shares information on a natural curry spice research project:  “How TUMERIC-CURCUMIN May Help Suppress & Destroy the Blood Cancer MM”. 

(You may have to minimize to see slides on background screen.)

 

·         VELCADE is approved by FDA for Relapsed and Refractory Myeloma (May 14, 2003)

 

·         The American Cancer Society (ACS) provides their building in Houston for monthly meetings and supplies beverages.  The consistency for newly diagnosed with Multiple Myeloma, who know “nothing” or “nearly nothing” about MM find these monthly meetings at ACS (never cancelled) as a lifeline to new friends and understanding of what is happening to them.

 

·         Have your found http://www.acor.org/ (Association of Cancer Online resources)?  This webisite provides interactive internet chats.  All cancer types are listed there, but you can sign up for just the specific cancer you are interested in receiving current e-mails on.  I chose “Mailing Lists”, then the letter M to sign up for Multiple Myeloma e-mails only.  Paged down to Multiple Myeloma (1191 subscribers) and “clicked” to add myself, meaning I can received from others on the list and am free to respond (to one or all on list) or ignore (delete) if they do not interest me.   People often call the support group asking for a contact who has experienced various drug treatments, responses, shingles, neuropathy, latest treatments available and where (different facilities offer different things), insurance coverage (which are different for different carriers), VA benefits, SSA benefits, national and international doctors and facilities, and patient experiences.  Support groups are usually small, and some of the info is out-dated (STC 3 years ago and differing protocols), and then patient MM type and important makers for that type make patient comparisons sot always accurate (apples vs. oranges).  ACOR helps to access specific and more current information quickly (and has an search archive so you can pull up messages for only VELCADE discussions, and you can talk to 25 VELCADE stories instead of just 2 people in your support group who are aware of it or have had an experience with it.

TRY IT --- YOU MIGHT LIKE IT!

 

Have you heard about “CURCUMIN”?  It gives mustard and tumeric their yellow color.  This is a natural chemical which is being researched at MDA  in the Cytokine Research Section in the Dept. of Bioimmunotherapy --- not associated with the MM clinic.  It is also being researched at Mayo and in Japan.  It shows possible future promise in MM, MS, and Alzheimers.  The curcumin was added to human cells, infected with MM, and the resulted in the Bad cancer cells failed to reproduce and died.  Remember that no studies have actually tested curcumin in cancer patients. 

Since the researcher is at MDA Nancy Whittington is trying to line him up as a guest speaker at one of our Support Group monthly Saturday meetings.  Patients are already buying the product at GNC, but we would like an expert opinion on dosing and using the product in conjunction with steroids, Thalidomide, chemo and other cancer drugs, although there are know known sie effects at this point.  So stay tuned!  And click here to check out the original notification from ACOR.      

 

·         Dana-Farber’s neuropathy meds regimen posted on web

 

See the Clinical Trials Monitor to see what’s available:  CTM

 

Multiple Myeloma Patient Support/Research/Education/Advocacy:

                                                IMF                  International Myeloma Foundation

                                                MMRF            Multiple Myeloma Research Foundation

                                                LLS                 Leukemia & Lymphoma Society (includes Myeloma)

                                                CanCare        (Cancer Care)  Cancer Support Network

                                                ACS                American Cancer Society

 

Websites for Multiple Myeloma facilities in the US

(for a link to these websites and others,  see Cancer Index – Cancer Centers & Institutes):

 

Cedar-Sinai Comprehensive Cancer Center (Los Angeles)

Cleveland Clinic Cancer Center

Dana-Farber Cancer Institute (Boston)

Fred Hutchinson Cancer Research Center (Seattle)

H. Lee Moffitt Cancer Center & Research Institute (Tampa)

Mayo Clinic (Arizona, Minnesota, Florida)

Memorial Sloan-Kettering Cancer Center (New York)

Robert H. Lurie Comprehensive Cancer Center of Northwestern University (Chicago)

University of Arkansas for Medical Sciences (UAMS):  Myeloma Institute 

University of Arkansas for Medical Sciences (UAMS):

Arkansas Cancer Research Center (ACRC)

                        University of Maryland Greenbaum Cancer Center

University of Texas M.D. Anderson Cancer Center (Houston)

Vanderbilt Cancer Center (Nashville)

 

For an index of links to all sorts of additional MM information, click here.

 

To help from home (advocacy) with extremely little effort on your part, click here.

 

 

Please ADD me to the distribution list:

(signify e-mail, regular mail, or both and provide addresses)  click here.

Please REMOVE me from the distribution list:

                                    (signify e-mail, regular mail, or both and provide name)  click here.

FEEDBACK/SUGGESTIONS for Webpage Improvement:  click here.

 

Webmaster:             Joan Butzke (281-437-6653) or bbutzke@houston.rr.com