Serving Madison, Southern Wisconsin and the greater multiple myeloma community
"Providing an opportunity for multiple myeloma patients
and their loved ones to
come together to exchange information for mutual support, comfort, and friendship"
Multiple myeloma is the second most common blood cancer, and is considered a cancer of the immune system. It is currently considered incurable but is treatable. Multiple myeloma accounts for less than one percent of all cancers. If you are new to understanding multiple myeloma, it may be helpful for you to start with the links in the left column.
Note that multiple myeloma is very individual, and patients should discuss any changes with their physician. The information provided in this Web site is for educational purposes only.
Overview |
History |
Detecting |
Stages |
Testing |
Treating |
Funding Treatments |
Clinical Trials |
At Home: Things To Do |
Caregiver |
Blogs |
Portable Medical History |
Questions, or to receive information Email Jayne at: schwartzdon@sbcglobal.net |
Please join us at one of our regular meetings or join the mailing list for our free monthly newsletter. Family members and friends are encouraged to participate as well. You will quickly find out you are not alone. We will help keep you informed of the latest Multiple Myeloma management information.
Next Meeting
Our meeting for March 19, 2024 will be from 3:30pm to 5:30pm.
Brittany Hartmann, MMRF Patient Navigator will present at the March 19
meeting. Her topic will be Patient Navigators. Mark your calendar now not
to miss this meeting. Presentation start time is still to be determined.
See the current newsletter for information about:
- Follow up information from the Leukemia, Lymphoma Society (LLS).
Here is the link to Advocacy Page where you can sign up to be an advocate: https://www.lls.org/policy-advocacy - Save the Date: Madison Light The Night October 10th, 2024 Henry Vilas Zoo https://ltn.stg.lls.org/upln
- Here is the phone number for the Information Resource Center: (800)
955-4572. Christina did reach out to the Financial Assistance team about
the change from 12K to 5K in funding for CoPay and they gave her a similar
response to what someone mentioned at the last meeting. They said they
have had such a surge of families coming to LLS for Support that the funds
were being depleted too fast and they changed the limit to accommodate
more families.
- There is a new booklet that you can order or download from the IMF
Educational site. Easy to take with you to appointments.
Multiple Myeloma Glossary of Terms and Definitions
Myeloma is a complicated disease, but the language that describes it doesn’t have to be hard to understand. To play an active role in your own medical care, it is helpful to learn the myeloma-related terms that may be used in your discussions with your doctor, who is best able to answer questions about your specific healthcare management plan.
Current newsletter (PDF)
Upcoming Meeting Speakers:
- Working on getting Dr Aric Hall, UW Carbone Cancer Center for the April
16, 2024 meeting.
- Working on getting Dr Zhubin Gahvari, UW Carbone Cancer Center for
the May 21, 2024 meeting. Hoping to get his presentation on Relapsed Myeloma
that he shared with us at the recent Multiple Myeloma Research and Patient
Care event. The Trillium Research update held October 30th.
- Tom Vodicka will be our featured speaker for either the June 18th or July 16th meeting. Date to be determined later. Tom was our featured speaker at the December 2023 meeting. Tom will continue with his topic of “Life and Wills”.
Upcoming Teleconferences or Webinars
None
Madison Multiple Myeloma Support Group monthly meeting
Please join the meeting from your computer, tablet or smartphone.
Zoom
Our virtual meetings are on the Zoom platform.
Download (free) the Zoom software here (or for various devices here)
Zoom support center for help using Zoom
Madison Myeloma Support Group Zoom Meeting
Meeting times will be in the newsletter as these Zoom invitations will be a reoccurring meeting format.
IMF SG Meeting Room 3 is inviting you to a scheduled Zoom meeting.
Topic: Madison, WI SG 3rd Tue Monthly
Time: This is a recurring meeting Meet anytime
Click to Join Zoom Meeting
Link for above if needed (https://myeloma-org.zoom.us/j/84457667535?pwd=V0lJTDNQU2FOZ1hMUkFaRmJBc0Qzdz09)
Meeting ID: 844 5766 7535
Passcode: 678275
One tap mobile
+13017158592,,84457667535#,,,,*678275# US (Washington DC)
+13126266799,,84457667535#,,,,*678275# US (Chicago)
Find your local number: https://myeloma-org.zoom.us/u/kyMbCRs05
Meeting Time: Third Tuesday of Each Month
3:30 – 5:30 PM
Location: Online via Zoom
For more information:
Jayne Schwartz schwartzdon@sbcglobal.net
or
608-244-2120
International Myeloma Foundation (IMF)
Leukemia & Lymphoma Society® (LLS)
Multiple Myeloma Research Foundation (MMRF)
Smart Patients
Forum (ask questions of the group)
Sign up for the Multiple Myeloma group
Advocacy
Donate
Trillium Fund (University of Wisconsin)
The Trillium Fund was established by our founding support group members to facilitate Multiple Myeloma research here in Madison at the Wisconsin Institute of Medical Research.
If you or your family wish to donate or send a memorial to this program, checks can be made payable to the “UW Foundation – Trillium Fund” and sent to:
UW Carbone Cancer Center,
University of Wisconsin Foundation,
1848 University Ave,
Madison, WI 53726.
Donations may also be made online at:
www.supportuw.org/give
(Trillium Fund in Multiple Myeloma Research – 112903576).
For any questions, please call Janie Winston, at 608-512-6068 or her email: Janie.Winston@supportuw.org
or curecancer@supportuw.org .
Black Swan Research Initiative
Donate
Leukemia & Lymphoma Society
Donate