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.
|At Home: Things To Do|
|Portable Medical History|
or to receive information
Email Jayne at:
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.
The next meeting will be on Tuesday January 21, 2020
3:30 PM – 5:30 PM
Cameron Ninos from the UW Cancer Pharmacy is our January meeting speaker.
He will not be speaking to the “cost” of medications but will
do a Q & A for other questions. I have forwarded some questions in advance.
This will help him prepare to get the conversation started. He will be here
Current newsletter, (PDF)
See the current newsletter for:
- Can Bone lesions progress when all other tests look good?
- Fatigue..... one the most common complaints. Have you ever had a tough
time explaining how
your feel to your loved ones?
- Some group members were asking about “Chemo Brain”. Here
is a link
to a segment that the IMF did on this subject. Segment was produced October
Multiple Myeloma Symposium Files (PowerPoint, others)
A Message from Froedtert and the Medical College of Wisconsin Cancer Center:
Just a quick note to let you know that the presentations from this year's Multiple Myeloma symposium have been posted and are available for viewing/download. Many of the files are too large to email so please visit this link to access the files.
We look forward to seeing you at the 2020 event! Save the date: 9/19/20!
Upcoming Meeting Speakers…
- Dr Aric Hall will be our featured speaker for the March meeting. He will do a Q & A session starting at 4:30pm.
From the IMF website....
Multiple myeloma drugs fall into various drug classes, proteasome inhibitors (PIs), immunomodulatory drugs (IMiDs), alkylating agents, corticosteriods, histone deactylase inhibitors (HDACs), bisphophonates, and monoclonal antibodies (MAbs).
The PROMISE Study
The PROMISE Study is a collaborative research project screening individuals at higher risk for multiple myeloma.
New Fact Sheet Available from LLS
This new fact sheet provides information for patients and their families about minimal residual disease (MRD), which refers to the small number of cancer cells that remain in the body after treatment.
Click here to download the PDF or order a free copy.
From the LLS Patient Education Team
None currently listed
Upcoming Teleconferences or Webinars
The next “Living Well with Myeloma” Teleconference will focus on approaches to relapsed myeloma. IMF Chairman of the Board Dr. Brian G.M. Durie will discuss:
- What treatments you should consider if your myeloma has relapsed, with a focus on the latest FDA-approved drugs.
- How to individualize treatment based on a patient’s prior therapies, the length of the onset of relapse, FiSH genetic-risk status, age, and frailty score.
- The latest clinical trials, in particular immune therapies.
Thursday, October 10, 2019
6PM Central Time
Duration: 60 Minutes (Includes Q&A)
Click here to register
Multiple Myeloma or Cancer News
News... (Upcoming teleconferences are listed below)
Brand new booklet
from the IMF Educational Series.... Understanding
Peripheral Neuropathy in Myeloma. This can be viewed online and is very
well written. Very comprehensive and will expand what you may already know
about this subject. Bet you didn't know about “Pickle Juice”?
Our group member, Bashir Nasserjah will be doing “The Ride”, Sunday, September 22, 2019 Madison, WI. To support him and all the riders, go to www.theridewi.org. This ride fundraiser will support the cancer research at the UW-Madison.
Our group member, Georgia passes along this information about a class that she has joined.
I have just started a “Strong Bone” class and I love it! It meets at our village hall in McFarland. It really works ALL of your muscles and is good for balance. The leader had a change in her bone density and started this class. It is actually fun and it is for men and women. There is music and laughter and so much easier to exercise with others. The hour goes by quickly and it's a good feeling mentally. I had tried it out before transplant with another instructor and loved it. After transplant, still love it! Highly recommend it to all.
Attached to the January email: Time to talk about Multiple Myeloma
Please see the December, 2018 newsletter for news about approval of a new drug therapy (EPd) for treatment of relapsed or refractory myeloma in patients who have received at least two prior therapies
MMRF introduces MyDRUG (Myeloma – Developing Regimens Using Genomics) clinical trial. (More in the December, 2018 newsletter)
Success and Celebrations
Matt Howard took first place in the Driftless 50K Trail Race.
Bashir Nasserjah participated in "The Ride", benefiting The UW Carbone Cancer Center.
Meeting Time: Third Tuesday of Each Month
3:30 – 5:30 PM
UW West Clinic
451 Junction Road
Conference room 1287
Program: In general, speakers every second
month, group discussion alternate months
For more information:
Jayne Schwartz firstname.lastname@example.org
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:
(Trillium Fund in Multiple Myeloma Research – 112903576).
For any questions, please call (608) 264-5437 or email email@example.com
Leukemia & Lymphoma Society