Twin Cities Support Group

Methodist Hospital in Saint Louis Park, Minnesota

The Twin Cities Support Group meets on the second Saturday of each month
from 10:00 am to 12:00 noon in the Heart & Vascular Center Conference Area at Park Nicollet Methodist Hospital
6500 Excelsior Blvd.
Saint Louis Park, MN
(Park in the Blue Ramp at the front of the hospital,
take the elevator or stairs down to the Ground Floor the conference room is behind the divider, across the hall from the large staircase.)

Following are our upcoming meeting dates and agendas.
Open Discussion refers to meetings where we share questions, news, stories, and topics for discussion.  Almost all meetings have a Open Discussion period and most have guest speakers.

We look forward to having you join us.


Special Notice: Take Our Survey
We’re already planning our topics and speakers for 2019 and we want to know what you think about how the Twin Cities MM support group is doing and where it’s heading.

• Are we meeting the needs of our members and living up to our mission to inform, inspire, and support our community?
• What are we doing right?
• What are we doing wrong?
• And how can we improve?

To help us sort things out we have created a Google survey to get a better image of who our members are and what is important to them. Please look it over and fill out what you are comfortable answering. This information will not be shared with anyone outside of our group and your answers arrive to us anonymously.

To go to the survay. Click HERE.


❄︎ 2018 Meeting Schedule ❄︎

  • January 13 – Our guest speaker will be Maribeth Smart, RN, MBA Clinical Nurse Educator with InVentiv Health for Janssen Oncology. Maribeth will discuss the monoclonal antibody Darzalex (daratumumab) which the FDA has approved for single and combination therapy in previously treated patients.  Find out why Darzalex has quickly become one of the most popular weapons in the Myeloma arsenal/ Open Discussion.
  • February 10 “Will There Be a CAR-T Cell Breakthrough for Myeloma?” After the FDA approved CAR-T cell therapies to treat children and young adults suffering from a form of acute lymphoblastic leukemia and certain types of large B-cell lymphoma, Myeloma patients are asking if our disease is next.  Our speaker will be Yi Lin, M.D., PhD, Mayo Clinic; Lead Researcher on Mayo’s Myeloma CAR-T Cell initiative. / Open Discussion..
  • March 10 Melanie Smerillo; MSN, RN, PHN Clinical Nurse Educator with Takeda Oncology will give us a presentation on the topic: “Understanding Lab Values” /Open Discussion.
  • April 14 –  IMPORTANT NOTICE FOR THE TWIN CITIES SUPPORT GROUP:  Our scheduled speaker for today’s meeting has cancelled.  We will continue with our meeting as a “General Discussion”.  
  • May 12 Fighting For Your Rights:  What can you do when the hospital is charging you thousands of dollars for services you may not have had and your insurance company refuses to pay. This meeting will feature a presentation from Julie Olmsted, Staff Attorney with Cancer Legal Care, which advocates for patients rights and provides patients with counseling, advice, and direct legal services on a wide variety of legal issues related to their cancer diagnosis and treatment. / Open Discussion
  • June 9 – The Fraeunshuh Cancer Center has grown to become a leading oncology facility in the metro area. Chief of oncology services at Park Nicollet Cancer Center, Mark Wilkowske, M.D., will lead a tour of the center, explain their services, and describe their approach to treating Myeloma / Open Discussion.
  • July 14 – Open Discussion.  In the “dog days of summer” it’s a good time to discuss what we’ve each learned about living with Myeloma.   Obviously the experts have answers to acknowledged medical issues but patients have discovered answers and have identified issues which the industry often has never addressed or seems to ignore.    Let’s take this opportunity to discuss what we know and what we want to know.
  • August 11 – Radiology for Myeloma:  Since our diagnosis many of us have had a number of full body (x-ray) surveys, bone density scans, MRIs, CAT scans and PET scans.  Some have had vertebroplasty or kyphoplasty on their backs from an interventional radiologist.  Dr. Paul Carolan of Saint Paul Radiology will join us to discuss what tools are available and when they should be used. / Open Discussion.
  • September 8 – What ore the benefits of a more aggressive approach to Myeloma?  Dr. Yogesh S. Jetlava M.D. of the Univ. of Iowa Hematology, Oncology, and BMT department will share with us recent research which supports the idea that early and aggressive multi-drug treatment gives the best results for Myeloma patients. / Open Discussion.
  • October 13 – “Insurance and Myeloma” :  2019 will bring many changes to Minnesota’s insurance markets. Will you be ready for open enrollment?  As a Myeloma survivor what special issues should you consider when choosing a policy?  We will be joined by insurance experts from Twin Cities Underwriters Inc. who will help you learn how to sort through your private insurance, MNSure, and Medicare options.  Remember, asking the right questions is the key to finding the right answers.  Please bring along any notices you may have received from your insurance provider warning you about changes to your policy as this is a good opportunity for our members to compare notes. / Open Discussion.
  • November  10 – A speaker from LeafLine Labs will join us to discuss Medical Cannabis in Minnesota: how it’s used, what it costs, who can legally purchase & use it, and more / Open Discussion.
  • December 8 – It’s that time of year again; our annual December “Alumni Meeting and Pot Luck”.  We’d like to invite anyone who has been living with Myeloma for 5+ years to tell us about living with MM long term and invite everyone to share food, stories, and their expectations for the coming year.
     

Park in the Blue Ramp at the Front of the hospital, which is the Heart & Vascular Cancer Center, park on the Ground floor, follow the hallway, the conference room is on the left behind the hall divider, across from the curved stairway.

Contact Us

Support Group eMailbox = myelomamn@gmail.com
Fred Sulzbach = Phone: 952-938-0232, Email: FJS21105@gmail.com
Gerry Landy = Phone: 651-447-6940, Email: promptland@yahoo.
Viki Kimsal = Phone: 651-604-0132, Email: vkimsal@Q.com
Kevin Veenstra = Phone: 651-695-1708, Email: mnkevin4@gmail.com

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