TwinCities – March 2017: Talking About Us

The March meeting was a sharing session.  Our 24 attendees represented a cross-section of the Myeloma community as a whole.  We had nearly an equal spread of people 10 years and over, 5-10 years, 2-5 years and newly diagnosed.  We also had a good mix of those transplanted, preparing for, considering, or who have ruled out transplant.   And we had quite a few people who joined us for their first or second meeting.

A number of issues came up during the meeting and quite a few things outside the group were referenced.  Among them:
An exciting new trial at the Mayo Clinic of CAR-T Cell therapy for Myeloma
Mayo CAR-T Cell study:
The Mayo webpage for the study can be found here:
http://www.mayo.edu/research/clinical-trials/cls-20209641#overview
The U.S. National Institutes of Health Clinical Trials description of the study:
https://clinicaltrials.gov/ct2/show/NCT02658929
A description of their services by Bluebird Bio, the company running the study:
https://www.bluebirdbio.com/our-focus/cancer-immunotherapy

As always, the question of how to successfully deal with neuropathy was again discussed .  The Mayo Clinic is currently running two Neuropathy clinical trials, one on Scramber Therapy and the other on Cryotherapy .  Here are links to their webpages:

The First Study
A Study Comparing Scrambler Therapy versus TENS Therapy in Treating Patients with Chemotherapy-Induced Peripheral Neuropathy

Click HERE to view or download a copy of the Mayo Press Release for the study.

And the other study:
Topical Cryotherapy in Reducing Pain in Patients With Chemotherapy Induced Peripheral Neuropathy or Paclitaxel Induced Acute Pain Syndrome

Finally, for those who have wondered about the use of medical marijuana for neuropathy, the Minnesota Neuropathy Association’s March meeting will feature Dr. Gary Starr, co-founder of LeafLine Labs, and MNA Board member, Mary McLeod, who will discuss the use of cannabis in addressing neuropathic pain.
The meeting will be held March 25 at 10am in St. Michael’s Lutheran Church, 9201 Normandale Boulevard, Bloomington, MN 55437.
Click here for a flyer and directions.

LATE NEWS
The Healthwell Foundation has moved Multiple Myeloma to it’s list of Closed Funds. Their website states that, “these funds are currently closed to new and re-enrolling patient applications. However, we continue to manage existing grants”.

This leaves the Patient Advocate Foundation as the only third party non-profit organization helping to directly pay the cost of prescription copays for Myeloma patients. Their financial limits are more restrictive than other organizations so some people who have been helped in the past my be out of luck.

We will continue to monitor the situation.

Gerry Landy

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