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Monthly Archives: August 2015

Home/2015/August
31 08, 2015

Help with peripheral neuropathy A to Z

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As promised, here's a comprehensive list of drugs and supplements that readers use to help battle peripheral neuropathy (PN) symptoms: Acetyl L-carnitine - Important amino acid that might help. It has the added benefit of being credited with helping improve memory in Alzheimer’s patients–those of us with chemo brain can use all the help we

30 08, 2015

Happy Anniversary! Married 28 years

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I often write about myeloma related anniversary's: another year of survival, key dates from stem cell transplants present and past. Today's anniversary has nothing to do with cancer. My wife and I were married in Madison, Wisconsin, 28 years ago. It's already raining hard here, remnants of former tropical storm Erika. Are we doing something

29 08, 2015

Greg Brozeit: History of Patient Advocacy in U.S.

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Guest columnist, Greg Brozeit, is at it again. Put your thinking caps on. Greg shares more of his outside-the-box, global perspective with us today, this time focusing on patient advocacy: A Short Political History of Patient Advocacy Modern patient advocacy was born in the United States. In the beginning it was mostly political. Although a

27 08, 2015

BREAKING NEWS: Daratumumab pushes forward toward FDA approval

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Important news as the promising new immunotherapy, daratumumab, continues to move swiftly toward FDA approval. My friends at Genmab and Jannsen in the Netherlands emailed me details last evening, along with some helpful background information to review: Daratumumab is an investigational human anti-CD38 monoclonal antibody that received Breakthrough Therapy Designation from the FDA in May,

25 08, 2015

Tips to help control peripheral neuropathy (Part Three)

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Common peripheral neuropathy (PN) remedies not working for you? Or maybe you'd like to try something new in addition to steps you've already taken to control symptoms. Here are additional suggestions made by fellow patients: Suzanne suggests, if the neuropathy get too annoying, ask your Doctor to put you on a small dose of nortriptline;

22 08, 2015

Tips to help control peripheral neuropathy (Part One)

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Like many multiple myeloma patients, I have battled peripheral neuropathy symptoms since starting therapy in 2007. I have written dozens of posts over the years featuring tips on ways to help minimize the debilitating side effects. Several have helped me. Maybe one or more can help you, too. Patients that have been diagnosed within the

21 08, 2015

CrowdCare Foundation betting on T cell therapy

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After hearing from dozens of you about your peripheral neuropathy--and what you do to help minimize the symptoms--I'm working on a two part series about it, sharing tips from more than 20 patients; I'll run the posts this weekend. In the meantime, here is CrowdCare Foundation's official press release, announcing our support for two important,

18 08, 2015

Cutting edge T cell research could help save our lives

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I've got some exciting news. My good friend and founder of the CrowdCare Foundation, Jenny Ahlstrom, announced the two groundbreaking clinical trials we plan to help fund today. Regular readers will remember that I'm a member of CrowdCare Foundation's Patient Advisory Board. We've spent the last eight months searching for underfunded research most likely to

14 08, 2015

Understanding our future: immunotherapies

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I just listened to one of the best and easiest to understand videos I've found, explaining how the new monoclonal antibodies (elotuzumab and daratumumab) work. My good friend and long lived myeloma survivor, Jack Aiello, is interviewing Dana-Farber's Dr. Paul Richardson on a Patient Power broadcast. It's short and to the point. Give it a

13 08, 2015

More about daratumumab, followed by Pat’s medical update

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Before I write about how I'm been doing the past day or two, here's the mainstream Florida's media's perception of yesterday's feature, daratumumab: Multiple myeloma sufferers given new hope with 'wonder drug' August 12, 2015 – 693 NewsTalk, Melbourne, Australia      A breakthrough drug is providing "unprecedented results" and giving new hope for patients with a rare

12 08, 2015

BREAKING NEWS: MMRF helps push expanded access for dararumumab

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Today is your last chance to participate in a focus group study using your smart phones. Amazon gift cards will be given to all who participate. Contact Kristin Mraz,Community Recruitment Manager - WEGO Health, 177 Tremont Street, 3rd Floor,Boston, MA,02111 - cell:  518.774.6114 - office:  617.863.7745 - fax:  617.426.5027 - kristinm@wegohealth.com. I've worked with these