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21 01, 2016

MMRF 2015 myeloma year in review

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I'm part of a Cure Talk Radio broadcast in a few hours featuring Multiple Myeloma Research Foundation co-founder, Anne Quinn Young. If you can't listen live, I'll pass along a link so you an listen later. Here's a short rundown about the show: 2015 saw a lot of action in the Myeloma world. Four new

18 01, 2016

Medical Update: Stinky news

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Rough weekend. As I explained in a post last week, I'm not used to backsliding--post transplant--once I start improving. Once again, diarrhea is a real problem. Imodium or Lomotil is only slowing things down for three hours at a time, making this the "I'm in danger of becoming dehydrated," type of diarrhea. Is that why

16 01, 2016

Blood Glucose, MGUS, Myeloma & Metformin (Part Nine)

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A lot has happened since I ran two of the final installments about the importance of controlling blood glucose by Danny Parker: Blood Glucose, MGUS, Myeloma & Metformin (Part Seven and Eight)   ASH, unscheduled trips to the ICU, Iowa City drama. A lot went wrong in December. I'm still having trouble bouncing back from

8 01, 2016

Rest in peace dearest Sara

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These are the posts I dread writing. One of my closest myeloma friends, Sara Lathan, from Charlotte, North Carolina, lost her extended fight with multiple myeloma earlier this week. I first met Sara after speaking to an awesome support group in Charlotte. Was it three years ago? Four years? They all seem to run together

1 01, 2016

Hope springs eternal in 2016

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Never a dull moment. Our end of Amelia Island lost power over the holiday. It happens a lot. Even when it isn't windy, a heavy rain can leave us without power. The unusual part this time: our electricity was off for so long. It usually sputters back on after an hour or two. I took

30 12, 2015

Hotel options for April Beach Party event

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It's hard to believe that we're only three months away from the 3rd Annual Pat's Myeloma Beach Party. The event is a "party" in name only; there will be 15 myeloma experts on hand to address topics that last year's attendees and readers feel are most important to them. The three day event is scheduled

26 12, 2015

An amazing day that exceeded unrealistic expectations

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Sometimes Christmas day can be a letdown. Let's face it; the media and retailers build it up so much it's hard to live the idealized version. Am I right? That said, the time I spent today with Pattie, our Island Dog and Calypso Kitties was amazing. I didn't even think about checking email or posting

23 12, 2015

Canadian patients need help getting daratumumab

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My good friend from north of the border, Nancy Shamanna, asked me to share this link to a survey for patients that have taken daratumumab (Darzalex). She's hoping a positive response might move Canadian officials to adopt the new immunotherapy sooner rather than later: Myeloma Canada seeks patient and caregiver treatment input Dear patient/caregiver, Myeloma

19 12, 2015

More financial aid is on the way!

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This is awesome news; another source of financial assistance for myeloma patients in need. HealthWell Foundation Launches Fund to Provide Financial Assistance to Multiple Myeloma Patients New Fund Offers Relief to Patients Struggling with Out-of-Pocket Costs for Treatment GAITHERSBURG, Md., Dec. 16, 2015 /PRNewswire/ -- The HealthWell Foundation®, an independent non-profit that provides a financial

15 12, 2015

This is why I do what I do

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I experience countless emotional moments as I hear from myeloma patients and caregivers from around the country and sometimes, around the world. I wanted to share an exceptionally personal one with you here today. In October, I flew up to Boston for an annual reunion of Myeloma Patient Ambassadors. I was a member of the

18 11, 2015

Blood Glucose, MGUS, Myeloma & Metformin (Part One)

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Last month our old friend and guest columnist, Danny Parker, approached me about writing a multi-part series about his passion: helping to control multiple myeloma using a combination of lifestyle, diet and possibly complimentary drugs not normally used to treat myeloma. I'm not sure how many of you know this, but Danny is a prolific

17 10, 2015

Thank you rant

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A number of you have already contributed to help CrowdCare Foundation fund a pair of cutting edge T cell trials in Germany and John Hopkins in Baltimore. THANK YOU! For those of you on-the-fence, I wanted to share some good news. A friend has agreed to match any contribution—dollar for dollar—up to a total of