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A loyal reader recently asked me to participate in an off-the-cuff, impromptu experiment. Justin had noticed that I had been having trouble with cramps at night. An avid runner, apparently he’s often plagued by cramps, too.
Wednesday our Cure Talk panel was fortunate to spend over an hour with Emory University’s Dr. Sagar Lonial, a well known myeloma specialist. The focus was on ways to treat high risk multiple myeloma patients most effectively.
Yesterday was a game changer for me. A reassuring visit from my guardian angel, then an exciting and energizing hour long, on-air conversation with myeloma patient and activist, Jenny Ahlstrom.
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Posted on September 22 2014 | 461 views
Friday’s post really opened up a can of worms! I expected that. But I don’t want to spend the next few days debating past therapy choices. I’m trying to convey how I think and feel about the decisions that I’m facing now–and the more difficult ones I’m going to be forced to make a few months down the road.
Posted on September 21 2014 | 371 views
Earlier this month I passed along good news about Don Baylor following his unfortunate injury last spring:
Posted on September 20 2014 | 297 views
Chewing gum: the newest way to take daily supplements? I wrote a pair of posts about it recently on HelpWithCancer.org
Posted on September 19 2014 | 765 views
I reported back Wednesday afternoon after meeting with my myeloma specialist, Dr. Roy, at Mayo Clinic. The contrast between Dr. Roy’s slow and steady incremental therapy approach, and the “hit the myeloma hard” Total Therapy approach preferred by Dr. Tricot on Wednesday night’s broadcast couldn’t have been more stark.
Posted on September 18 2014 | 697 views
I’m going to delay posting details about my discussion yesterday with Dr. Roy about whether to transplant or not to transplant until Friday. Last evening’s Myeloma Cure Panel discussion is an ABSOLUTE MUST-LISTEN for any myeloma patient that has only been treated for one year or less.
Posted on September 17 2014 | 424 views
Before I share details about my meeting with Mayo Clinic myeloma specialist, Dr. Roy, this morning, I want to remind everyone that I will be part of a panel questioning Dr. Guido Tricot about the importance of minimal residual disease (MRD).
Posted on September 16 2014 | 475 views
I felt pretty lousy Sunday, yesterday afternoon and now this morning. Me? A hangover? I don’t think the one beer I had Saturday evening while watching college football caused it. Nope, it’s the pomalidomide.
Posted on September 15 2014 | 682 views
Remember the excitement when news about Mayo Clinic’s experimental measles virus therapy broke in May? A Minnesota woman responded so well to treatment that some called it a “miracle” or “cure.” There was a lot of misinformation about the new therapy; the thought of infusing millions of doses of measles vaccine into a single patient was hard to comprehend.
Posted on September 14 2014 | 495 views
Speaking of difficulties associated with long term steroid use, I hadn’t heard from our dear friend, Tom, the allo transplant patient from Ohio that I’ve been covering since last year. So I emailed Tom and his wife, Whitney, asking for an update. Here’s her well crafted and heartfelt response:
Posted on September 13 2014 | 462 views
In the past there has been some debate about how and when it’s best to take large doses of dexamethasone; something most of us need to do at some point during out ongoing therapy.
Posted on September 12 2014 | 481 views
Last month I met a physician and multiple myeloma patient, Mike Mass, and his charming wife and caregiver, Marilyn, at a support group meeting in Jacksonville.
Posted on September 11 2014 | 754 views
Tom Brokaw was a guest host on the Today Show this morning. When asked how he was feeling, Mr. Brokaw responded positively.
Posted on September 10 2014 | 610 views
I had the privilege of interviewing a renowned alternative medicine expert, oncologist Donald Abrams, last January on a Cure Talk broadcast. One of my most popular posts ever, I thought it was worth a second look and listen:
Posted on September 09 2014 | 647 views
I reference my M-spike often. Some cancers don’t have good blood markers. But doctors can reliably monitor the progression of multiple myeloma in the majority of patients by tracking how much monoclonal protein is floating around in their blood or urine, using a serum protein electropheresis (SPEP) test.
Posted on September 08 2014 | 602 views
In July I ran a pair of Patient Snapshot posts about multiple myeloma patient, Don Hamilton, and his wife and caregiver, Joan:
Posted on September 07 2014 | 531 views
Pattie and I have been pleased with how quiet the beaches are here on Amelia Island, even during what should be the busy summer season. Add a bit of bad weather and we can walk a mile on the beach without seeing anyone else.
Posted on September 06 2014 | 620 views
Wouldn’t it be wonderful if one of these shot-in-the-dark studies produced a real anti-myeloma winner?
Posted on September 05 2014 | 547 views
On opening day this spring, former baseball great, batting coach and multiple myeloma survivor, Don Baylor, broke his leg while catching the ceremonial first pitch.
Posted on September 04 2014 | 701 views
Those of us in the online myeloma community live in an information bubble of sorts. We learn, understand and use myeloma related vocabulary. After a while it becomes second nature. But how does the outside world view our cancer? How can they begin to understand what it’s like living this way?
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