My day has had more emotional ups-and-downs than a roller coaster–and the afternoon isn’t even over!
Yesterday was a much needed mental health day. Pattie and I spent time working in the yard, stocked-up at Lowes and Home Depot; relaxed in the pool. Spending so much time outside reminded me that a good friend emailed me a report last week, warning those of us that had undergone a stem cell transplant […]
Pitcher Mel Stottlemyre’s extended remission came up at a support group meeting I attended yesterday; one of the patients shared how he’s been in complete response and drug free for over nine years.
Before I pass along information about Mel Stottlemyre, I wanted to follow-up on my post about daratumumab from yesterday; the companies involved have officially applied for FDA approval.
I’ve been corresponding with allogeneic stem cell transplant patient, David from Tampa, Florida. As I’ve followed his story, we’ve become good friends. He’s a great guy!
My father was a colonel in the Air Force during World War Two. But I sometimes forget that my mother was a secretary with the highest security clearance at the Pentagon in Washington DC at the same time. That’s how they met.
A month ago I posted an email update about multiple myeloma patient and allogeneic transplant survivor, Tom Brennan, from Ohio. Tom’s wife, Whitney, was kind enough to pass it along; I had been hearing from a number of readers that were concerned about how Tom was doing:
May 13th I was part of a patient panel asking researchers, Dr. Carmen Baldino, PhD, and Dr. Kelvin Lee, MD. They are working on an incredible new myeloma therapy that may be able to cure–YES, CURE–patients with 14;16 genetic translocations; sort of a lucky genomic loophole.
Loyal reader, Stephanie from Ohio, emailed me some amazing news. Apparently Tom Brokaw’s medial blitz has rocketed multiple myeloma to the number one searched term on the internet this weekend!
I went long yesterday because I wanted to free up time to preview a copy of Tom Brokaw’s new book, A lucky Life Interrupted. Doesn’t hit news stands and sites until today. I was very pleased. A must read for all myeloma patients and caregivers!
I was facing three therapy options, all with significant upsides–and a host of downsides, too. I spent several weeks, kicking-the-can-down-the-road, facing a what I considered to be an impossible decision. None of them were jumping out at me. I was paralyzed, spinning my wheels.
Fellow myeloma patient, Tom Brokaw, is back in the news again; he’s written a book about his experience.
Writer Greg Brozeit reminds us that any myeloma patient that has ever taken dexamethasone owes Mike Katz a heartfelt “Thank you!”
Living to Make a Difference: Mike Katz (Part Two)
I wrote briefly about 25 year multiple myeloma survivor, Mike Katz, earlier this week. But I didn’t really know him; we only spoke briefly when our paths would cross at receptions, or when he was working in the IMF’s exhibition booth at ASH or ASCO.
Please forgive ongoing changes on our site. Some of it has to do with making things device friendly: you will soon be able to read and research blog posts using your smart phone or device. Unfortunately, I’m all about the content. My young new volunteers are all about integrability. We’ll get it worked out. Int […]
Myeloma survivor and CrowdCare Foundation co-founder, Jenny Ahlstrom, is also an aspiring song writer. Jenny’s shy; she reluctantly performed for us last month at Pat’s Myeloma Beach Party. Great voice!
Yikes! Tom has faced such a tough road following his allogeneic (donor) stem cell transplant. Combine this with a mortality rate for myeloma patients that runs somewhere between ten and twenty percent–and a success rate that’s hard to predict–it’s understandable why a lot of doctors and patients shy away from the controversial procedure. Yet to […]
A number of readers from the Western U.S. emailed me about author Ivan Doig’s passing. The popular and well published novelist from Idaho died last week from complications related to his ongoing battle with multiple myeloma.
Ivan Doig dies at 75; writer captured the American West
April 13, 2015 – Associated Press and the L.A. Times
The 8th anniversary of my multiple myeloma diagnosis has unceremoniously come and gone: April 3rd, 2007.
One of the amazing things about the final day of this year’s Beach Party: no one wanted to leave! Instead, the 70 or so remaining patients and caregivers stayed, shared suggestions and started to help us plan next year’s event. Volunteers stepped forward, committees were formed. Michele and Stephanie even started a Pat’s Myeloma Beach […]