I had a chance to see myeloma patient and CrowdCare Foundation co-founder, Jenny Ahlstrom, in Boston last week. She made an impassioned plea to anyone that would listen to help her raise money to pay for two cutting edge T cell clinical trials; one in the U.S. and one in Germany.
I’m so proud of myself! I finally figured out how to download pictures from my Android smart phone to my laptop. It’s no secret that I’m tech challenged. And it isn’t about age: old timer, good friend and fellow myeloma survivor, Gary Petersen, gave me a tutorial at a patient dinner meeting on Tuesday.
I wanted to follow up and respond to comments and emails about my decision to proceed with the tandem. But before I start, I have a confession to make.
While our brand new CrowdCare Foundation continues to raise money to help support two specific T cell therapies, the MMRF embraces a much broader mission. I’m pleased to announce that the MMRF has now tested 1000 newly diagnosed patients that have agreed to be monitored from beginning to end. Tracking their progress–through a variety of […]
As promised, I’m glad to share an update about how I’m doing, 48 days post-transplant. So far, so good!
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, […]
My old friend, Don Wright, is the Energizer Bunny of multiple myeloma; he keeps running and running…
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.
This is exciting! In June I wrote about a myeloma research breakthrough made at my Alma Matter, the University of Wisconsin. Since then one of the lead investigators, Chorom Pak, has been kind enough to email me updates and insightful explanations about their work.
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
I’ll be the first to admit that it was tough getting through my first stem cell transplant in 2011. Chronic nausea during and after the experience made it hard to endure. By any measure, my second transplant this summer was much easier to get through.
Its always great to hear from friends we’ve featured in our Patient Snapshot series, especially when there’s good news. Tom and his wife and caregiver, Whitney, have had a difficult time. For months it seemed like if it could go wrong, it did. I’m glad the tide has turned.
So much for short posts! OK, yesterday I got a bit carried away. I was feeling pretty good, writing from an awesome, private infusion suite here at U of Iowa Cancer center hooked to an overloaded poll so the team could give me IV fluids and antiboitics.
So the decision has been made. I’ve been given over 7 million of my own stem cells back over the past two days. Dr. Tricot even hand picked the bags, mixing old (from 2007) with new, freshly harvested cells.
I’ve given up trying to post in chronological order. Rushing around getting poked, prodded and bent over backwards can disrupt a guy’s sense of space and time.
Preseason is over. Today starts the regular season. It’s the main event.
I’m including an update about how I’m feeling after I share information about an important event taking place in Houston in a week; accessible to patients and caregivers on site or on your computers.
Readers have been so kind to me these past weeks, even going so far as calling me “brave” and a “hero.” I try and help, but I don’t think of myself that way. I’d like to introduce you to someone who is. Sara Lathan from Charlotte, North Carolina, is my hero.
Nothing but good news today! But first, from the strange but true files, I learned that last week’s much ballyhooed sternal bone marrow biopsy came up empty, too. That’s three straight bone marrow biopsies that haven’t produced enough myeloma cells to run cytogenetics. An untrained observer might ask, “Does he really have multiple myeloma?
I’m relieved, disappointed, concerned and overwhelmed–all at the same time. The long awaited meeting with Dr. Tricot yielded a mixed-bag of good and bad news.