Thank God pomalidomide is working for me! But what do we do once it's not? Dr. Roy and I had a chance to discuss that on Monday. First the good news. Dr. Roy's gut feeling is that POM should work well for quite some time. And statistics back him up. Patients that respond like I
Last week I spoke to a group of over 100 patients and caregivers in Tampa. But my "patient perspective" was an afterthought. The main event featured a number of well known myeloma experts. Having attended a number of events like this, I didn't expect to hear much that was new. I was wrong! Sponsored by
I met with my Mayo Clinic myeloma specialist, Dr. Roy, Monday. Great news all the way around! Based on my lower M-spike--down to 0.4 from last month's 0.6--a significant reduction in pain caused by new lesions, and other more subtle changes in my blood work, Dr. Roy agrees that the doublet of pomalidomide (trade name,
A new reader, Hailey, from Washington, DC, sent me a link to this fascinating video about using nutrition to help defeat cancer. Recorded in 2010, the advice presented by researcher, Dr. William Li, is timeless. Give it a look; success by patients with multiple myeloma are featured in the presentation: http://www.ted.com/talks/william_li#t-609043 I love this guy!
Last year's Myeloma Beach Party was a blast! An amazing afternoon and evening spent together on the waterfront in Tampa. This year we've decided to take things to the next level; an entire weekend of activities March 20th - 22nd on Amelia Island near Jacksonville. Friday evening's program will focus on ways to help improve
As I reported last month, I've been working with myeloma activist, Jenny Ahlstrom, to help develop a revolutionary way to fund--and help speed forward--cutting edge clinical trials. Jenny has multiple myeloma, but is doing exceptionally well. She's not letting her diagnosis slow her down. Even while preparing for a busy week in San Francisco at
When my email went down earlier this week, I was surprised how much I enjoyed the break. So when Pattie's family came to visit this weekend, I decided to try it again: I didn't check email or access the internet for 24 hours. The downside? It all doesn't magically go away! My return to reality
Like a "tell" in poker, sometimes financial news reveals what pharmaceutical companies are reluctant (or prohibited) to report. I don't want to read too much into it, but considering all of the good things I've heard about daratumumab, this smells like very good news: NASDAQ.COM Genmab Reaches USD 10 Million Milestone in Daratumumab Collaboration with
It never ceases to amaze me how far afield some of our readers are here at MMB. New Zealand, Australia, Europe--even Africa. None of that makes Alaska any less exotic. A myeloma patient there can't just drive a few hours to visit Dana-Farber or Mayo Clinic, making things even more difficult than they already are.
Sometimes I suffer from techno paralysis. I want to apologize to anyone that has tried to reach me via email the last two days. When using an email that's attached to a registered domain name, an organization or business needs to pay a company to host the email. I had planned to switch companies and
Reflecting back on my autologous stem cell transplant in the summer of 2011, the experience wasn't all that bad--except for one glaring issue: nausea. I understand some patients experience very little nausea during the recovery process. But for the rest of us, it's a truly miserable experience. But there may be hope on the horizon.
From time to time I like to do follow-ups about former Patient Snapshot subjects--especially when the news is good. In February, 2013, I wrote about Mark, a newly diagnosed patient that was having a hard time. Mark's daughter, Stephanie, had emailed me for help; she was very concerned about her dad. I was more
Thanks for the encouraging emails and comments! I'm stoked (OK, dexed up!) to keep on working. I did see that some of you are having trouble downloading the extra large pictures I posted yesterday--and I have a lot more to put up today--so I'll cut the size down on this next batch. We were told
Last year I surprised Pattie when I asked her where she wanted to live when I was gone. It was a difficult topic, but she didn't hesitate. "Not here." she said. "Then let's move now, when I can still help out." I responded, kick-starting an exhausting, eight month long odyssey. We had decided to make
Lots to share today. I'll start with how I'm feeling and what comes next. After returning from Boston feeling a bit better, I unexpectedly relapsed. Back on the toilet every 2 or 3 hours for a couple more days. No fever; that apparently had been a neutropenic spike up to 102.5. Have you ever had
The American Society of Hematology (ASH) meetings are just around the corner, so there should be a lot of myeloma related news soon. In the meantime, here's an update. In August I wrote about a new clinical trial for smoldering myeloma patients. Initiated by OncoPep, it featured an experimental cancer vaccine, PVX-410: Immunotherapy clinical trial
A week ago, good friend and fellow patient blogger, Gary Petersen, wrote a post about an important topic: Why do people die from Multiple Myeloma? Lack Of Awareness?? It Is Complicated!! Gary is very passionate about his view that heightened myeloma awareness--combined with treatment by experienced myeloma experts--can save lives. If that means extend a
Looks like I called it! A few weeks ago I inferred that panobinostat could well be the next myeloma drug to garner FDA approval: Which new myeloma drug will the FDA approve next? Check out this article I found on OncLive late last week: FDA Schedules ODAC Hearing for Panobinostat in Multiple Myeloma Silas
Are you like me? Are your bones negatively affected by multiple myeloma? If so, Wednesday's Myeloma Cure Panel discussion could be important. I will be joining Gary Petersen, Jack Aiello and Cynthia Chmielewski to interview specialist, Dr. Amrita Krishnan about it. Here's the link: http://us8.campaign-archive1.com/?u=f6b39f08e8d84806e92f11204&id=e4ab659159&e=2c9ca24fe3 If you have questions you can leave them here in
Still don't feel well, but I don't care. Our walk on the beach this morning was spectacular! An osprey dove from 200 ft above straight down, snatching a glistening silver fish in his talons six paces in front of us. Later a pelican swooped 10 feet above us, cutting suddenly out to sea and skimming