I held up surprisingly well on my trip home to see friends and family. My energy level was good, despite taking pomalidomide (POM) daily. But my bone pain has reemerged with a vengeance--and I'm not sure why. As is the case with most myeloma lesions, I’m not in pain when I’m sitting or lying down.
I learned yesterday that Arnie Goodman had died. We were exchanging emails until a few days ago. He let me know he was hospitalized at Moffitt Cancer Center in Tampa and wrote, "I'm sicker than I've been in a long time." I just flew home and haven't had a chance to speak with Arnie's wife,
Finally, help for myeloma patients with low platelet counts: Drug May Aid Multiple Myeloma Patients Who Suffer from Low Platelet Counts Medication reverses side effects of cancer drug bortezomib July 27, 2014 – University of Utah Health Sciences Newswise — (SALT LAKE CITY)—A University of Utah School of Medicine-led study has identified a previously unknown
Up early walking off leg cramps, so I thought I would share some off-the-wall research I stumbled across over the weekend. In March last year, I reported on an experimental new myeloma therapy, plitidepsin: Could myeloma cure lay deep beneath the sea? Seems like the theoretical may become practical. There are currently at least
Tom and Whitney emailed me yesterday with an update about Tom's condition. I'm pleased to report it's mostly good news! Hi Pat This time it's really me. Whitney took over with the updates the last couple times. Let me first just list the stats. I am 99% engraphed. Based on last bone marrow biopsy my
Here's some myeloma related news I've been saving to pass along. I include an update about how I'm doing at the end. HealthDay.com reports that bone marrow donor matches are more common than most thought. Here's an excerpt and link: Good Odds for Those Who Need Bone Marrow Donor, Study Finds Most blood cancer patients
I re-read Arnie Goodman's column today in the Myeloma Beacon. I was blown away! For Arnie to have the resolve to share the details of his myeloma journey long, after others may have given up, is one of the most considerate and thoughtful things I've ever read. No drama. No pity party. The guy is
I had plenty of time to write and reflect flying up to Wisconsin yesterday. Too much time can be dangerous! Here's my tongue and cheek response to family, friends and neighbors that don't take the time to read my work: Last year I posted here on MMB for the 2000th time; at least once a
I'm flying back to Wisconsin today for a family wedding, and to visit my mother in Rockford, Illinois. Simple enough, except that I didn't know I was leaving until yesterday afternoon. Of course our pool contractor has chosen to kick things into high gear while I'm gone. I would like to be home for that.
Janssen Biotech recently announced that it's enrolling newly diagnosed multiple myeloma patients that aren't eligible for a stem cell transplant. The majority of ineligible transplant patients are older, but younger patients that are too sick to transplant can join the study, too. Here are the details, courtesy Pharmaceutical Business Review.com: Janssen to start phase III
In 2012, researchers became excited about the possibility that a drug used to treat thyroid, liver and kidney cancer, sorafenib (Nexavar), might work on multiple myeloma, too. I hadn't heard much about it--until last week. Here are the results of yet another laboratory study, published Friday on the PubMed.gov resource site: Two death pathways induced
Yesterday I introduced you to Don and Joan Hamilton. Don was diagnosed with multiple myeloma in 2008. Joan is his caregiver and advocate. We have emailed back and forth regularly for years. Joan has been kind enough to allow me to tell Don's multiple myeloma story. It's a cautionary tail I felt was important to
Joan Hamilton started emailing me years ago. A devoted caregiver to her husband and multiple myeloma survivor, Don, at first Joan asked me a lot of questions about myeloma therapy and side effects. But as time went on, Joan would email me more often, sharing things about her family and friends. For the past two
Following an online mix-up, I was able to review results from last week's SPEP test, the first since I started using Pomalyst (pomalidomide). Very encouraging! My M-spike was 0.7 and slowly rising when I switched from RVD (Revlimid, Velcade and dexamethasone) to Pomalyst three weeks ago. I completed my first 21 day cycle Saturday. The
Oops! I noticed this morning that our server was down. Not sure how long; site was working last evening. I'm not good with the technical stuff. Sort of like myeloma genetics; I'm a writer, not a math or science guy. I had a tech volunteer for a time. Robb had a degree in internet marketing.
Major League Baseball's annual All Star Game was played last night at Target Field in Minneapolis. My dear friend, Karl Vollstedt, was a huge Minnesota Twins fan. As I leaned over to pick up the phone to congratulate him and chat during the game, I was jolted back to reality: Karl died in April. For
Is it time for a new multiple myeloma staging system? If you think about it, it doesn't really matter what stage a patient is at diagnosis; RVD works in close to 100% of patients, regardless of how they're staged. Apparently some Japanese researchers think so: New Staging System Viable for Myeloma Treated With Novel Therapies
When I was first diagnosed back in April, 2007, I was told by my Mayo Clinic specialist that I had no concerning genetic prognostic indicators. In other words, I was a low risk multiple myeloma patient. But this spring I learned that had changed. Sometime between 2007 and 2011, my myeloma showed a significant shift.
Here's an excerpt from an interesting and comprehensive article from the July edition of Clinical Oncology News, How I Manage: Evolving Role of Autologous Transplantation in Multiple Myeloma. It features the views of myeloma specialist, Sagar Lonial, with the Winship Cancer Institute at Emory University in Atlanta: There is some discussion that, perhaps, patients
Joyce from Minnesota has reluctantly agreed to let me share the lovely poem she sent me yesterday, responding to my last two posts. In it, Joyce puts into words what I've been trying to say for years: Pat, Someday, we won’t have to spend what precious time we have left on earth to pour through