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Monthly Archives: July 2014

31 07, 2014

I feel good, but my bone pain is getting worse

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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. 

30 07, 2014

I’ll miss you, Arnie–we all will

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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,

29 07, 2014

BREAKING NEWS: New drug could improve our quality of life

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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

26 07, 2014

Myeloma News

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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. 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

25 07, 2014

A must-read for any myeloma survivor!

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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

22 07, 2014

New daratumumab study enrolling newly diagnosed, older patients

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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 Janssen to start phase III

21 07, 2014

Cancer drug Nexavar: Why won’t myeloma researchers let go?

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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 resource site: Two death pathways induced

18 07, 2014

Great news! POM is working!

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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

17 07, 2014

We’re back online!

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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. 

16 07, 2014

I can’t believe that Karl’s gone…

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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

15 07, 2014

Time for a new, simpler myeloma staging system?

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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

13 07, 2014

Dr. Sagar Lonial’s thoughts about stem cell transplants

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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

12 07, 2014


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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