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About Pat, Side effects, Tips

My blood counts rebound after a week off

Posted on July 23 2014 | 199 views

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.

Comments (5)

Janseen logo

News, Research

New daratumumab study enrolling newly diagnosed, older patients

Posted on July 22 2014 | 279 views

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.

Comments (2)

News, Research

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

Posted on July 21 2014 | 364 views

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.

Comments (0)

BIRD Paulie

Caregivers, Side effects, Support

Patient Snapshot: Don and Joan Hamilton from Ohio (Part Two)

Posted on July 20 2014 | 432 views

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 share.

Comments (8)

Don and Joan H


Patient Snapshot: Don and Joan Hamilton from Ohio (Part One)

Posted on July 19 2014 | 371 views

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.

Comments (2)

About Pat, Side effects, Therapy

Great news! POM is working!

Posted on July 18 2014 | 660 views

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!

Comments (19)

We’re back online!

About Pat, Support

We’re back online!

Posted on July 17 2014 | 253 views

Oops!  I noticed this morning that our server was down.  Not sure how long; site was working last evening.

Comments (0)


About Pat, Caregivers, Inspirational, RIP

I can’t believe that Karl’s gone…

Posted on July 16 2014 | 392 views

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.

Comments (9)

Time for a new, simpler myeloma staging system?

News, Research

Time for a new, simpler myeloma staging system?

Posted on July 15 2014 | 536 views

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.

Comments (9)

About Pat, Diagnostics, Research, Transplants

What’s in a number? I’m a t(11;14) not t(4;14)

Posted on July 14 2014 | 729 views

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.

Comments (21)

Dr. Sagar Lonial’s thoughts about stem cell transplants

Diagnostics, Research, Transplants

Dr. Sagar Lonial’s thoughts about stem cell transplants

Posted on July 13 2014 | 596 views

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:

Comments (7)



Posted on July 12 2014 | 552 views

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:

Comments (11)


Diagnostics, News, Tips, Transplants


Posted on July 11 2014 | 626 views

After the obligatory 2 year waiting period following my approval to receive Social Security Disability (SSDI), I became eligible to receive Medicare.  I respectfully declined it.  Turns out my instinct were right!

Comments (11)

About Pat, Side effects, Tips

Reader suggestions to help stop cramping

Posted on July 10 2014 | 455 views

A loyal reader recently asked me to participate in an off-the-cuff, impromptu experiment.  Justin had noticed that I had been having trouble with cramps at night.  An avid runner, apparently he’s often plagued by cramps, too.

Comments (11)

About Pat, Side effects, Tips

Medical Update: My declining bone marow function a concern

Posted on July 09 2014 | 749 views

Numbers don’t lie–except when they do.  I met with my medical oncologist, Dr. Mathew Luke yesterday.  That went fine.  Still too early to know if pomalidamide is working for me.  But I was devastated by my CBC results.

Comments (9)

Patient Power

News, Research, Tips

Two easy ways to increase your myeloma IQ

Posted on July 08 2014 | 598 views

By now I shouldn’t need to convince you that patient education is the cornerstone of living better and longer with multiple myeloma.  Access to audio and video interviews with leading myeloma specialists helps make it easy.

Comments (4)

Weighing pros and cons of L-glutamine

Nutrition, Research, Supplements/Drugs, Tips

Weighing pros and cons of L-glutamine

Posted on July 07 2014 | 363 views

Talk about conflicting data!   According to a number of researchers, the amino acid, L-glutamine, may be bad for multiple myeloma patients.  Yet taken in large enough doses it clearly helps many control their peripheral neuropathy.

Comments (0)

Experts starting to agree: Myeloma and diet linked

Nutrition, Research

Experts starting to agree: Myeloma and diet linked

Posted on July 06 2014 | 821 views

Topping yesterday’s summary list of foods for multiple myeloma patients to avoid: excessively toasted breads and baked goods.  The process produces a acrylamide, a well known carcinogen.  For years myeloma specialists have told patients that diet has nothing to do with multiple myeloma.  This was still the prevailing view in 2012.  Danny Parker was ahead of his time!

Comments (0)

Nutritional tips for multiple myeloma patients revisited

Nutrition, Tips

Nutritional tips for multiple myeloma patients revisited

Posted on July 05 2014 | 590 views

Now myeloma lifestyle columnist, Danny Parker, wrote a series of nutritional columns for MMB back in 2012.  He summarized the do’s and don’ts in this helpful post, read by thousands of patients and caregivers:

Comments (2)


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