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2606, 2015

Play the odds: What happens if your therapy doesn’t work?

By |June 26th, 2015|About Pat, Diagnostics, Therapy, Tips, Transplants|

I wanted to backtrack and focus on what may be the most important factor when analyzing the state of my multiple myeloma: my dwindling number of therapy options.

2506, 2015

Lots of news; good and bad

By |June 25th, 2015|About Pat, Diagnostics, Inspirational, News, Side effects, Support, Tips, Transplants|

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.

2406, 2015

“Full frontal” bone marrow biopsy

By |June 24th, 2015|About Pat, Diagnostics|

I’ve been asked from time to time why I don’t post more pictures.  I’m a writer; that’s what I do.  I paint pictures using words instead of photos.  Today I’m going to make an exception and share pictures of Tuesday’s sternal bone marrow biopsy in living color.

505, 2015

Mystery infection hanging on

By |May 5th, 2015|About Pat, Diagnostics, Side effects, Tips|

My four day long, unrelenting fever is ongoing.  I described it as a “neutropenic” fever yesterday, because it felt so much like a half dozen others I’ve had in the past.  Turns out I was wrong.

2504, 2015

Update: Tom from Ohio

By |April 25th, 2015|Caregivers, Diagnostics, News, Side effects, Support, Transplants|

Like many of you, I’ve been worried about our dear friend, allogeneic stem cell transplant recipient, Tom from Ohio, ever since his wife, Whitney, shared that he was facing another setback and had been rushed to intensive care.  Whitney kindly took the time to email us about how Tom is doing:

2404, 2015

CCd hot new therapy for relapsed patients

By |April 24th, 2015|About Pat, Diagnostics, News, Side effects, Transplants|

Reality check: 21st Century Oncology just called confirming my next Kyprolis infusion on Monday.  Cytoxan, Kyprolis and dex, OH MY!

1404, 2015

High tech diagnostics emerging to battle most complicated cancer

By |April 14th, 2015|Diagnostics, Research|

The Multiple Myeloma Research Foundation (MMRF) just announced  a collaboration with Adaptive Biotechnologies, the University of Torino and Amgen/Onyx to perform sequencing-based assessment of minimal residual disease (MRD) on hundreds of multiple myeloma patients.

304, 2015

We should all pay more attention to test results

By |April 3rd, 2015|About Pat, Diagnostics, Tips, Transplants|

Think I have an advantage knowing a lot of myeloma specialists?  How about the invaluable help I get from our readers?  Check-out the sage advice a patient and caregiver from Michigan emailed me on Tuesday:

2503, 2015

Bad news from my Mayo Clinic specialist

By |March 25th, 2015|About Pat, Diagnostics, Inspirational, Supplements/Drugs|

At the end of Saturday’s presentations I shared something very personal with our group.

1303, 2015

Lessons learned: My 2nd opinion in Iowa (Part Four)

By |March 13th, 2015|About Pat, Diagnostics, Transplants|

I rarely get writer’s block.  A reporter from the Jacksonville newspaper just emailed me a list of questions about our beach party event next week.  I answered them without giving it a second thought.  But writing today’s post has me stumped.  This is real life or death stuff.

1103, 2015

Lessons learned: My 2nd opinion in Iowa (Part Three)

By |March 11th, 2015|About Pat, Diagnostics, Therapy, Transplants|

My health care team is faced with a complicated dilemma.  On one hand, pomalidomide/dexamethasone therapy continues to whittle my numbers down; my M-spike has systematically dropped from 0.7 to 0.2 over a ten month period.   On the other hand, myeloma activity is steadily increasing in and around my bones.  Talk about mixed messages!

1003, 2015

Lessons learned: My 2nd opinion in Iowa (Part Two)

By |March 10th, 2015|About Pat, Diagnostics|

What did my test results show, and what does Dr. Tricot propose we do about it?

403, 2015

What’s in a number? Great news from a new lab

By |March 4th, 2015|About Pat, Diagnostics, Tips|

I started my long, cold trip up to Iowa City for testing, buoyed by some unexpectedly good news.

2002, 2015

I want more days to walk along the beach

By |February 20th, 2015|About Pat, Diagnostics, Side effects, Support, Tips|

Wednesday I drove back to Tampa to visit my old support group, and promote my Beach Party in March.  A dozen or so members plan to party with us!  As I closed my remarks, someone in the group asked me this: “Why do you need fly all the way to Iowa for a second opinion?  […]

502, 2015

More about my late stage myeloma therapy options

By |February 5th, 2015|About Pat, Diagnostics, News|

I’m listening to the broadcast I recommended to you yesterday, featuring Dr. Robert Orlowski from M.D. Anderson.  The news is encouraging.  I’m more determined than ever to hold on and live long enough to benefit from exciting new immunotherapies.  Might they save my life?

202, 2015

Time for a second opinion

By |February 2nd, 2015|About Pat, Diagnostics, News, Therapy|

It’s easy to say my goal is to stick around until another new therapy comes along.  But how?  What’s my plan?  Access to the best new immunotherapies are still a couple of years away–and I’m running out of options.

2101, 2015

Reader emails always enlightening

By |January 21st, 2015|About Pat, Diagnostics, News, Support|

I receive a half dozen emails about a topic for every one comment you see after I publish a blog post.  I enjoy getting emails from readers.  Often they’re uplifting, helping me power through another day.  And I get some of my best post ideas from them. Here are several examples:

1911, 2014

Dr. Gareth Morgan: New pathway to a cure!

By |November 19th, 2014|Diagnostics, Inspirational, News, Tips, Transplants|

Last night’s Cure Talks broadcast was both encouraging and overwhelming.  Myeloma Institute of Research and Therapy (MIRT) Director, Dr. Gareth Morgan, spent a great deal of time discussing upcoming advances in myeloma therapy and diagnostics.  This wasn’t more of the same.  Dr. Morgan revealed a number of new, innovative approaches being initiated now in Arkansas.

1811, 2014

Early myeloma related ASH announcements

By |November 18th, 2014|Diagnostics, News, Research, Supplements/Drugs, Therapy|

I’ve very excited!  Yesterday my registration materials arrived for next month’s American Society of Hematology (ASH) annual meetings in San Francisco.  And like clockwork, researchers and pharmaceutical companies have started issuing press releases promoting presentations featuring clinical trial results to be presented there.

1311, 2014

Danny Parker: Thoughts from the Edge of Relapse

By |November 13th, 2014|Diagnostics, Inspirational, Research, Tips|

He’s back!  My dear friend and spiritual leader, Danny Parker, has had a tough year.  After some subtle arm twisting, Danny agreed to share his experiences with our MMB readers:
Thoughts from the Edge of Relapse
Pat has been asking me in recent weeks to say something about my disappearance from the myeloma world.  Of course the […]