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Long shot or not, Iowa City here I come!

About Pat, News, Transplants

Long shot or not, Iowa City here I come!

Posted on March 31 2015 | 746 views

I’d made my decision: no transplant.  The majority of myeloma experts–especially transplant docs–agreed.  So did Pattie.  Then a single phone call changed it all.

Comments (14)

Dr.-Hofmeister-200×200

News, Research, Transplants

First of ten innovative CrowdCare broadcasts today

Posted on March 30 2015 | 387 views

I’m helping the new CrowdCare Foundation launch an innovative idea: researchers, myeloma specialists and patients helping to identify and fund the next best therapy for high risk multiple myeloma.  Did you know that late stage patients that have relapsed two or more times are all considered to be “high risk?”

Comments (2)

Cytoxan label

About Pat, Therapy, Transplants

Another myeloma therapy flip flop?

Posted on March 29 2015 | 675 views

I went back and edited yesterday’s post; too many typos when I edit and publish late at night.  I don’t want to get bogged down with too many details, but I’m hoping what I report will help others like me.

Comments (8)

About Pat

My head is spinning…

Posted on March 29 2015 | 602 views

Sorry my post is so late this weekend.  I got caught up in enjoying Saturday; going to the farmer’s market with Pattie, cleaning the pool, cooking dinner and watching Wisconsin win another nail biter against Arizona to got the the NCAA Final Four in men’s basketball–for the second year in a row.

Comments (7)

Dr. Bensinger BW

About Pat, News, Tips, Transplants

Why can’t I get my doctors to step up and help me!

Posted on March 27 2015 | 918 views

Last night I had the opportunity to interview one of the busiest stem cell transplant experts in the United States: Dr. William Bensinger from Seattle.  I try not to ask personal medical questions during my interviews.  But now is not the time to stick to shy and stick to the script!

Comments (13)

Dr William Bensinger

Side effects, Tips, Transplants

Stem cell transplant expert live tonight

Posted on March 26 2015 | 546 views

I’m excited about tonight’s Cure Talks broadcast.  A panel of experienced patients and I will be speaking with Dr. William Bensinger, Professor of Medicine at the University of Washington, and director of the Autologous Bone Marrow Transplant Program, Seattle Cancer Care Alliance.  I believe his medical group at Hutchinson does more stem cell transplants than anywhere else in the country.

Comments (2)

About Pat, Diagnostics, Inspirational, Supplements/Drugs

Bad news from my Mayo Clinic specialist

Posted on March 25 2015 | 1,253 views

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

Comments (24)

20150321_082641-1

About Pat, Inspirational

Send me your Beach Party photos…

Posted on March 24 2015 | 392 views

We had patients and caregivers here from 23 different states last weekend–and speakers from as far away as California, Kansas City, Minneapolis and Boston.  I was so busy getting to know my new friends and trying to stay organized this weekend, I didn’t get a chance to take enough pictures.  Hopefully some of you can email me pictures of your favorite Beach Party moments.

Comments (1)

DSCN1478

About Pat, Inspirational

It was an amazing weekend!

Posted on March 23 2015 | 640 views

I’m exhausted!  Hosting over a hundred friends for a long three day weekend takes a lot out of a guy.  We laughed, we cried–and everyone learned a lot, listening to 14  different speakers discussing topics ranging from experimental viral therapies to the benefits of medical marijuana.

Comments (10)

Dr. Raje

About Pat, Books, Inspirational, Tips

I’ve never planned a kidnapping before!

Posted on March 21 2015 | 603 views

Last night was amazing!  Listening to Danny Parker address the role of spirituality in our lives opened so many eyes.  Dr. Chanan-Kahn’s easy to follow presentation helped us all better understand how current myeloma therapies work–and the ways future therapies may help extend our lives.

Comments (3)

Inspirational, News, Research

Crowd Care Myeloma Initiative makes the cut

Posted on March 20 2015 | 470 views

Crowd Care Foundation’s research initiative is underway.  36 researchers from a number of different countries submitted proposals that are designed to help late stage, high risk multiple myeloma patients like me.  High risk?  I thought I was “low risk.”  Let me explain.

Comments (0)

Beach Party helping to raise myeloma awareness

Inspirational, News

Beach Party helping to raise myeloma awareness

Posted on March 19 2015 | 492 views

GREAT NEWS!  Weather forecast this weekend is for sun and 80 degrees.  Jacksonville’s metro newspaper, The Florida Times Union, was kind enough to run an article online and in print about this weekend’s event.  Reporter Beth Cravey didn’t just run our press release; she took the time to interview me and put a different spin on our gathering:

Comments (7)

Curcumin two

News, Research, Supplements/Drugs, Tips

More evidence curcumin works; but be careful

Posted on March 18 2015 | 725 views

More evidence that curcumin may help slow multiple myeloma.  Did you know that the spice derivative acts as a blood thinner?  I didn’t.  For those of us taking blood thinners like warfarin and Xarelto, I’m wondering if high doses of curcumin alone might be enough to help prevent blood clots caused by IMiDs?

Comments (6)

News

Sub-q daratumumab study announced

Posted on March 17 2015 | 470 views

Following Takeda’s lead with sub-q Velcade, Genmab hopes that their new immunotherapy, daratumumab, will work sub-q, too.  I like it!  These guys aren’t wasting any time.  Daratumumab isn’t even FDA approved yet:

Comments (0)

Beach Party Event Schedule Set

About Pat, News

Beach Party Event Schedule Set

Posted on March 16 2015 | 556 views

Pat’s Myeloma Beach Party is less than one week away!  We have registrants from 22 States and Canada!  There are still 6 spots left if you’d like to be impulsive and sign-up last minute.  And there’s no limit to how many can register for Crowd Care’s Beach Walk fundraiser Saturday morning.  Come on down!

Comments (10)

About Pat, Therapy, Transplants

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

Posted on March 14 2015 | 783 views

Let’s wrap up this series of posts (for now).  Do I allow Dr. Tricot to hit my myeloma hard before, during and after a second stem cell transplant, or continue to follow an incremental approach that uses the least toxic treatment combinations possible?  I’m not crazy about either choice.  I believe there is a third option.

Comments (7)

Dr. Luke

About Pat, Diagnostics, Transplants

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

Posted on March 13 2015 | 871 views

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.

Comments (12)

About Pat

Time out! Is being too busy a blessing?

Posted on March 12 2015 | 509 views

Plain and simple, I’m exhausted!  We have company staying here at the house, I’ve come down with Pattie’s cough and beach party event planning is on overdrive.  I don’t have the time or energy to contemplate my disintegrating future now.

Comments (4)

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

About Pat, Diagnostics, Therapy, Transplants

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

Posted on March 11 2015 | 1,085 views

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!

Comments (15)

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