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It’s Almost Time!

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It’s Almost Time!

Posted on March 30 2016 | 1,956 views

AMELIA SUNRISE

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We Still Have Room!

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We Still Have Room!

Posted on March 26 2016 | 1,288 views

We will all be meeting in Fernandina Beach, FL next Friday already! The excitement continues to grow as we continue to get everything in place.

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PatsBeachPartyMeditation2015

Pat's Myeloma Survival School

We are only 10 days away!

Posted on March 22 2016 | 1,185 views

Can you believe it?  In 10 days, we will all be gathering for the 2016 Pat’s Myeloma Survival School in Fernandina Beach, FL.  We are so excited to see everyone and share great information for both patients and caregivers from our amazing speakers. We are looking forward to spending time with all of our friends, old and new and remembering all the fun we have while we are there! Also, a part of the weekend is our fun 5K Beach Walk and a Silent Auction with unique items from all different geographical areas.  Registration is only $60/person and includes access to all speakers and activities, 4 meals and a swag bag. If you have not registered yet and want to join us for this unforgettable weekend, you can still register here:

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Womens Club Pic

Pat's Myeloma Survival School

Great News-Focus Groups are Back!

Posted on March 09 2016 | 1,644 views

Fernandina Beach Women's Club

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Pat's Myeloma Survival School

Pat Gave Us His All, And Continues To Do So With An Outstanding Survival School. By Gary Petersen

Posted on February 25 2016 | 2,580 views

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Pat’s Beach Party Memorial is now Pat’s Myeloma Survival School, and before he so tragically left us, he put together an outstanding program for the newly diagnosed and long term myeloma survivor.  As only Pat could do, he has lined up some of the best and most knowledgeable myeloma doctors and patient advocates to present the World of Myeloma According to Pat.

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Countdown Has Begun!

Pat's Myeloma Survival School

Countdown Has Begun!

Posted on February 22 2016 | 2,692 views

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Comments (10)

PatBdayBallon2016

About Pat

A Special Tribute to an Incredible Friend

Posted on February 12 2016 | 6,661 views

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Comments (38)

About Pat, Diagnostics, Side effects, Transplants

I’m not dead yet!

Posted on February 08 2016 | 11,953 views

The commonly used name here for plasmapheresis is plasma exchange. I”m being hooked up for my third, three hour round of plasma exchange. Honestly, I’m in pretty bad shape.

Comments (111)

0206161422

About Pat, Side effects, Support, Transplants

Tough day for me and my blood

Posted on February 06 2016 | 4,163 views

Plasmapheresis and dialysis on the same day? My body is buzzing; literally buzzing. But it all seems to be working.

Comments (16)

About Pat, Diagnostics, Side effects, Transplants

My world turned upside down

Posted on February 06 2016 | 4,493 views

As difficult as my myeloma journey has become, the one silver lining has always been my excellent kidneys; no worries on that front. That all changed today. I learned today that my kidneys are/have failed.

Comments (35)

Dr. Guerrero

About Pat, Diagnostics, Side effects, Transplants

Medical mystery worthy of reality TV

Posted on February 05 2016 | 3,102 views

I’m a medical mystery. Why should I be surprised? Some of the medical news is good. But overshadowing basic improvement are a long list of unanswered questions. I’ve never had more blood drawn in my life!

Comments (3)

Baptist

About Pat, Caregivers

Enough drama already!

Posted on February 04 2016 | 2,560 views

Ongoing struggles recovering from my second stem cell transplant in six months make it easy to write compelling posts. But enough already! I was admitted to our local Baptist hospital last night after an emergency room visit that revealed I had pneumonia that was getting worse by the hour.

Comments (3)

News, Research

Kyprolis effective for some patients that have used Velcade

Posted on February 02 2016 | 1,904 views

MedPage Today reported on a new, retrospective study involving Kyprolis over the weekend. It makes my myeloma specialist, Dr. Tricot, look pretty smart for using Kyprolis as part of my three drug post transplant consolidation therapy.

Comments (0)

0129161046

About Pat, Side effects, Tips, Transplants

I’m celebrating 100 days post tandem today

Posted on February 01 2016 | 2,325 views

It’s been 100 days since I received an infusion of over 8 million of my own stem cells in October. Even though it was my second stem cell transplant in less than six months, this is uncharted territory for me.

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About Pat, Diagnostics

No pants? A comical look back at my trip to Iowa City

Posted on January 30 2016 | 2,263 views

Back in December I experienced an unpleasant ordeal after I was blindsided by C. diff while traveling to the University of Iowa for follow up tests ten weeks after the second of my two stem cell transplants. But as those close to me know, there was a comical edge to my experience. Yesterday I discovered the transcript of a post I’d started, highlighting my crazy experience in Iowa City. Here’s an inside look at my “out of my clothes” experience.

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MMRF logo

Inspirational, News

Cure Magazine searching for myeloma heroes

Posted on January 29 2016 | 2,527 views

I’m always writing about a new myeloma hero that I’ve met–or someone that we’ve lost. Sounds like Cure Magazine is determined to identify and recognize them. They even use the term, “myeloma hero.”

Comments (6)

MT K

Inspirational, Research, Tips

Isn’t battling myeloma hard enough without having to raise money, too?

Posted on January 27 2016 | 1,576 views

An amazing over-the-top (pun intended) multiple myeloma awareness and fundraising mountain climbing adventure scaling Mr. Kilimanjaro sponsored by the MMRF:

Comments (4)

MEDS

About Pat, Side effects, Therapy

Can they pump me full of any more meds?

Posted on January 25 2016 | 2,231 views

Not to say that there weren’t hiccups, but I was administered my Kyprolis IV late this morning. I took 40 mg dex, and 3 mg pomalidomide, after I learned my platelets had recovered enough to proceed. I tried to get a few things done this afternoon, but basically passed out.

Comments (6)

yawn

News, Therapy

FDA expands access to Kyprolis. Big news?

Posted on January 24 2016 | 2,221 views

Friday the FDA expanded it’s approval of how and when carfilzomib (Kyprolis) can be used. Trumpets sounded. I counted eleven industry news outlets that led with the story. My reaction? Big yawn.

Comments (12)

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