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About Pat, Diagnostics, Side effects, Transplants

I’m not dead yet!

Posted on February 08 2016 | 742 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 (27)

0206161422

About Pat, Side effects, Support, Transplants

Tough day for me and my blood

Posted on February 06 2016 | 1,099 views

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

Comments (14)

About Pat, Diagnostics, Side effects, Transplants

My world turned upside down

Posted on February 06 2016 | 1,154 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 | 745 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 | 483 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 | 253 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 | 637 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.

Comments (3)

0129160904a

About Pat, Diagnostics

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

Posted on January 30 2016 | 800 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.

Comments (14)

MMRF logo

Inspirational, News

Cure Magazine searching for myeloma heroes

Posted on January 29 2016 | 597 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 | 658 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 | 887 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 | 922 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)

David Bowie

Caregivers, News, RIP, Support, Tips

We need more open and honest conversations about multiple myeloma

Posted on January 22 2016 | 1,116 views

One of my pet peeves: when celebrities don’t disclose the type of cancer that they’re battling. They could at least devulge it in their obituary. Most of the rest of us disclose it. Obviously I’ve done so much more. I’m not implying everyone needs to be as open as I am. But come on: inquiring minds want to know!

Comments (8)

MMRF 2015 myeloma year in review

News, Research, Support

MMRF 2015 myeloma year in review

Posted on January 21 2016 | 740 views

I’m part of a Cure Talk Radio broadcast in a few hours featuring Multiple Myeloma Research Foundation co-founder, Anne Quinn Young. If you can’t listen live, I’ll pass along a link so you an listen later.

Comments (1)

It shouldn’t be so hard to get excellent care

About Pat, Diagnostics, Side effects, Tips, Transplants

It shouldn’t be so hard to get excellent care

Posted on January 20 2016 | 1,284 views

Reliable healthcare. One would think all of the money spent on our behalf would guarantee a consistent standard of care. Au contraire!

Comments (7)

PLATELETS

About Pat, Diagnostics, Side effects, Transplants

Didn’t see that coming…

Posted on January 19 2016 | 1,438 views

No fever. Resting heart rate down to 80 beats a minute. Oral supplementation at home brought my potassium and magnesium levels up to normal levels. My oncology nurse, Deb, started the IV in my left hand on the first stick Monday. What could go wrong?

Comments (18)

About Pat, Caregivers, Side effects, Support, Tips

Medical Update: Stinky news

Posted on January 18 2016 | 1,264 views

Rough weekend. As I explained in a post last week, I’m not used to backsliding–post transplant–once I start improving.

Comments (14)

Blood Glucose, MGUS, Myeloma & Metformin (Part Nine)

About Pat, Caregivers, Inspirational, Nutrition, Research, Side effects, Support, Tips, Transplants

Blood Glucose, MGUS, Myeloma & Metformin (Part Nine)

Posted on January 16 2016 | 1,036 views

A lot has happened since I ran two of the final installments about the importance of controlling blood glucose by Danny Parker:

Comments (1)

Maintenance therapy side effects nothing to brush off

About Pat, News, Nutrition, Side effects, Tips, Transplants

Maintenance therapy side effects nothing to brush off

Posted on January 15 2016 | 1,318 views

I’m part of the club: experiencing side effects caused–in part–by ongoing maintenance therapy.

Comments (16)

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Pat’s Myeloma Beach Party


2016 Pat's Myeloma Beach Party

Friday, Apr 1,2016 - Sunday, Apr 3,2016

Time: 6:00am - 11:45pm

Pat's Myeloma Beach Party

Check In Begins Friday, April 1st, Noon-1:30pm Registration Includes: Access to all speakers and activities, four meals (Friday dinner, Saturday Lunch and Dinner, Sunday Brunch), Swag Bag and a T-Shirt. Registration $60 Do you want to Sponsor Someone? Please fill the Registration form. Click on "More Info" for a list of Hotels available in the area.      
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Location


Womens Club
201 Jean Lafitte Blvd
Fernandina Beach, FL 32034

Event Fees:


$ 60.00

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