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News

Myeloma News Update

Posted on June 29 2015 | 177 views

So much happened today–and it isn’t over.  I’m heading to the BMT unit for yet another neupogen and Mozobil injection in a few moments.

Comments (0)

Neupogen

About Pat, Transplants

Busy day tomorrow…

Posted on June 28 2015 | 551 views

I’ve got several good friends, and a tech volunteer, working on Pat’s Myeloma Beach Party online registration.  We had a  few glitches last year that I wanted to avoid.  Unfortunately, instead of producing and testing things on a practice site, the first draft appeared live.  There are still bugs to be worked out.  But the important thing is, interest is already exceeding expectations.

Comments (12)

About Pat, News, Transplants

Skyrocketing chemo costs worst for blood cancers

Posted on June 27 2015 | 584 views

The high cost of chemotherapy drugs has been in the news a lot lately, and blood cancer is at the forefront of it all.

Comments (9)

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

About Pat, Diagnostics, Therapy, Tips, Transplants

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

Posted on June 26 2015 | 837 views

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.

Comments (23)

DR TRICOT 2

About Pat, Diagnostics, Inspirational, News, Side effects, Support, Tips, Transplants

Lots of news; good and bad

Posted on June 25 2015 | 710 views

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.

Comments (24)

1025

About Pat, Diagnostics

“Full frontal” bone marrow biopsy

Posted on June 24 2015 | 761 views

I’ve been asked from time to time why I don’t use more pictures.  I’m a writer and a bit technically challenged, so sometimes it’s my lack of patience and inability to transfer images and make them fit.  But most of the time I write instead because that’s what I do; paint a picture 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.

Comments (15)

About Pat, News, Research

International research produces promising new immunotherapy

Posted on June 23 2015 | 761 views

With so much focus on me and my Iowa trip, I’m afraid I’ve been neglecting some important multiple myeloma news.  Before I share details about my bone marrow biopsy early this morning, I want to help you get caught up.

Comments (13)

Roller coaster

About Pat, Inspirational

Your support helping me stay the course

Posted on June 22 2015 | 782 views

My day has had more emotional ups-and-downs than a roller coaster–and the afternoon isn’t even over!

Comments (22)

About Pat, Side effects

Ready or not, Iowa here I come!

Posted on June 21 2015 | 892 views

I spiked a fever Friday afternoon.  I thought it was because I finished mowing the lawn in the heat.  But Saturday the fever and headache returned.  So did dark, root beer colored urine.  Yep.  My UTI has made a comeback.

Comments (31)

Zometa

About Pat, Research, Side effects, Supplements/Drugs, Tips

Truth about bisphosphonates from a patient’s perspective

Posted on June 19 2015 | 743 views

I field a lot of questions about bisphosphonates.  The two most commonly used for myeloma patients: Aredia and Zometa.

Comments (8)

CTL019 Trial results at ASCO beyond impressive!

News, Research, Transplants

CTL019 Trial results at ASCO beyond impressive!

Posted on June 18 2015 | 702 views

This small but hopefully important story snuck by me at this year’s American Society of Clinical Oncology (ASCO) meetings earlier this month; an obscure study about a new class of anti-myeloma drugs.

Comments (1)

About Pat, News, Research, Transplants

More ways to limit GVHD. But does that negate graft vs myeloma effect?

Posted on June 17 2015 | 455 views

There is an all out debate going on among doctors and researchers in bone marrow transplant units countrywide.  Does an allo (donor) stem cell transplant need some degree of graft vs host disease in order to battle destroy multiple myeloma?

Comments (3)

My Opinion: Many secondary cancers go unreported

About Pat, Tips, Transplants

My Opinion: Many secondary cancers go unreported

Posted on June 16 2015 | 688 views

As an experienced multiple myeloma and skin cancer patient, yesterday’s study and post got me thinking.  The more I thought about it, the more it angered me.  I’m sorry, but this retrospective study left out the gaping hole in myeloma related numbers shared by many trials.  So many numbers were misleading or outright wrong.

Comments (8)

JIM BOND

Inspirational, Research, Side effects, Tips

Stem cell transplant survivors face skin cancer risk

Posted on June 15 2015 | 599 views

Yesterday was a much needed mental health day.  Pattie and I spent time working in the yard, stocked-up at Lowes and Home Depot; relaxed in the pool.  Spending so much time outside reminded me that a good friend emailed me a report last week, warning those of us that had undergone a stem cell transplant to be extra careful in the sun.

Comments (1)

News, Research

It’s official: panobinostat works!

Posted on June 13 2015 | 638 views

Novartis released final data from its PANORAMA Phase 3 panobinostat (Farydak) trial in advance of meetings (similar to ASCO or ASH) in Europe later this month:

Comments (2)

New myeloma research and a “blast from the past.”

Research, Transplants

New myeloma research and a “blast from the past.”

Posted on June 12 2015 | 652 views

I couldn’t resist passing along news that my alma mater, the University of Wisconsin, Madison, is researching ways to help our doctors know which drug might work best for us–and for how long.

Comments (5)

Sense of community among myeloma patients is strong!

About Pat, Caregivers, Inspirational, Transplants

Sense of community among myeloma patients is strong!

Posted on June 11 2015 | 718 views

Pitcher Mel Stottlemyre’s extended remission came up at a support group meeting I attended yesterday; one of the patients shared how he’s been in complete response and drug free for over nine years.

Comments (11)

MEL STOTTLEMYRE

Books, Caregivers, Inspirational, News, Side effects

Baseball great Mel Stottlemyre facing relapse

Posted on June 10 2015 | 907 views

Before I pass along information about Mel Stottlemyre, I wanted to follow-up on my post about daratumumab from yesterday; the companies involved have officially applied for FDA approval.

Comments (3)

Dr. Rajkumar shares list of most important ASCO trials

News, Research

Dr. Rajkumar shares list of most important ASCO trials

Posted on June 09 2015 | 821 views

Renowned Tweeter, Cindy from New Jersey, @Myeloma Teacher, passed along Dr. Vincent Rajkumar’s Top Seven myeloma-related abstracts from this year’s American Society of Clinical Oncology annual meetings in Chicago:

Comments (3)

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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

Registration Begins Friday, April 1st, 1-2pm Registration Includes: Access to all speakers and activities, four meals (Friday dinner, Saturday Lunch and Dinner, Sunday Brunch), Swag Bag and a T-Shirt. Register By December 31, 2015 $45 Register in 2016 $60 Do you want to Sponsor Someone? Please fill the Registration form.
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Location


Womens Club 201
Jean Lafitte Blvd
Fernandina Beach, FL 32034

Event Fees:


$ 45.00 Registration Before 31st Dec 2015
$ 60.00 Registration After 1st Jan 2016

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