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Inspirational, News, Research

HBO introduces the world to multiple myeloma

Posted on March 02 2015 | 267 views

I missed the HBO special, “Killing Cancer,” that aired last week.  Fortunately, I was able to catch a replay this weekend.  Measles viral therapy for multiple myeloma is one of the featured therapies.

Comments (8)

Fernandina Beach

Inspirational, Support

Registration fees help offset travel expenses for patients in need

Posted on March 01 2015 | 201 views

Thinking about coming to our beach party but worried about the cost?  We may be able to help.

Comments (0)

Total Therapy a possible cure?

About Pat, Research, Therapy

Total Therapy a possible cure?

Posted on February 28 2015 | 476 views

My good friend, Gary Petersen, recently returned from his annual visit to UAMS in Arkansas with a clean bill of health.  He’s not far from being a decade myeloma free.  I have written several times, asking why more newly diagnosed patients aren’t encouraged to try Total Therapy.  The upside is literally off-the-charts.  Gary’s remarkable run is a real world example of how well some patients respond.

Comments (3)

About Pat, Supplements/Drugs, Tips

Supplement helps control my PM leg cramps

Posted on February 27 2015 | 410 views

Leg cramps.  I’ve been trying to figure out how to stop them for years.

Comments (6)

Panobinostat opens to mixed reviews

News, Research

Panobinostat opens to mixed reviews

Posted on February 26 2015 | 247 views

Panobinostat three days in a row?  Have your eyes glazed over yet?  I understand some of you aren’t interested in drug development details.  But mixed reviews or not, FDA approval of panobinostat is a big deal.

Comments (0)

Approve panobinostat despite risk of serious side effects?  Why not?

News, Side effects, Supplements/Drugs, Therapy

Approve panobinostat despite risk of serious side effects? Why not?

Posted on February 24 2015 | 398 views

I promised an update on yesterday’s surprise FDA approval of panobinostat.  I hope the controversial drug works better than it’s new trade name: Farydak.  Who the heck came up with that?

Comments (2)

News

Shocking about-face: FDA approves panobinostat

Posted on February 23 2015 | 359 views

In an unexpected move today, the FDA approved the new myeloma therapy, panobinostat.

Comments (0)

Dr J

Inspirational, Research, Supplements/Drugs

Myeloma therapy advances big and small

Posted on February 23 2015 | 508 views

Speaking of new treatment options, here’s an excerpt from an excellent summary of what I consider to be “stopgap” myeloma therapy measures until new immunotherapy technology moves front and center:

Comments (12)

Running out of treatment options?  FDA may be able to help

News, Research

Running out of treatment options? FDA may be able to help

Posted on February 22 2015 | 321 views

The FDA is considering a radical new, streamlined approach to granting access to experimental drugs.  For those of us that desperately need more myeloma treatment options, I can’t imagine better news.

Comments (0)

The search is on for underfunded clinical trials that can help us NOW!

News, Research

The search is on for underfunded clinical trials that can help us NOW!

Posted on February 21 2015 | 175 views

I ran this press release several weeks ago.  There’s still time for researchers and myeloma specialists to submit their ideas for funding:

Comments (0)

About Pat, Diagnostics, Side effects, Support, Tips

I want more days to walk along the beach

Posted on February 20 2015 | 658 views

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?  You have two good specialists right here (in Florida).”

Comments (18)

image001

News

BREAKING NEWS: Revlimid receives expanded FDA approval

Posted on February 19 2015 | 330 views

I received some good news from Eliza Schleifstein with Cegene.  She passed along this information for me to share:

Comments (0)

POW!  Pom doing a number on my mind!

About Pat, News, Side effects, Tips, Transplants

POW! Pom doing a number on my mind!

Posted on February 18 2015 | 623 views

BAM!  POW!  What day is it again?  I felt dazed, confused and forgetful a few cycles into my initial pomalidomide therapy.  Reminding me that pomalidomide (Pomalyst) is much more potent than Revlimid, Dr. Roy suggested we cut the dose back to 3 mg.  That helped for the first couple of months.  But the last few days I’ve noticed I’m really “out of it” again.  And last night things got really bad.

Comments (7)

Answers about all things myeloma

News, Research, Support, Tips

Answers about all things myeloma

Posted on February 17 2015 | 437 views

Here’s a more conventional way to learn about multiple myeloma.  I’ve recommended Andrew’s Schorr’s Patient Power website in the past, and I’ve been interviewed by Andrew and others on his team.

Comments (0)

Mambo for Myeloma

About Pat, Caregivers, Inspirational, Research, Support

Another creative way to get the word out

Posted on February 16 2015 | 365 views

There are lots of different ways to get the word out about multiple myeloma.  Here’s a fun, silly one, courtesy my newly adopted, North Florida support group doing the mambo for myeloma:

Comments (4)

Support

Reaching patients in need can be challenging

Posted on February 14 2015 | 310 views

Wednesday I promised to “write about the challenges facing us as we try to get important, sometimes life saving information out to those that can use it most.”  The quality of information shared at these meetings was invaluable. Problem is, we were singing to the choir! Most in attendance didn’t need the information nearly as much as so many that weren’t there. The question remains: If knowledge is power, how do we get it to those that need it but don’t attend meetings or have access to a computer?

Comments (2)

Sanofi logo

News, Research

BREAKING NEWS: A tale of two promising myeloma therapies

Posted on February 13 2015 | 728 views

I’m delaying a follow up post I’ve been working on, Reaching patients in need can be challenging, to bring you some important news concerning two important new drugs–ixazumib and SAR650984–and the companies that make them.

Comments (6)

Dr. Ghobrial

Caregivers, Inspirational, Other, Transplants

Inspiring support group energy! Cure Talks broadcast tonight.

Posted on February 12 2015 | 494 views

It has been an amazing week.  Thanks so much for all of your congratulatory posts, emails and phone calls.  A person’s 59th birthday isn’t normally a memorable one, but my readers have made mine special.  But my birthday announcement was just the tip of the iceberg.  My visits to support groups in Ocala and Jacksonville were real eye openers for me.

Comments (0)

59 years and I WANT MORE!

About Pat, Inspirational

59 years and I WANT MORE!

Posted on February 11 2015 | 935 views

Today is my 59th birthday.  Considering the Mayo Clinic specialist that admitted me said the median life expectancy for a Stage 2, multiple myeloma patient my age (with such extensive bone damage) was a short 43 months, I’m ecstatic to still be around!

Comments (35)

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