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According to ASCO, a neutropenic fever is a very dangerous thing

About Pat, News, Side effects, Tips

According to ASCO, a neutropenic fever is a very dangerous thing

Posted on August 20 2014 | 290 views

It is so sad to hear that Arnie has passed away.  We met him briefly at your beach party, and I am sorry now that I didn’t take the time to visit longer.  I think back when I was first diagnosed, and I became somewhat familiar with the regulars who posted here almost five years ago now.  I wonder how man of those voices are silent now…

Comments (0)

Patient Snapshot Update: Chuck from Georgia

Inspirational, News, Tips, Transplants

Patient Snapshot Update: Chuck from Georgia

Posted on August 19 2014 | 304 views

The promise of becoming part of exciting, new clinical trials can be intoxicating.  But most only work for less than half of the patients that sign up.

Comments (1)


News, Research

Immunotherapy clinical trial for smoldering myeloma looking for patients

Posted on August 18 2014 | 433 views

I’m feeling much better.  Time to focus on something other than me!

Comments (6)

fernandina beach

About Pat, Side effects, Tips

MEDICAL UPDATE: News is mixed

Posted on August 17 2014 | 714 views

Thanks for all of your thoughtful comments and emails!

Comments (17)

About Pat

I’m sick…

Posted on August 16 2014 | 649 views

Never a dull moment.  I woke up last night with a 101 degree fever.  It’s my fault; I pushed too hard this week.

Comments (29)

Dr. Lawenda

Research, Supplements/Drugs, Tips

IP6 follow-up

Posted on August 15 2014 | 366 views

A few days ago I wrote a skeptical post about a supplement called IP6.  I have received a number of comments and emails supporting the use of IP6 since then.  I’m good with that.  It may or may not help slow the advance of multiple myeloma.

Comments (0)

Have multiple myeloma and need help?  Visit a support group!

About Pat, Caregivers, Inspirational, Support, Transplants

Have multiple myeloma and need help? Visit a support group!

Posted on August 14 2014 | 352 views

I was fortunate to be a guest at the multiple myeloma support group that meets monthly at Mayo Clinic in Jacksonville last evening.  But it wasn’t my first visit.  Five years ago I drove across Florida to speak to the group and promote my first book, Living with Multiple Myeloma.

Comments (2)

Research, Supplements/Drugs

Is immunosupplement, IP6, the real deal?

Posted on August 13 2014 | 801 views

Anyone familiar with a supplement called IP6?  A reader, Richard, swears it has stopped his myeloma in its tracks when other more conventional meds weren’t helping at all.

Comments (9)

Caregivers, Side effects, Support

Myeloma patients deserve more services designed to improve their quality of life

Posted on August 12 2014 | 439 views

Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Comments (2)

Multiple myeloma wins round two

About Pat, Diagnostics, News, Tips

Multiple myeloma wins round two

Posted on August 11 2014 | 1,017 views

Disappointing news.  After dropping my M-spike from 0.7 to 0.4 the first month, my spike jumped back up to 0.6 this month.  Two months on pomalidomide and I’m right back where I started.

Comments (27)

Velcade stopped working?  Consider trying it again later

News, Research, Tips

Velcade stopped working? Consider trying it again later

Posted on August 10 2014 | 517 views

On the surface this doesn’t seem like big news.  But grind-it-out studies like these are important.  They help medical oncologists that aren’t going to experiment off-label know what to do after a patient relapses.

Comments (2)

Caregivers, Support, Transplants

Reality check for a myeloma survivor

Posted on August 09 2014 | 941 views

Remission.  Complete response (CR).  Stringent complete response (sCR).  Minimal residual disease (MRD).  All technical terms that seemingly have precise and specific meanings.

Comments (13)


About Pat, Side effects, Supplements/Drugs, Tips

Let’s have some fun: Rate your favorite pain killers

Posted on August 08 2014 | 677 views

Helping a good friend try and balance her pain meds after surgery last week, and writing Monday’s post got me thinking.  What are my favorite pain killers?  My drugs of choice?

Comments (28)

Majority of patients taking pomalidomide experience bone pain

About Pat, News, Side effects

Majority of patients taking pomalidomide experience bone pain

Posted on August 07 2014 | 616 views

I learned something unexpected this week.  As you know, I’ve been taking pomalidomide (Pomalyst) now for almost two months.  From a numbers standpoint it seems to be working.  But my bone pain has escalated alarmingly.  Apparently they call it “breakthrough pain.”  My ongoing, relatively low dose of oxycodone is great at dulling pain caused by past myeloma bone involvent.  But it isn’t helping the sharp pain emanating from active lesions at the edge of both iliac crests and at the base of my neck.

Comments (18)

Lori Melancon

Research, Side effects, Therapy

Kyprolis isn’t perfect, but I’ll take it (someday)

Posted on August 06 2014 | 495 views

As promised, here’s more about the new Kyprolis (carfilzomib) ASPIRE study I introduced you to yesterday.

Comments (2)

News, Research

BREAKING NEWS: Kyprolis/Revlimid/dex combination significantly extends PFS

Posted on August 05 2014 | 627 views

I wanted to share an email and press release I received yesterday from Lori Melancon, Senior Director of Corporate Affairs for Onyx Pharmaceuticals:

Comments (4)

Do I love DEMON DEX?

About Pat, Tips

Do I love DEMON DEX?

Posted on August 04 2014 | 662 views

Dexamethasone may be slowly destroying my body, but for three days a week, I love it!

Comments (15)

Research, Tips

Does quinine help elotuzumab work better?

Posted on August 03 2014 | 446 views

A week before Arnie Goodman passed away, I received a heartfelt email from George, a multiple myeloma survivor from Canada:

Comments (0)

News, Research, Side effects, Tips

BREAKING NEWS: For many, more Kyprolis is better

Posted on August 01 2014 | 845 views

A Stage 2 clinical trial has confirmed what many myeloma specialists already knew: increasing Kyprolis dosing improves patient outcomes.

Comments (6)


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