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Relapsed/refractory patients face difficult choices (Part Two)

About Pat, Therapy, Transplants

Relapsed/refractory patients face difficult choices (Part Two)

Posted on September 22 2014 | 461 views

Friday’s post really opened up a can of worms!  I expected that.  But I don’t want to spend the next few days debating past therapy choices.  I’m trying to convey how I think and feel about the decisions that I’m facing now–and the more difficult ones I’m going to be forced to make a few months down the road.

Comments (17)

More about myeloma survivor and baseball star, Don Baylor

Inspirational, News

More about myeloma survivor and baseball star, Don Baylor

Posted on September 21 2014 | 371 views

Earlier this month I passed along good news about Don Baylor following his unfortunate injury last spring:

Comments (7)

canchew

Nutrition, Supplements/Drugs, Tips

Tired of taking tablets and capsules? Chew supplement gum!

Posted on September 20 2014 | 297 views

Chewing gum: the newest way to take daily supplements?  I wrote a pair of posts about it recently on HelpWithCancer.org

Comments (5)

Relapsed/refractory patients face difficult choices

About Pat, Caregivers, Side effects, Support, Therapy, Transplants

Relapsed/refractory patients face difficult choices

Posted on September 19 2014 | 765 views

I reported back Wednesday afternoon after meeting with my myeloma specialist, Dr. Roy, at Mayo Clinic.  The contrast between Dr. Roy’s slow and steady incremental therapy approach, and the “hit the myeloma hard” Total Therapy approach preferred by Dr. Tricot on Wednesday night’s broadcast couldn’t have been more stark.

Comments (20)

Inspirational, News, Research, Transplants

Would aggressive myeloma treatment cure more patients?

Posted on September 18 2014 | 697 views

I’m going to delay posting details about my discussion yesterday with Dr. Roy about whether to transplant or not to transplant until Friday.  Last evening’s Myeloma Cure Panel discussion is an ABSOLUTE MUST-LISTEN for any myeloma patient that has only been treated for one year or less.

Comments (11)

Dr. Guido Tricot

About Pat, News

Busy day: Mayo Clinic meeting and Cure Talk broadcast about MRD tonight

Posted on September 17 2014 | 424 views

Before I share details about my meeting with Mayo Clinic myeloma specialist, Dr. Roy, this morning, I want to remind everyone that I will be part of a panel questioning Dr. Guido Tricot about the importance of minimal residual disease (MRD).

Comments (0)

Pomalidomide hang-over

About Pat, Diagnostics, Side effects, Tips

Pomalidomide hang-over

Posted on September 16 2014 | 475 views

I felt pretty lousy Sunday, yesterday afternoon and now this morning.  Me?  A hangover?  I don’t think the one beer I had Saturday evening while watching college football caused it.  Nope, it’s the pomalidomide.

Comments (7)

stacy 1

Research, Therapy

More about Mayo Clinic measles virus trial

Posted on September 15 2014 | 682 views

Remember the excitement when news about Mayo Clinic’s experimental measles virus therapy broke in May?  A Minnesota woman responded so well to treatment that some called it a “miracle” or “cure.”  There was a lot of misinformation about the new therapy; the thought of infusing millions of doses of measles vaccine into a single patient was hard to comprehend.

Comments (15)

Tom

Caregivers, Inspirational, News, Transplants

Hope for a cure: Tom’s allo transplant journey (Part Twenty Three)

Posted on September 14 2014 | 495 views

Speaking of difficulties associated with long term steroid use,  I hadn’t heard from our dear friend, Tom, the allo transplant patient from Ohio that I’ve been covering since last year.  So I emailed Tom and his wife, Whitney, asking for an update.  Here’s her well crafted and heartfelt response:

Comments (3)

Side effects, Therapy, Tips

Best to take dexamethasone all at once

Posted on September 13 2014 | 462 views

In the past there has been some debate about how and when it’s best to take large doses of dexamethasone; something most of us need to do at some point during out ongoing therapy.

Comments (5)

Dr. Mass

Caregivers, Inspirational, Research, Tips

Support groups and clinical trials can help us live longer

Posted on September 12 2014 | 481 views

Last month I met a physician and multiple myeloma patient, Mike Mass, and his charming wife and caregiver, Marilyn, at a support group meeting in Jacksonville.

Comments (4)

Tom Brokaw

News

Tom Brokaw responding well to myeloma therapy

Posted on September 11 2014 | 754 views

Tom Brokaw was a guest host on the Today Show this morning.  When asked how he was feeling, Mr. Brokaw responded positively.

Comments (17)

Dr. Donald Abrams complementary cancer therapy interview revisited

Inspirational, Nutrition, Side effects, Tips

Dr. Donald Abrams complementary cancer therapy interview revisited

Posted on September 10 2014 | 610 views

I had the privilege of interviewing a renowned alternative medicine expert, oncologist Donald Abrams, last January on a Cure Talk broadcast.  One of my most popular posts ever, I thought it was worth a second look and listen:

Comments (2)

I can live in no-mans-land…

About Pat, Diagnostics

I can live in no-mans-land…

Posted on September 09 2014 | 647 views

I reference my M-spike often.  Some cancers don’t have good blood markers.  But doctors can reliably monitor the progression of multiple myeloma in the majority of patients by tracking how much monoclonal protein is floating around in their blood or urine, using a serum protein electropheresis (SPEP) test.

Comments (12)

Don Hamilton

RIP

Donald J. Hamilton 1932-2014

Posted on September 08 2014 | 602 views

In July I ran a pair of Patient Snapshot posts about multiple myeloma patient, Don Hamilton, and his wife and caregiver, Joan:

Comments (0)

Amelia Island summer 2014 008

About Pat

Amelia Island magic

Posted on September 07 2014 | 531 views

Pattie and I have been pleased with how quiet the beaches are here on Amelia Island, even during what should be the busy summer season.  Add a bit of bad weather and we can walk a mile on the beach without seeing anyone else.

Comments (5)

Cleave Bio logo

News, Research

Another new myeloma drug begins Phase 1 trial

Posted on September 06 2014 | 620 views

Wouldn’t it be wonderful if one of these shot-in-the-dark studies produced a real anti-myeloma winner?

Comments (2)

Don Baylor

Inspirational, News

Don Baylor update

Posted on September 05 2014 | 547 views

On opening day this spring, former baseball great, batting coach and multiple myeloma survivor, Don Baylor, broke his leg while catching the ceremonial first pitch.

Comments (5)

Research, Supplements/Drugs, Therapy, Transplants

How do outsiders view multiple myeloma?

Posted on September 04 2014 | 701 views

Those of us in the online myeloma community live in an information bubble of sorts.  We learn, understand and use myeloma related vocabulary.  After a while it becomes second nature.  But how does the outside world view our cancer?  How can they begin to understand what it’s like living this way?

Comments (3)

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