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17 05, 2015

Therapy karma catches up to me

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I understand some of you have endured difficult side effects while using Revlimid and/or Velcade.  Sure, walking around borderline neutropenic often left me feeling a bit fatigued.  But I was one of the lucky ones; except for later in the day of RVD therapy--which left me feeling wiped-out and fluish--Rev and Velcade were no big

1 05, 2015

Living to Make a Difference: Mike Katz (Part Two)

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Writer Greg Brozeit reminds us that any myeloma patient that has ever taken dexamethasone owes Mike Katz a heartfelt "Thank you!" Living to Make a Difference: Mike Katz (Part Two) By Greg Brozeit I was a witness to the second great clinical achievement for which Mike was largely responsible. Every year at the IMF’s annual

28 04, 2015

It’s the dex!

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Dr. Tricot chose to administer CcD every other week, so my bone marrow would have time to recover between cycles.  I started round two of my Cytoxan/Kyprolis/dexamethasone (CcD) yesterday afternoon.  If you recall, the combination really wiped me out two weeks ago. So I get Kyprolis infusions (common name, carfilzomib; hence the small "c") on

13 04, 2015

Cytoxan works surprisingly well for some patients

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Such a simple abstract, with so many lessons to learn.  Example of how Cytoxan and dex--at low doses--helped a relapsed patient in kidney failure stay stable for almost two years: Long-term Control in a Patient with Refractory Multiple Myeloma by Oral Cyclophosphamide and Dexamethasone Abstract Background: Prognosis of patients with multiple myeloma (MM) has substantially

13 09, 2014

Best to take dexamethasone all at once

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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. When I looked into it early in my myeloma journey, I was told it didn't matter when or how I took

4 08, 2014

Do I love DEMON DEX?

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Dexamethasone may be slowly destroying my body, but for three days a week, I love it! There are actually a lot of closet dexamethasone fans out there.  I hear from them regularly.  They almost always suffer from significant bone involvement (bone damage) caused by their multiple myeloma. Sure, I get an energy boost after taking

5 06, 2014

Tomorrow’s Mayo Clinic visit is “the combo platter; the whole enchilada”

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No ASCO blockbusters.  Some significant data was presented.  But as I mentioned yesterday, nothing time sensitive.  So today I would like to write briefly about what could be a life changing meeting tomorrow at Mayo Clinic. OK, I'll admit it.  I'm apprehensive about my appointment with my new myeloma specialist, Dr. Roy.  My first impressions

29 05, 2014

Truck loaded and on our way!

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As I mentioned in a post on May 21, we have planned three moving days.  The first was a preliminary move to get needed tools, bedding and that sort of thing over to the new "fixer" on Fernandina Beach.  Today's is "the big one;" three strong guys and a big truck. And the third?  My

24 01, 2014

Even experienced myeloma survivors have bad days

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Sometimes our bodies don't react to medications the way we have come to expect.  Yesterday was an unsettling and unpleasant reminder of that. Last week I received some pretty good news.  My monoclonal protein level--measured by my M-spike--remained stable.  Wednesday I saw my medical oncologist, Dr. Malhotra, then continued on to infusion for my sub-q