Mystery infection hanging on

My four day long, unrelenting fever is ongoing.  I described it as a “neutropenic” fever yesterday, because it felt so much like a half dozen others I’ve had in the past.  Turns out I was wrong.

Pat's beach head shotThese were asymptomatic fevers, triggered by low neutrophil (mature white blood cell) counts following my first autologous (using my own cells) stem cell transplant three years ago.  Why were my white counts so low?  Years of using IMiDs (Revlimid and pomalidomide) had pulled them down.

I got a bit of a break for a year when Velcade/dex was working for me without an assist.  But as soon as I started pomalidomide, my white counts started to drop again.

I was pleased and perplexed to learn Monday that after one month, my new CCd therapy (Cytoxan, carfilzomib and dex) was not effecting my white counts.  On the contrary, they’re as high as they’ve been since before my transplant.

That’s great news!   No reason not to continue therapy.  And if my bone pain is any indication, the new combination is working.  Like a few months after I started using pomalidomide/dex, my bone pain has significantly improved; telling me that my newer lesions are probably responding.  We’ll know after my next month long cycle at the end of May.

I did notice that my red and hemoglobin counts have dropped.  Looks like I’ll need to start following a new set of numbers.

And the bad news?  What’s causing my ongoing asymptomatic fever?  Must be an infection somewhere.  So yesterday I bird-dogged my medical oncologist, Dr. Luke, about it.  The support staff didn’t seem too concerned.  But a fever–as high as 101.4 over what was then three days–is nothing to take lightly.

Another example of how working with a specialist is a good idea.  Think the crew upstairs in the BMT unit at Moffitt Cancer Center would have taken a three day fever so lightly?  What may not concern someone else can be a big deal for someone that’s undergone a stem cell transplant; auto or allo.

Fortunately, one of the med techs flagged Dr. Luke down in the hallway, told him about my fever and showed him my numbers.  Dr. Luke is an old stem cell transplant guy himself.  He gets it.  Dr. Luke immediately prescribed Levaquin, one of the broadest spectrum antibiotics.  Levaquin has worked for me like magic in the past.  Hopefully that will do the trick.

It hasn’t yet; this thing is stubbornly holding on.

Talking it over with Pattie, it concerned her that no one seems interested in trying to figure out what’s causing my fever.  She has a point.  I could call my primary doc and try and get him to run some tests.  Or check myself into Mayo Clinic (45 minutes away) for more specialized care.  I’m not sure I trust my local hospital; it’s so small.

I reasoned that you can attack these things from either direction: identify the type of infection by running tests, or find an antibiotic that works and skip the first step.

I don’t like writing about my own medical minutia.  But there’s a take-away message here.  Once you start taking responsibility for your own care, you are the one that needs to follow through.  It can feel like performing a high wire act without a net.

In the meantime, I’ll keep repeating my new mantra: “No worries!”

Feel good and keep smiling!   Pat

About the Author

Leave a Reply

Your email address will not be published. Required fields are marked *