9-30-10 Thursday

Status: 9.0/10.  Feeling  a little fatigued of late, most likely from the sorafenib I’m taking, and I’m just getting over a cold transmitted from school to the kids to Lisa and then to me.  Amazing how these little viruses work.

Events:  An excellent day and chat with our oncologist at Hopkins.  Getting up there was a hassle with bad weather and flash flood warnings up and down the East coast, jack-knifed trucks and wrecks all over the place.  My oncologist was all smiles – the bone marrow from last week was totally normal – just what he, and we, were looking for.  Even the flow cytometry (a very sensitive measure looking at individual cells) showed no evidence of leukemia.  Brought a big smile to Lisa’s face. 

Now, we both know, as does our oncologist, that somewhere hiding in some crevice is a leukemia cell, somewhat shell-shocked from all the previous chemotherapy, mending its wound, but still alive.  And just as my own marrow has resurrected itself from the poisonings, this guy will come back too if not disposed of.  Hence the soon hoped for transplant.  The donor received his/her evaluation today, and preliminary messages are that we may be on the schedule for our next marathon in about 2 weeks.

Comments:  During our visit, our oncologist relayed that one of the evaluation test results was positive.  It was my RPR (rapid plasma reagin) test.  That’s the blood test that many states require before they will issue a marriage license – it’s a test for syphilis.  My RPR had previously been negative.  At oncology conference he had asked his colleagues if they knew anything that would cause a test that was negative one month ago to turn positive.  One of the wags attending quipped, “Depends on what he’s been doing the last month.”  So much for medical humor.

The RPR is a screening test that looks for antibodies.  It’s about 100% sensitive, which means it will pick up virtually every case, exactly what you want in a screening test.  But it will also pick up other conditions as well, such as mine, which was a biologic false positive.  I’ve had so many medicines and procedures and weird things going on in my body that apparently some proteins in my blood made the test show up positive.

  It’s much like a thermometer.  It’s a very good screening device for a bacterial infection.  In fact, it’s the device they use on me in the hospital every 4 hours looking for an infection.  But not everyone who has a fever has a bacterial infection or even an infection at all.  To confirm there’s an infection we do cultures, which are more exact and costly.  But if you’re trying to pick up every infection, a very sensitive screening test like temperature is a good, fast, and cheap way to do it.  The RPR test is the same.  To confirm whether a patient actually has syphilis, you have to do another test looking for specific antibodies to the bacteria that causes syphilis.  They did, and of course mine was negative.

 We’ll keep you up to date on our schedule.

Love,

-Bruce

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8 Responses to “”

  1. Judy and Ken Freedman Says:

    A great day for you is a GREAT day for us! Looking forward to more good news!

  2. wendy Says:

    I smell a cure… dont’ we all… yahoo…. you’ve been a very good boy and santa claus is coming to town..

  3. Sheryl Stolberg Says:

    Hooray! That is the best news ever. I am so happy.

  4. Margot Mahoney Says:

    Wonderful news! Your hard work is paying off! And so glad that final test was negative too! Best false positive story I have heard in years. Keep smiling!

  5. Bill Schaffner Says:

    Bruce:

    Congratulations on the marrow result! This result violates that dictum core of the news business: the usual is not news. In this instance, normal is headline news.
    Am clapping (more medical humor) that you are confirmed not to have bad blood. Makes one wonder just how often all that screening turns up false positives of all kinds. If I were more mathematically inclined, I’d fool around with this – – In the meantime, I’m musing on how often this requires discussions with patients, more venepunctures, additional expense, delays in starting treatment, etc.
    Hope y’all remained dry during the east coast dulge. Enjoy the weekend!

    Bill

  6. joel steinberg Says:

    We used to see the occasional false RPR at M. D. Anderson. I suppose from all the weird proteins and sera floating around. M. and I await further news on your transplant. Joel S.

  7. Penelope Douglas Says:

    Hey Bruce,

    Go Team!!Yay…good news about the marrow result! Seems a pity to mess things up with the necessary evil of a bone marrow transplant. You know…”if it ain’t broke…” but I guess it is broke…sort of.
    Anyway…hope you get over your fatigue soon. So typical right…kids get colds from school… refine them a bit…make them a little more virulent…and then give them to us. Yuck!
    Take care and enjoy your weekend with the family. I hear the weather is going to get much better!!
    XO

  8. Tom Linden Says:

    I hope you have a good weekend and get lots of R&R. I’m thinking of you, Bruce.

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