Wednesday, July 24, 2013

When does a negative test not feel so negative?

When instead of saying "the original protein cannot be detected", as most of my tests from Arkansas have said, it comes back "the original M protein may be present.  Multiple indistinct bands are found in the gamma region in the area of the original protein."

CR at UAMS assures me it is negative.

I do not like it, Sam I am.  If I wasn't rushed here, I'd come up with some witty play on Dr. Seuss using the words "blood" and "protein" and "monoclonal" even though no rhymes come immediately to mind with respect to any of them.

The local test said there's no monoclonal protein.  The same blood tested at UAMS comes out as above.  So UAMS is more sensitive.  Ugh.

UGH I say.

Oh well.  Probably nothing, and there's nothing I can do about it even if it *is* something.  Come September, the MRI should tell all.  If those stupid pits are gone, perhaps I can breathe a bit easier.


  1. Nick, thanks for sharing this post. I have been following your blog, off and on, since I was diagnosed in Jul of 2011. I am in a a very good partial remission and currently still taking Revlimid as maintenance. I am waiting for the day when I get a report like yours so your post made me think about what my response will be when that occurs. While it may seem bad to say your response was encouraging I am sure you can understand how that is possible.

  2. <3 Hang in there my friend. You have my love and best wishes

  3. Hi Nick, I have been following your blog since 2009, I was diagnosed in '08, two autologous and Oct. 2011 allogenic transplant, since then I am doing pretty well but since a few months oligoclonal proteins are showing up in blood and urine.
    I feel like you! I want(ed) to get rid of this sh.. and this is why I did the allo...apparently it does not work out as we wish. Doctors seem pretty happy about results. I am not. They say it might have to do with Immune reconstitution of the new Immune system, but I am not happy. It clearly depends both of the sensitivity of the diagnostic methods and experience of doctors. We wil see. MRT and PT-CET are negative and recalcification is slowly taking place.
    Let's hope for the best

    1. Based on what I know, amaser, oligoclonal proteins are a sign of marrow recovery and a good thing. My report, in contrast, said there was a monoclonal protein signature. It was faint, and the doctors said not to be concerned...but it's still disconcerting! :)

      Good luck with your therapy. Where were you treated?

  4. I just found your blog via a "share" on fb by UAMS. I haven't read but just a few posts but just felt the need to say something.....not sure what.....just something.
    My Mom was diagnosed with Multiple Myeloma in 1999 at the age of 67. She was initially given 18 months to live. Living in middle TN, she at first was going to Vanderbilt in Nashville and then found out about Little Rock. She would go nowhere but the best, so that began her/our affiliation with UAMS. She underwent piggyback stem cell transplants which put her in remission!!! I believe (not sure) that at the time, she was one of the oldest to undergo those transplants. She was able to do her weekly treatments at the hospital in our city but made the trip to Little Rock every 6 months......for 12 years!! We lost her 2 years ago this month at the age of 79. She was a fighter, actually quite stubborn. That, along with the wonderful doctors and staff at UAMS and our local Cancer Center, gave my mom many more years than originally diagnosed. They were quality years too, that's the most important thing.
    I'm not so familiar with all the technical/medical terms that you've talked about. It's a tough disease. A form of cancer that most people don't "get".
    Hoping and praying that all goes well with you and your treatment.

  5. Nick, I am Italian, but had my allo in Wuerzburg, Germany, I met Dr. Barlogie at a conference last year, very impressive personality!