Wednesday, January 13, 2010

More phantom aches...

It's thankfully fading as I type this, but I awoke this morning with a dull pain (very minor, but I am attuned to these things) in my back. The ache is still there if I really focus on it -- it's about two inches to the left of my spine. I recall there being pains there during therapy, though I don't recall if it was the lesion or the vertebropasty that caused it.

Based on my conversation with GD yesterday, it seems unlikely that this is a recurrence. I remain immunofixation negative (although another test was done yesterday). And as GD points out, with recurrence, the pain generally worsens rather than goes away.

I am hopeful this can be dismissed with an MRI. I would prefer not to need to do another PET and God knows I don't want BB digging around with a Fine Needle Aspiration of these spots, which is probably where he will go with it. But if that's what is required, then I will submit to it.

More on this and other things of note as they develop.


  1. Nick, have you been getting the Free Lite test? I can't imagine that you would not be getting this test since you seem to get about every test there is for myeloma. The Free Lite test is more sensitive than the serum immunofixation.

  2. Nick:

    I'm praying that your visit to LR produces good reports all the way around. I commend you for getting back to work so quickly, gonna try the same thing myself. You are an uber smart guy and you live life BIG. Don't over-do-it. I've had a couple of those back pains that give me pause, too. Kinda hard not to fixate on them a bit. I'll be at MIRT on Feb. 3-5. I'm gonna to sandwich in a kyphoplasty (or two!)in between Day 1 tests and the Day 3 BB appt.

    My infusion appt. was today (#10) and parts of the CBC were manually counted this time. My platelets were @ 24. I thought about it and asked the lab to do an automated platelet count and it came back @ 120. Sheesh! All in all, things are going well - just have to keep on top of things. Celgene reps came in and discussed Revlimid with the oncology staff - I'm their first patient using it. I appreciated both sides showing an interest. Except for the MD Onc, the staff knows that I receive great treatment at UAMS and they want to follow suit.

    A nice lady from my church passed away recently from MM. Hit me pretty hard. She and her family didn't deserve it. We have to kill this ^%$@&# disease.

    Travel safely,


  3. Jerry -

    Yes, I get free lites. They have been normalized since long before my M-spike went to zero, so in my case they are not more sensitive than even SPEP, much less immunofixation.

    This is a test I have never much looked at since they haven't been outside the normal band other than a brief rise after the first course of chemo, which BB noted was normal in light of tumor breakdown. They settled down and have remained there since.

    So given that I don't know that much, you might be able to decipher my most recent test that I have in my possession (11/19) as follows:

    Kappa 6.76 (ref range 3.3-19.4)
    Lambda 5.53 L (ref range 5.71 - 26.30)
    K/L Ratio 1.2 (ref range 0.26 - 1.5)

    As I understand it the ratio is the most important, and one gets into trouble when it is too low (I have/had IgG Lambda Myeloma).

    I overhead GD dictating from my more recent labs (12/22, they pulled more this past visit) and he said that the Kappa was in the sixes. Didn't catch the Lambda but I'm sure it was fine because he didn't say that there was anything remarkable about it.

    I expect the Lambda is low because my IgG is being kept in the 575 range on Velcade and Revlimid. When that rises, post therapy, to 800 or so, the Lambdas will come up a bit and all will be well in pee-pee land. :)

    Sean, scary about that differential in the differentials! :) Amazing that you are the first person there on Revlimid! it's pretty easy to tolerate, although my platelets (as you have seen) aren't very high.

    I fully agree with your last paragraph -- we went through what we did to kill it dead. If you've seen the latest numbers, it looks like we might not even need to wait the six years to breathe easy...the new curve looks like it flattens after three!

    Be well, my friend!


  4. Also, Sean, meant to ask -- did you have a vertebroplasty during therapy, or are you still waiting for one? I ask because I had one during therapy, but still came out with a lost inch that I'd just as soon reclaim...

  5. Nick,
    Thanks for posting your Free Lite numbers. I guess I was wrong about the sensitivity. I thought since the normal free light number was a small quantity it might still be above normal after the m-spike went to zero. I was looking at this person’s numbers, , and thought there might be a correlation between free light and the m-spike at the bottom. But this person didn’t have a low m-spike.
    With the maintenance program you are on I wouldn’t think your pain could be due to a recurrence.

  6. Hi, Nick:

    Sorry it's taken so long to get back with you. It's seventh grade girl's basketball tournament time - and something or other kept me away from sixth grade girl's basketball last year,if you know what I mean. ;) Not going to miss a dribble this year, the Good Lord willing.

    I had my first vertebrolplasty in August 09. My T4 had collapsed and Dr. Erdem hammered it back into place (too messed up for a balloon), injected the miracle epoxy and my pain, at that site, darn near went completely away. In UAMS style, I was awake for the whole thing. On February 4th he'll tackle a few more (I have lots of compressions) and hopefully this pain level 8 - even with MS Contin and Oxycodone - will let me feel more back to normal. What an amazing operation!

    I've lost about 3.5 inches, down to 5'6" from almost 5'10". I might have gotten a bit back, not sure. Still looking through the steering wheel when I drive! I hear you, I want it back! Pardon the pun. All in all, things are good. Glad to be on the right side of the grass, as they say.

    Cheers! Sean