Wednesday, August 18, 2010

Quick update...and one mans' myalgia is another man's OUCH!

Hi folks.  Sorry to have vanished there for a bit.  Lack of news plus a brief break for an annual golf vacation took me away from my post for a bit!

I continue to be contacted by newly diagnosed patients who stumble across this blog and I have to say it is one of the most rewarding things -- if you are reading this and are diagnosed and want to talk about anything, please drop me a line!

So...recent labs are all good.  That's what we call "answer first" in my business.  :)   Now I can back up and say that I've noticed, when lying down on it, my lower right rib feels tender.  There is no constant pain -- it goes away unless I am applying pressure to it by lying down on that side.  I had Dr. GD take a look (which consisted of him pressing on my lower rib) and it didn't hurt.  He was fine with it.  Then again, he'd be fine if I had M-protein again.  He doesn't fully get it.  I resolved myself that I'd be getting MRI's in a few weeks anyway, as I return to Arkansas on September 7th.

Then the other day I noticed a pain in my right shoulder -- barely there...just kind of background noise during a round of golf.  It went away later that day and has not returned.

Jill is keeping a brave face, suggesting that this bone pain is part of the healing process and comparing it to when our kids had "growing pains."  A quick review of "growing pains" itself (thank you wikipedia) indicates that they are a misnomer and have nothing to do with bone growth (or any other kind of growth).  So...there goes that theory.

Lastly, after a series of very good labs, I had a borderline high LDH (an enzyme test that indicates tissue breakdown and is a tertiary marker for cancer, treatment impact, etc.).  I'm not overly concerned in isolation as it wasn't incredibly high (normal is 100-250 and it was 258...but two weeks before it was 140).  Anyhow, these things were all combining to make me a little nervous.

For my part, as I said, I'll be getting an MRI soon enough for the bones.  But the all-important immunofixation test, which I got back yesterday, is negative.  Complete remission remains.  Light chains totally normal as well.  The likelihood of there being no M-protein and there being a problem is pretty low, and I'll be getting a bone marrow as well (great) in a couple of weeks as well.

I'm sure I'm still in complete remission and these random little things are just random little things.  But I will be glad when the MRI reveals the lesions have all healed.  I don't think I am there yet.  BB says 1-2 years for resolution on MRI; I am at remission plus about 50 weeks so I've probably got six months to go.

I am half-afraid to mention any of this because knowing BB he will want fine needle aspirations of my rib and shoulder.  If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT.  :)

Speaking of pain, I had my first leg cramp in several weeks tonight.  Left calf, pretty nasty.  It struck at 4:30AM and I was afraid to lie back down for fear that it would happen again, so up I am.  I saw a note in my file yesterday (yes, I had to ask twice to see it since GD's office never calls to tell me anything and I wanted to see the immunofixation results) that I had "no complains other than mild myalgia."  Turns out myalgia is muscle pain, for those not in the medical profession.  And if what I just experienced is mild, then a cerebral hemorrhage is a mild headache...

Lastly, gastrointestinal issues remain.  I think the combined assault of VRD has left my GI tract in a state of disrray.  I don't want to take anything over the counter for fear of crippling constipation.  It's like a shower where the only two settings are too cold and too is afraid to make any adjustment.  Anyhow, soon I will get a two week break from the meds and that will hopefully ease some of this.

That's all the news that is fit to print, and probably a few sentences more.  :)

Be well, everybody.


  1. Your updates are always helpful and informative, thank you. And it is good to hear how well you doing post transplant.

  2. Hiya, Nick:

    Glad to see that your news, albeit with some nagging issues (easy for me to say!), is largely good. Sorry about the pain. I think that it is good, within reason, to be tuned in to those pains - not sure if that radar will go away from us for awhile.

    "He (GD)was fine with it. Then again, he'd be fine if I had M-protein again." "BB...will want fine needle aspirations of my rib and shoulder. If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT.:)" There you go making me laugh again! Thanks!

    I've had some small local pain issues, but after my recent trip to LR, my 'Answer First' is still CR, lesions are healing, no M protein in serum or urine. I think that if I tried to swing a club right now, there would be PAIN, for me, but mostly for those around me in harm's way. The GI roller coaster seems to be a way of life for me, as well. Just hope it doesn't show up on one of those 'Wildest Ride' shows on the Discovery Channel.

    Enjoy your vacation from Rev/Dex/Vel; yes it is good. The new diggs at UAMS are nice.

    Quick question: Our friend Pat K. has questioned the wisdom of multiple BMBs - they're focal, cause pain, we have SPEP and UPEP, etc. You've probably had 10-12 like me. Any opinion?

    BTW - I can't say enough superlatives about 'Snowfall on Judgment Day'. Although I am not well acquainted with Prog-Metal, I have to believe that it is a major cut-above in the genre. Amazing story through lyric, bold musical ideas and execution, all tremendous tracks. Bravo!

    Praying for GREAT news from Team van Dyk's trip to Clintonville, er... Barlogieville!

    Best, Sean

  3. Sean -

    Always great to hear from you, my friend!

    Our friend Pat has a different outlook on treatment. Conservative doctors and those who assume the disease will always come back after treatment don't care that much about constant testing -- let alone BMBs -- because there is no point in an "early warning system.". The disease will come back, and it will show up in tests when it does, and they will deal with it at that time.

    For us, the ongoing BMBs do serve BB's statistical and data efforts, but they also do provide another data point on the comprehensiveness of remission. For us, profound and sustained remission means a cure. So knowing that my plasma cells are, say, 3 percent of the marrow with no myeloma is very helpful.

    Bear in mind also that Myeoma can change -- particularly after it has been hammered with everything BB throws at it. It could come back in the marrow before it is seen in blood.

    Pat's approach is to do as little as required to treat and be very conservative. Another example is his use of Aredia versus the newer and more potent Zometa -- Aredia is not as effective but it's complications are marginally fewer than Zometa (I am told) so why risk the Zometa?

    Obviously we signed up for something a lot more aggressive in Arkansas!

    I do believe there are things that BB wants in followup which have value for his data but not clinic value to me as a patient -- gene arrays would be an example of this. I push back on those -- although as I owe BB my life it is hard to say no to him! :)

    Lastly, I want to make clear that while Pat and I have different philosophies on treatment, I have tremendous respect for the guy -- he devotes an amazing amount if time to getting the word out and helping to educate new patients.

    Okay...too long an answer as usual!



    PS. thank you so much for the kind words about the music! There is more to come...I had plenty of time to reflect on lyrical themes while in treatment! :)

  4. I'm hoping it's just that you're getting old like the rest of us :)

    Hang in there old friend.

  5. Hi Nick! Great Luck in LR with BB and the team! Your news will be all good! Unless you light up like a Christmas tree on PET you will not have any fine needle aspirations. You are in CR and it will be sustained!!! I hope you and Sean will be in LR in November (16,17, &18) when I return! I have been asked to join the new clinical study The Myeloma Cure Project. Means more bone marrow aspirations..yuk...I am almost to 30 now! and a few more trips to LR. How can I say no though? I owe Dr. B and the group my life! Good Luck....Will be thinking of you!