Monday, May 23, 2011

The actual meeting with BB...

So as happens on these visits, my last scheduled appointment was with BB.  I got to the clinic, met first with a research nurse who made sure all my medication records were being kept accurately, reported my minimal side effects, etc.  I snuck a peek at my labs, reviewing my MRI and bloodwork and bone marrow (all good).  I then met with the terrific physician's assistant JA to go over all of this before being summoned to the 4th floor and my consult with BB.

While there, I met a lovely couple who were monitoring the husband's MGUS.  They had not yet begun any kind of treatment and had a few questions which I was happy to answer -- and I referred them to this little page so if you Longhorns are reading, hello!  : )

Then I went into BB's office.  When I get access to the photo I took, I'll post it here, which will further strip away anonymity for anyone who cares to look so it's almost ridiculous at this point to keep initializing him since anybody who is remotely interested (and if you aren't, not sure why you are reading!) could find out that it's Bart Barlogie so there it is: like the day when KISS decided to take off their makeup, I've revealed the name of my doctor.

Anyhow, I'll post the photo here when I have a moment.

Now, you've read some descriptions about BB here, and for those of you that I know, you've probably listened to me tell many stories about him -- always being kind not to tell me that I'm boring you!  But I can't imagine this man is only of interest to me!  My usual description of him is:  "a 70-year-old German guy who rides a Ducati to the office and does his rounds in black leather biker pants and a dog collar."  Sadly, he was wearing a different outfit on this particular day!  Nonetheless, he is quite a character as my previous stories attest and as this one continues to affirm!

I entered his office.  He looked at me, smiled, and say "hey there, a**hole!!!" and stood up and gave me a big hug and kiss.  I couldn't help but tear up and frankly I am doing so as I type this.  Some doctors are known for being detached -- two well-known doctors in this field are known for being rather cold, actually.  BB, on the other hand, is emotionally invested in his patients.  He and I are friends.  I have mentioned before that I can see he is visibly effected -- saddened and tangibly angry at the disease and his inability to cure the most severe cases -- any time he loses a patient.  The flipside is real joy and a lightness of being when he is able to put somebody on the path to a cure.  Hence: "hey there, a**hole!!!" and the accompanying affection.

After introducing me to a colleague on rotation in from Greece (both a physician and the uncredited photographer behind the photo I shall post) he jumped into the file.  The highlights:

* Bone marrow negative for plasma cell myeloma, with normal morphology.  That means the right number of chromosomes, all in a nice little row.

* No trace of original M protein under immunofixation or SPEP.

* ALL BUT FOUR of the fourteen lesions in my bones have fully resolved.  I had, upon diagnosis, two in my hip, one in a rib, one in the left scapula / shoulder, and TEN in different vertebrae.  As of January, only two (shoulder and rib) had fully resolved.  But now, all but four of them are completely resolved and the remaining four (two in my thoracic vertebrae, two in my cervical vertebrae) are small enough where their size is not noted (which means they are less than half a centimeter).  Bart pointed out that UAMS is the only Myeloma center that tracks resolution of former lesions because their data suggests that recurrence can be linked in part to remaining focal lesions, even if inactive for cancer.  So this is tremendous and important progress.  My Zometa infusions were reduced from monthly to bi-monthly.  We will see if he continues it once the bones are fully healed (as it does look like I will get there) as Zometa's anti-Myeloma properties may or may not extend beyond promoting bone healing.

* My Dex was reduced from 12mg weekly to 8mg weekly.  This is the lowest amount that the protocol allows.  I welcome the reduction and hopefully it will reduce the digestive issues that I get mid-week.

* I am to return in four months, and we'll see how it looks at that time but thereafter it seems likely that visits will be reduced to every six months.  Which makes those Whole Hog sandwiches even more of a rare treat!

So there, friends, is the full update.

More news as is merited.


  1. Wonderful report and great you have such a committed team toward garnering good health for you!!

  2. Fantastic Report...

    Glad that your doing so well and you, hopefully, can see the light at the end of the tunnel. Keep us informed and thanks for helping the MGUS guy... Sometimes us MGUS & Smoldering MM patients get brushed under the table!

  3. We're absolutely tickled for you, Nick! Way to go, honey!

  4. So happy for you Nicholas Nickleby!