Tuesday, April 20, 2010

Unsettling lab results, and GD exposed as a control-the-disease sheep in wolf's clothing!!


Went to get my Velcade today, and to see GD for my once-a-month visit.

Very unsatisfying.

I asked to get my lab results.  He said "everything looks fine" regarding the APRIL FREAKIN' FIFTH labs, which are now two weeks old.  Except everything is NOT fine.  There is a "faint lamba light chain" present under immunofixation.

Now, this doesn't mean anything, necessarily.  I'm most likely still in remission (though I had to check in with BJ in Arkansas to get this information, rather than Dr. Numbnutz).  He evidently didn't think it was worthwhile mentioning this to me.  Which brings me to my first item in a list of how things are going to change.  I am getting my damn labs every freaking week if I have to turn that damn place upside down.  Otherwise I am going elsewhere.  This is total BS.

Anyhow, after I pried this information out of him, I asked him if it was an indication that I had lost remission.  He said it wasn't an indication of there being a monoclonal band, necessarily.  An immunoglobulin has two long pieces, called heavy chains, and two small pieces, called light chains.  One of these is a lambda light chain, and another is a kappa light chain.

There is a lamba light chain under immunofixation in my April 5th lab.

I wound up talking with Dr. GD for about 20 minutes, during which he said that he thinks people should try to control the disease, that he doesn't doubt that BB is curing people but that it's not that big a deal to have residual disease because a lot of people have it, and even if people live 20 years in remission is doesn't mean they are cured, blah blah blah.

In the words of The Bard:  "this guy can go piss off!"*

All this time, I've been getting maintenance therapy (he believes it helps control the disease, but of course hadn't read the article in the Myeloma Beacon and doesn't know what a PCR test is) from some doddering bunghole who isn't with the program, doesn't feel the need to inform me when I've potentially lost remission, etc.

I contacted BJ, who told me that it could be part of an oligoclonal chain that was picked up and that she is highly doubtful that I have lost remission.  Unfortunately, it says "monoclonal chain" right on the damn labs that this stupid buttpipe didn't see fit to tell me about for 15 freaking days.


The reality is, I have probably not lost remission -- but 100% of the time that somebody loses remission, this is how it starts.  So once again, my nerves are shot.

On the plus side, light chains in both urine and blood are normal, beta-2 microglobulin is normal, IgG is low, protein is normal, there no monoclonal protein under SPEP...plus I am on velcade, revlimid and dex in strong enough doses to kill whatever's left...plus I know I've got to stick with the program for another 30 months or so before I've killed the last of it off.  So none of this should be alarming...although for somebody accustomed to not even thinking about the disease, it is jarring.

It also highlights some of my issues with Dr. GD, I suppose.


*Note:  This is not actually Shakespeare, thus making my comment a brilliant (and perhaps even sardonically irreverent, as Dr. Pearl might say?) joke.