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.


  1. It is crazy that we know more than the Dr.'s do. I'm really new at this and I've already had to explain myeloma to a Doctor. I went in for something non-related but I felt it was important to let him know I had it. He asked "where in your body do you have the myeloma"? I explained "everywhere". He rolled his eyes and said "when it was diagnosed where did it start"? I stopped and knew he didn't have a clue and said to him "think leukemia"! He looked confused and left. I can't think of how difficult it would be to have to go to a Dr. every month and explain what you need. You think they would call somebody and get up to speed.

  2. Nick:

    You are MORE than justified in your anger. If I couldn't get every stinking piece of my lab information, I'd kick the guy (and/or his institution) to curb and find someone with a legitimate team mentality and desire to keep me informed. Difference of opinion is one thing, but the cost (monetarily and medically) is too great to suffer fools, even if they are highly esteemed MDs.

    I met with my local cancer center's oncologist and all I got was a condescending diatribe about how the MIRT plan was not a good decision. Guess what? I don't have a local onc - I'm flying solo, keeping in close touch with UAMS and watching my stuff like a hawk. Ideal? No, but I don't have a counter-productive middleman serving me poorly.

    Keep at it, Nick.

  3. Thanks, Sean!! How are you getting your Velcade without a local onc?

  4. Some "dock-tors" aren't really much more than laborers, barely able to manage shipping materials from port to port. A few rare ones have managed to be brilliant and some are even brilliant AND compassionate.
    Keep on demanding performance... it's your right and it is their OBLIGATION, if only because they are supposed to be providing a "service." It's too bad patient reviews cannot be published like whether or not Dr.-So-n-So is really a four star or not...

  5. Hi, Nick:

    I do have a local infusion center, but I don't have a local oncologist or hematologist. The cancer center follows BN's or BB's orders. We do the labs, call MIRT (as you know) and the local Onc/RNs hook me up after consulting with UAMS. My GP handles magnesium/phosphorus/ etc. needs, but all MM related stuff is ordered by Dr. Nair or BB. It beats having to hear from the local MD that I was 'brutalized' in LR. Sean

  6. Wouldn't it be great as per Sandy's thoughts to have a scheme whereby you could read patient reviews of doctors. After having just changed my blood doctor, not that I doubted his knowledge, but he wasn't exactly forthcoming with MY information, the new one comes recommended.

  7. Nick, are you getting the PCR test and if so what are the results. I wonder when you get your cold if your immune system could be creating a number of simular immunoglobulins that could show as a slight band with the immunofixation test?

  8. Nick, I feel your frustration. My local Onc. is the same way. I truly don't understand what the problem is. As others have said, it is MY information. I shouldn't have to fight to get it. Waiting weeks for results is unacceptable. We, as patients, should NOT have to track everything down, make sure orders are correct, or make all the phone calls, but unfortunately we do. It's sad and I, for one, am tired but I still have a lot of fight left in me. No doctor's office wants to mess with me on a Dex day.