Wednesday, April 21, 2010

Helpful commentary from BJ

I fax the labs -- that my local doctor here has had for two weeks without telling me about them -- and an hour later I get a thoughtful response from BJ that cross-references the last blood I sent to Arkansas. And this response, while recognizing the limitations of a non-doctor response, is about 100X more helpful than what I got yesterday.

Patients: no matter where you choose to be treated, and no matter what philosophy (control, cure, curcumin) you embrace, demand that doctors treat you as someone who understands their disease, and who is entitled to know the results of every test on a timely basis.  It's your body!

Anyhow, here's the news from Arkansas, which is both a bummer (I have not been consistently immunofixation negative) and somewhat reassuring (this is probably the sign of recovering marrow rather than myeloma):

This is the language found on almost all your reports, fairly consistently, describing your [immunofixation results]:

Immunofix. Serum on March 8, 2010. The original IgG lambda M-protein may be present.  An indistinct band is present in the position of the original M-protein.  Plus additional indistinct IgG lambda and IgG kappa bands.

The biggest difference is that the original monoclonal band was with a heavy chain (IgG) and a lite chain (lambda) and [the report you faxed] shows a faint monoclonal free lambda light chain without a heavy chain which is not your original clone.

My pea brain is not equipped to analyze what that means, but it probably means nothing. Every once and a while you have what are called oligoclonal faint bands which is seen in recovering marrow.  Good conversation to have with [BB].  Right now I would say poof, nuttin!  Maintenance is usually for 3 years because that is the population that seems to have the ‘cure’ signature. Again a very notable conversation for [BB].

A few things to highlight: responsiveness to a patient they haven't seen in person in three months, enough data for me to make my own conclusions, and an admission of where the knowledge is incomplete. Were I interested, I could get BB on the phone to bottom this out today, but I will see him in a month so there's no real urgency to it.  Also, I'm sure they would have contacted me on March 9th had they not seen this before and discussed the same issue (oligoclonal bands as a good sign) with me once before.

Again: regardless of your philosophy on this disease or your physician's philosophy, demand to be treated like an adult and get whatever information you want. I understand many people don't have the desire to dive into the information the way I do, so your mileage may vary. But beware the doctor that puts data into a black box and refuses to share it. I spoke with the wife of one patient my age recently and her experience with her husband's doctors has been AWFUL -- as in they don't know the result of bone marrow analyses done WEEKS ago.

Don't stand for it!


  1. Thank you, Nick - GREAT post! It explains some things about 'indistinct bands' that I was wondering about. When I first saw those terms in my own reports, I got a bit nervous. I'll take a breath and keep charging ahead. Wow, BJ is a fantastic resource! As I've said before, you ROCK! Sean

    BTW - I'll be in LR 5/5-7/10.

  2. Hi Nick. Just want to let you know that those terms are in Bruce's reports too. Keep up the great post and wishing you well.


  3. I'm waiting results of latest bone marrow biopsy and all drugged up after procedure had short conversation with doc making sure he would have previous results for comparison and discussion. He knows he gets a lot of questions and discussion from me. I would have moved on if he couldn't handle it! I don't claim to know it all, but I am certainly working on learning about it as we go along!

  4. Nick, I found this post to be informative.. does your doctor measure C-reactive protein values as well?