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!

A bit calmer some perspective!

Thanks for the words of support in response to yesterday's little bump in the road.

Having thought about it a bit, of course I wanted to never see any trace of anything wrong with me ever again, and I believe I'll get there, but I'm not there yet.  Pretty simple logic: if I had no myeloma cells left in my body, what would be the purpose of maintenance therapy?  BB knows this, hence the VRD that I'm on for at least another 28 months.   If, in fact, this was a busted up piece of a monoclonal protein that wandered into the bloodstream, it's evidence of the need to continue maintenance, and it will get obliterated by the cocktail that I'm on, along with whatever cell created it.  I will stick with the program, then!  Onward!

Now the failure of my doctor to get me my labs is another story.  My friend Sean, whom I met during transplants in Little Rock and whose unfailing good spirits and positivity are quite inspiring, noted that he goes to an infusion center that is not manned by a hematologist and they follow BB's orders to the letter.  They draw blood, call Arkansas to confirm the counts and get approval for the velcade infusion, send the blood to Arkansas for further analysis and administer the velcade.  That sounds like a good solution!  Perhaps I will seek one of those places out.

By the way, Sean maintains a blog here.