Wednesday, October 14, 2009

I'm still nervous

When I was told last night, on my cell phone with a bad connection, that I had nothing to worry about, I was so relieved that I didn't really focus enough to ask some follow-up questions. So I've emailed them to BJ. Here they are...and I'm not so sure that I have nothing to worry about.

I've been reading up on immunofixation. Briefly, as elaborated upon here before, it is a much more sensitive way of testing blood for monoclonal protein than protein electrophoresis, and can find much small amounts as a result. Once my SPEP came back low enough to justify it, they began doing immunofixation tests on me. I have had five to-date.

The first two were in late July in Little Rock, where a distinct monoclonal band was observed under immunofixation. Not surprising, as my M-Spike was around .3 or .4. This was the point at which my original hematologist in Beverly Hills said I had a "meaningless level of the disease" but I wasn't satisfied with that -- recall the difference in outcome from achieving CR versus not achieving it.

The next test was done in Los Angeles in early September. At this time, I was immunofixation negative. No monoclonal protein was detected.

The next test was done in Little Rock in mid September. At this time, the test said something like "monoclonal protein in not detected but cannot be excluded; multiple poly clonal kappa bands are also present." BB was very happy with this, pronouncing it a sign of "very profound complete remission status."

Then came the test from last week, which said that a faint monoclonal band was detected under immunofixation.

I've read up a bit on the specific terminology, and I'll let this report speak for itself. It's from the book "Proteasome Inhibitors in Cancer Therapy" -- sounds like real light reading, doesn't it? :) Regarding a patient undergoing initial trials for the proteasome inhibitor Velcade (bortezomib) the author writes:
This patient had initially responded to vincristine-doxorubicin (Adriamycin)-dexamethasone (VAD) but subsequently relapsed and was refractory to VAD and topotecan-dexamethasone. She had a confirmed complete response after three cycles of bortezomib and went on to complete four cycles of therapy. Although evidence of recurrence (faint monoclonal band in immunofixation) occured 6 months later, she requried no antimyeloma therapy for a year.

This is very disconcerting, obviously.

So my question (in multiple parts) is as follows:
Is this new data or is it likely that I had the faint band when tested before? The previous test here at the same lab said it was immunofixation negative. So it does seem like a change, even if there are oligoclonal bands surrounding the monoclonal band. Or is it that I had probably not reached true immunofixation negative status before and the test here was a "false negative"? And if that is the case, am I technically in complete remission? And lastly, should we continue to look for elimination of the monoclonal band entirely as a sign of further progress?

BJ's response, in real time as I wrote this blog entry, is reassuring yet not quite as detailed and direct as would optimally be the case. So I will have to have a follow-up conversation, probably first with Dr. GD as I'll see him on Tuesday and it is his lab (or the one that he outsources to) that had the two tests done. Also, we do need to keep in mind that the report from yesterday wasn't exactly fulsome. It said only: "A faint IGG (lambda) monoclonal immunoglobulin is detected."

Anyhow, her response:
This is realllllly not important in the scheme. A faint band may be a part of the response to treatment. Do not dwell on this as you will go crazy as it is totally unfound one month and faint the next. It has no bearing on your overall well being, does not, ever, signal relapse. Not never no how!!!!!!!

Hmm...well, I do think that if it is never found again, that's probably the best indication of my overall well being. But I remind myself I am on three years (well, two years, eleven and a half months now) of very powerful medicine. What I am on now, with effectively no disease (can't quite say it without that qualifier any longer), is what most doctors prescribe to people with raging myeloma. So I'm sure the overkill approach, which has gotten me this far, will continue to work. I recall Dr. KA's presentation at the last MMRF conference where he (being a Red Sox fan) noted that protein goes to zero quickly but it's very difficult to get the last Yankee out of the system. I've got at least one straggler in there...let's hope it's not Derek Jeter


  1. Hi Nick,

    I totally understand your response to this result, but I guess I'd ask you this question: What are you going to do about it?

    The answer appears to be "worry." :-)

    Based on what BJ said, I'd follow up with the doctors (BB or GD, as appropriate), and accept what they tell you. Quite honestly, it sounds like you've done everything medically possible to combat this disease by undergoing BB's "overkill" approach, and there's nothing more that can be done at this point.

    Although the "carpet bombing" initial phase of treatment is done, you DO still have virtually the entire course of what others prescribe for "raging myeloma" left to do. While that previous "negative" test result was *highly* encouraging, you're nowhere near finished with your assault. I wouldn't despair over one test result so early in this phase of treatment.

    Obviously, keep your eyes open as you've been doing, but stop stressing yourself out. I'm no oncologist, but I'm honestly not surprised at this "blip on the radar" or your reaction to it. As BJ said, "Do not dwell on this as you will go crazy." :-)

    As you've said before, a positive attitude is a big part of making progress on recovery, so keep your chin up. You WILL beat this, and you're well on your way. You ARE in remission, and you WILL reach "cured" status. Get back to living your life. :-)

    Glad you had a nice evening last night...and that you had a driver. :-)


  2. Thanks, Craig! This commentary is spot-on and I greatly appreciate the encouragement and gentle course correction! :)

  3. Nick,
    Tim had a similar result in June. It did not list an m-spike but said there was a very faint band in the IGG Kappa region against a dense poly-clonal backround. I got different answers too on what this means. They shortened
    his follow-up time from 3 months to 2 and in August, his immunofixation was negative again.
    No monoclonal proteins detected.
    The PA referred to the last test as "noise."
    I have heard of other cases where this has happened too. People can bounce around at this level and I guess at times, the MM just peaks above the radar and goes back down. His doctor felt it was insignificant too in so far as like Craig mentions, it does not change what you're doing. And, it seems, he was right.

  4. Nick-
    Hello from cold and rainy/snowy Wisconsin! I picked a bad week for a return visit from Florida, but had speaking engagement today across the border in Minnesota. I have a question for you: Has anyone ever studied and tested non-myeloma patients in the same way? Bet, with this tight and exact testing, some of those perfectly normal folks would exhibit some banding or faint evedence of protien, don't you think? You might want to ask. But please don't worry, my new friend! You have done all humanly possible. At some point, our fate is to wait! Just don't forget to appreciate every day while you are waiting and watching! Feel good and keep smiling- Pat

  5. It's seems perfectly normal to me, given the intensity of the past months, for you to be super-focused on tests and data. And, perhaps this is a kind of signal to you that it is time to begin re-focusing on another part of living, intending as you do that, that all your cells are healthy and well. This may seem somewhat Polly-annish on the surface, but you seem to be getting similar messages from the professional medical folks as well as friends to put your marvelous intensity into another arena for the time being. Just an observation...