Thursday, January 15, 2009

Thoughts on last night's scare, and a nice call with SF

I like BB.  It was great that he called, and he did put me at ease.
I also received a call from SF, whom I had told about the dire email I received from BB's clinician.  He was concerned, as I am, about the tone of the email which was quite alarmist.    Here's what it said.
Elizabeth, by way of introduction, I am Dr. BB’s assistant for almost 20 years and work with him clinically and in research. He has asked me to contact you so we can answer your questions and let you and Mr. Van Dyk know what to expect and why.

I have read with interest the scenario that has been outlined for you and ask that you call me as soon as you can.  Mr. Van Dyk has a high risk gene array based on the changes noted in chromosome 1. As noted in the dictation from City of Hope, he does not have deletion 13, an abnormality that we have not used for more than 2 years to make treatment decisions. In large multivariate analysis, it didn’t hold up as a risk factor. Mr. Van Dyk needs treatment very soon. He cannot wait two weeks.

I am very, very concerned, as is Dr. BB, that he has a marrow with 80% plasma cells noted 6 weeks ago. The protein levels could mean the beginning of a loss of kidney function and other very serious problems if not treated. His calcium marker is almost 10.
Translation: blah blah blah chromosome 1 blah blah blah high risk blah blah blah old genetic markers that say he is low risk are ones we don't use blah blah blah can't wait two weeks blah blah blah kidney failure blah blah blah calcium almost 10 blah blah blah grim reaper holding for you on line 2, Mr. van Dyk.

Pretty scary stuff, and if you look at BB's presentation and how he draws the distinction between the effectiveness of his protocol on low risk vs. high risk gene array patients, it's very dire.  Dismal, to use his words.  So dismal as to suggest there's no point in pursuing that therapy since it will be a dead end and I'm better off doing a single transplant with fewer drugs since that will take less time, be less toxic, and both that and the more toxic route would both leave me with no hope of cure and a 3-4 year lifespan absent developments of new drugs.

When BB called, he did say that chromosome 1 marker is troublesome, but not definitive, and that we needed a gene array analysis done.  He thought it would be fine to wait until my already scheduled appointment.  I am quite sure that he will want to treat me immediately, but that's a far cry from "Death's icy hand is two inches from your shoulder, run run run!!!!!"

I am a little perturbed by the tone of the email.  Also, while it is true that my calcium is almost 10, other doctors have seen this and repeatedly stated that my calcium is normal.   "GOOD GOD, YOUR BLOOD PRESSURE IS 124 OVER 82!!!!!!!"

Anyhow, SF called (I had forwarded the email to him) and basically said he was a bit "perturbed" (he used more direct language) about the tone of the email.  I told him that it was one thing if BB's folks had more data than anybody else, and could run more detailed statistical analyses, and on the basis of that were able to glean more from a chromosome 1 abnormality than SF or others, but the calcium marker is something that SF, KA, SH, and even gloomy-ass ML should be able to review just fine.

SF had a couple of very insightful things:

1.  The gene array analysis is a useful thing, however while there may be a lot of data at BB's shop, we need to consider that a lot of that data could be without the benefit of velcade, etc. and they really need to get my blood sample and run it against people that are very similar and who were on the treatment program I'm likely to pursue.  Looking at the one chromosome situation in isolation can't be definitive.

2.  The calcium marker didn't look alarmist to him.  "What do these people know that I don't know, or KA doesn't know?"  He jokingly said "What kinda operation are these people running down there."   :)   He's friends with BB for nearly 30 years now, and I know he respects him.  So this was directed against an overzealous assistant, more than BB (who himself told me to relax and let's see what the gene array tells us).

3.  I explained KA's concern about mangling marrow and making it difficult to use novel drugs in the future since I won't have regular blood counts.  He (SF) said he wouldn't be concerned as "we've gotten very good at managing these meds and that shouldn't be a factor."  He also said he wasn't terribly concerned about the long-term acute leukemia possibility.

So, the net-net: I have chromosome 1 abnormalities and I cannot rest easy knowing I'm in the low-risk group for BB's protocol, which is a bummer.  But let's not start taking measurements for the casket just yet.

That was four hours of terror last night, but at the end of it, I slept well.  In the words of the flustered CIA bureaucrat at the end of Burn After Reading (a funny movie, by the way):  "What did we learn here?  Damned if I know.  I guess we learned never to do it again."

More news as it develops.


  1. You probably know a few lawyers. Have one draft a Cease and Desist to The Reaper!

  2. Nick,
    We've had many scary things told to us, most or all of
    which wound up being untrue and assistants and
    techs, however "well-meaning" really need to censor themselves a bit. We had one of the most dire warnings told to us by an assistant
    and she was in no position to make such a statement. The good news about docs having different opinions and treatment protocols is
    that the reason behind it is the sheer amount of major progress being made very quickly in MM research and treatment. It's frustrating to weed through it all and make decisions but it
    is much better than when they only had dex and no hope for long term outcomes. Hang in there.