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.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.
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.
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.