Friday, January 16, 2009

Two doctor consults, BB's overzealous assistant explains herself, and Hannah Montana

I spoke yesterday with Dr. BC, who treated my friend RH's father DH for myeloma and gave him an allogeneic transplant six or seven years ago. I had wanted to have this conversation for some time, mostly to find out why he went for the allogeneic option instead of the safer autologous option.

I had mentioned in a previous entry that DH approached his myeloma differently than I. I have been researching aggressively, looking at all my options, learning everything I can about the disease, etc. DH basically said "I trust my doctors" and left it up to them and didn't really ask any questions. For example, he didn't know the treatment related mortality associated with allogeneic transplants, even though he had one performed on him. I appreciate that he was very "zen" about things and didn't stress about it, but it's a very different approach.

So it turns out DH, consistent with this approach, didn't even know what he had. He didn't have myeloma, but rather something called a myelodysplastic syndrome which is a precursor to leukemia and for which autologous transplants don't work. Hence the allogeneic transplant.

With that question now resolved, I went into my "eight minute consult" routine, which consists of asking if I'm crazy to pursue BB's protocol, what people were concerned with about it, the chance of long-term acute leukemia from the cytoxan and etoposide (the C and E of VTD-PACE that is the induction protocol for BB), and the chance of what I've taken to calling "mangling the marrow" from the whole BB protocol such that in the future, I might not qualify for new novel agents.

Dr. DC, who knows Dr. SF and Dr.KA, is a "single transplant guy" who falls into the mainline of Vel / Rev / Dex plus one autologous transplant. His problem with BB's protocol is that the data hasn't been replicated elsewhere, and he might be choosing people that benefit from his protocol (not the first time I've heard this allegation). I told him, as I have written here, that frankly I can understand the clinical validity of that concern but as an individual, so long as he chooses me to prove his protocol works, I don't care one bit about selection bias. DC agreed with this logic.

He thought the acute leukemia and marrow mangling were things "he would be concerned about" but that no real data exists and just like one would want a comparison of BB's protocol against other protocols on same patient group to eliminate selection bias, one would want comparison of secondary marrow problems on or off BB's protocol, but no such data exists. I will have 1-2 more brief consults (BD next week, and SJ if I can get him before Feb 23 since that is now too late) plus BB's visit to try to bottom these things out.

I also spoke yesterday with a holistic medicine person suggested by PinnacleCare. There's a fine line between legitimate complementary therapy (what kind of food should I be eating to help me get through chemotherapy, etc., are there any normal supplements that work like more Vitamin D, etc.) and "weirdology" like I experienced with that flaky Canadian outfit. This person was an actual doctor, unlike the Canadian folks. At any rate, I got as far as mentioning lipitor and getting the "it causes cancer, stop taking it, don't believe me look it up" before I tuned the guy out. I may talk with one more of them.

In the meantime, I'm going to experiment for a couple of weeks with a product called liv.52 that my friend Geoff recommended -- it's an herbal formula that has a bunch of stuff that helps the liver. I'll also be taking milk thistle extract, which is the same type of deal (and is actually in clinical trials to compare liver response to chemo on this vs. placebo). I'm gonna do this for a couple of weeks, and then I'll have blood drawn at BB's shop. We'll see what the liver numbers do. I'm not going to continue this stuff once I begin real treatment, but if it brings down the liver enzymes a bit, then great.

I had Elizabeth from PinnacleCare call BB's assistant to find out what she was thinking when she sent that alarmist email. Long story short, there is a question about the Chromosome 1 abnormality that might not be the greatest, but the real problem is that she somehow missed the fact that I've been to two other doctors since the first labs she saw. My calcium hasn't budged from the first test, I have been monitoring the progress of the disease, etc. For some reason, she thought I was being lackadaisical about it and she wanted to create urgency. Unfortunately, the words High Risk when used in connection with BB's protocol have a very specific meaning which is terrifying to consider. She should have chosen her words more carefully. Not crazy about her, I gotta say. But I did like BB, both because of what he said and the fact that he called me at close to midnight his time, which was pretty remarkable for a doctor I've never even met yet. His assistant did explain that BB would take me on personally as a patient, which is great.

Lastly, what does Hannah Montana have to do with all this? Well I've been telling some of the folks with whom I work, so they won't wonder why I'm out of the office for the next nine months. I spoke the President of the Disney Channel, and his creative partner there has been fighting cancer of a different type. This executive, who more or less created High School Musical, Hannah Montana, the Jonas Brothers, etc. called me and we spoke and compared notes for about 45 minutes. Turns out his father-in-law used to be a very senior guy at the City of Hope, and Dr. SF has helped this guy out a lot even though SF doesn't work on the type of cancer that this guy has. So another vote of confidence from somebody who has known SF for a long time.

I feel very good about the doctors that are caring for me.