|Dr. George Papadopolous was the only one who approved of my "spray some Windex on the tumor" idea|
For what it's worth, both Al-Katib and Anderson are inclined to think that my current treatment regimen is fine. Dr. Al-Katib is probably more firm in that conclusion. Dr. Anderson is open to changing things, but only if there's a good reason to do so.
We (my parents and I) met with the doctors for about an hour each. That's a ton of time to spend with a doctor. But it was excellent to have that much time to figure things out, especially when I endured about six days of hell following the call from Dr. Li last Friday. Both doctors sat there and answered every question and discussed every issue. That means a lot at this point.
As I said, Dr. Al-Katib was probably more firm in his recommendation. He took issue with some specific language in the U-M pathology reports along with some of the terminology used by U-M doctors. He had done some significant research on the issue - he came into our meeting with books and journal articles. The gist of his argument was that there was no "right" way to treat my lymphoma - not even a "best" way - and that I didn't have Burkitt's or Burkitt's-like lymphoma according to anybody's pathology report. And he's right about that - the pathology reports all conclude that I have aggressive high-grade B-cell lymphoma. The things that spooked U-M were 1) the high proliferation index and 2) a type of genetic mutation called a c-MYC rearrangement. The c-MYC makes a cell "crazy," as Dr. Al-Katib described it. But there's no evidence that treating my type of lymphoma - which is literally deemed "unclassifiable" or B-cell lymphoma with features of Burkitt's - in any particular manner will produce better results.
Dr. Al-Katib's second main point was that the treatment is working. He actually pointed out something that I hadn't noticed previously: The PET Scan reports give a "SUV" number. SUV means "Standardized Uptake Value." This refers to the amount of radioactive glucose that is "taken up" by the active cancer cells, and, in essence, measures the activity level of the cancer. Anything above a 2.5 worries oncologists. My SUV in August: 33.5. My SUV in late September: 2.1. That's where the 95% reduction figure came from.
So that's the gist of the meeting with Dr. Al-Katib. He finished by saying that if his own son was in my position, he would treat him the way I am being treated right now. That's a pretty significant endorsement. At the very least, after the meeting, I was convinced that there is no "right" answer. If you're looking at Burkitt's-like lymphoma and a 30-50% relapse rate without CNS treatment, then the answer is clear - you do the treatment. But we're not looking at that situation. We're looking at an odd lymphoma with no clear treatment path, but the one we've chosen has worked extremely well.
Dr. Anderson made a lot of the same points, although he seemed slightly more open to amending my treatment protocol. Which I actually respected, because it means he's taking U-M's recommendation seriously. But he added a few points that are worth noting.
First, Dr. Anderson reiterated that the Henry Ford tumor board was ready to pull the trigger with the more intense form of chemotherapy until my tests came back and showed that the cancer was localized. He said he was actually encouraged by my original PET Scan, because aggressive, high-grade lymphomas like mine often aren't caught until later stages. They're still treatable at that stage, but the case for a more aggressive form of treatment increases with the stage of the disease.
Dr. Anderson said that the more aggressive treatment probably would have been even more effective. But, he said, it would have come at a cost. As he put it, there's not much of a reason to bump your chance of success from 95% to 98% if you increase toxicity and the chance of complications from 5% to 20%. Those are rough percentages, but the point is the same. In short, the Henry Ford tumor board did not consider the relative benefit to be worth the additional risks of a more aggressive treatment.
Dr. Anderson also made the point that the decision now is much different than the decision back in August. In August, we had a PET Scan and a pathology report. Now we have an entire clinical picture and a course of treatment to base the decision on. And, as Dr. Al-Katib noted, the treatment is working. Anderson had another analogy: If the Lions are playing the Patriots, you put your money on the Patriots. But if the Lions are up 24-0 in the fourth quarter, it's probably better to throw money on the Lions. Bad team to use for the analogy, but again, point taken. In short, it was a much closer call back in August. Now, we have to account for the results of treatment thus far, and the results have been very good.
So where do we go from here? First, I am going to continue to have all three doctors heavily involved in my treatment going forward - or at least until we make a decision - because I now understand completely the uncertain nature of my diagnosis and treatment. (For what it's worth, there is more uncertainty in lymphoma diagnosis and treatment, and more room for disagreement, than with virtually any other cancer).
Second, I want Dr. Al-Katib and Dr. Li to speak. I just want to make sure all the doctors understand what the issues are, why everybody is issuing a particular recommendation, and that everybody has considered all the relevant information. Unlike law - where people can look at the exact same set of facts and come to completely different conclusions - medicine is science-based, and you are working with some degree of certainty about particular facts. There is still room for frequent disagreement, of course. But there is at least a greater chance that doctors can reach a consensus about particular facts.
For my part, I'm going to finish my treatment - the last cycle of R-CHOP and then a period of radiation therapy. Radiation should begin about two weeks after my last cycle, but I'm not sure how long it will last at this point. I'll know more in a week or two.
And then, I'll either be done or I won't. I'll keep in contact with all my doctors, get Dr. Jaffe's take on the pathology, and possibly send my stuff out for another recommendation on treatment (Dr. Jaffe can provide advice on the diagnosis front, but not on treatment). But now I have a bit of time to do that.
This issue isn't resolved. I'm not sure it ever will be, since this whole thing is an ongoing process. But we're much further along than we were on Monday and I've effectively been talked off the ledge. If more aggressive treatment is the best way to go, so be it. But I want to fully understand the reasons for that before we go ahead with putting even more toxic stuff into my body. At least now, we have a plan going forward. That's good enough for me.