September 8, 2011

Reality begins to set in. Consultation today with Ali ben Jacob (AbJ) my onc doc in re my bone marrow stick.

Actually, I have had a fabulous several days. My hard practicing regime this summer appears to be paying off. I am getting through the show, and last night, we did one dance set, in addition. The damn show is about 95 minutes. That's a lot of blowing. But my chops appear to be holding, and there is that nightly thrill when the audience goes crazy after we nail Sing, Sing, Sing. Of course, I am juiced when I get home, so going to bed relatively early is problematic. Last night it was midnight. Tonight, which will contain the show and two sets of dancing, sets the scene for the rest of the week. Apparently the show is sold out through Saturday evening. So: still a-symptomatic and life quality is good. However, that is likely to change, and fairly soon.


To review: we are dealing with Mantle Cell Lymphoma (MCL) a rare, non-Hodgkins type lymphoma (NHL), which has in its sneaky little way invaded my intestine and my bone marrow, just slightly in the latter case. "Just slightly" means that of the cells sampled in my bone marrow, less than 5% are Mantle cells. "Just slightly" so happens to qualify me as a Stage IV--the highest (worst)--cancer patient. Not good. This means chemotherapy soon.


Before that, a couple other events have to happen. First, I must undergo an electro-cardiogram (ECG) to determine heart function. Ali ben Jacob has in mind a treatment, one side effect of which is cardio-toxic. So, they'd like one to be heart healthy to tolerate said treatment. Said treatment can cause cardiomyopathy, from which, I believe, my youngest brother may have expired, but then he was obese (300+ lbs), a non-exerciser, and a perennial dope smoker. Second, I must have a port placed in my upper chest so that they can more effectively drip the poisons into my bod. The former happens tomorrow, the latter--a preliminary consultation--is next week, but they will not place the port until I return from catching a lot of striped bass at Lake Powell next week.  So probable port placement last week of Sept and probable treatment start the first of Oct.

Now, as to treatment. AbJ is going to follow a set of protocols that seem promising, published by a clinical trials group at Cornell (Ruan et al. J Clin Oncol., 2011, 29(6), 690). To reiterate: MCL has been identified perhaps as recently as 10-15 years ago. It is a 6% fraction of all NHLs. AbJ says only a few hundred cases are identified each year, nationally. (Jan says she knew from the beginning how rare I was.)  Therefore, there are no agreed upon protocols. In fact, the field is split on treatment: very aggressive (kill the immune system totally-without, if possible, killing the patient--and replace stem cells to start over). One of AbJ's diagnosed patients apparently opted for this at Huntsman Cancer Center which is where he went for a second opinion and eventual treatment. Outcome is unknown in this case. Or, treat more as indolent. The Cornell group has opted for a more middle road. Treat as indolent but add a kicker. So I am going to get something called R-CHOP with the kicker being something called Bortezomib (Valcade). (More on all of this for those who care (me!) later as I try to digest what I've learned so far.)


I will get six 21-day cycles: R-CHOP with Valcade on Day 1; Valcade on Day 4; and 17 days to get better until repeating this. There goes the fall and part of the winter. I ask how sick will I be. He says, you will lose your hair. I say it's mostly all gone anyway. Other than that, they will make me feel bad, but perhaps not nauseous (there are pills for that). The really bad side effects we'll save for later.


A couple other answers to questions I asked:
1. I am a-symptomatic now; untreated, how long until symptoms? Ans: 3 months (Symptoms are night sweats, fever, and weight loss.) Better to wait until symptoms appear? No!
2. What course? Well, it is a disease of remission and relapse, repeated remission and relapse. 
3. Average time from remission to relapse? No data. Probably depends on the individual and the initial presentation.


Enough for now: I have a bunch to read up on: the poisons; the treatment; what the fish at Lake Powell want; how much gin to take, etc.