Thursday, April 21, 2011

Mixed Blessings

Today is Maundy Thursday.  Maundy derives from the Latin word, mandatum, which means command.  I've  used another form of mandatum in my law practice when I've prepared a writ of mandamus to file with a court, requesting that it command the doing of an action. 

In Middle English maunde signified the ceremony of washing the feet of the poor, which also came from a part of the last supper. However, the more important connection to mandatum is found at John 13:34  in the New Testament, where during the last supper, Jesus gave the disciples a new commandment:  that they love one another as he loved them. 

I was able to receive the clinical trial infusion today, but it did not come without sorrows.  The rash was the first issue.  It has cleared up significantly, but it was a rash that grew over time, and as a result, what the doctor is concerned about is that it could begin to regrow and perhaps even require hospitalization if it were to fully cover my body and extend into my mucous membranes.  But, of course, this is an early stage trial and they can't predict how it would behave.  Having survived the rigors of a Tarceva rash, it was a no brainer for me to brave the unknown here, even though when Diane asked Dr. Martins what he would do, if it were him, his response was that he probably would not do the infusion.  But, he qualified, he couldn't really say unless he was truly in my shoes.

The second, and more serious issue is that my tumors, according to the clinical trial radiologist back at Bristol Squibb Myers, have grown 21%.  The cut off  for participation in the clinical trial is 20% growth.  The UW radiologist, who initially read the ct scans after they were taken last Saturday, opined that the tumors were stable. And it seems that they have only grown by 5% if you look at the comparison:

Mediastinum: Necrotic mass in the aorticopulmonary window is stable in size, measuring 3.6 x 4.1 cm, previously 3.5 x 4.1 cm. Stable right hilar lymph node measuring 1 x 1.2 cm (4/31).

Lungs: Left lower lobe posterior basal segment pleural-based nodule is stable in size currently measuring 2.3 x 2.4 cm (4/57), previously 2.5 x 2 cm.
But the baseline are the ct scans taken in January, and I don't have copies of those to use in my layman's math calculation.  I have requested copies and we shall see.  If the tumors continue to grow on the next set of ct scans, I will be dropped from the protocol.

The problem is, if I drop off this clinical trial, there aren't many options for treatment left to me.  Avastin, is a drug which might be a possibility.  It operates by killing new blood vessels, and thus starving the tumor.  But it is only indicated as first line treatment for lung cancer, and I would be on my fifth line treatment at that point in time.  Dr. Martins said that there is a similar drug that is administered in pill form that has shown some great promise but I would have to petition my insurance company to pay for it, as it is not a recognized treatment.  The cost for the pills is $6,000 for a month's supply.

So with all this to think about, I went to my church's Maundy Thursday service and heard the command to love one another as I have loved you.  Brave words that I am coming to better appreciate in their context and in mine.


MarkH said...

Thinking of you here, Moe. Mega-prayers heading your way.


Nimble said...

(Our priest reassured us that foot washing was optional at Thursday's service.) I am thinking of you and the steep hill you're looking at. I want you to be bowled over by laughter. Marx Brothers, Daily Show, Big Bang Theory, whatever it takes.

Rana said...

Here too. And if it comes to the expensive pills, let us know. I can't contribute much, but would toss in my mite even so.

Jolene said...

Aw Moe, this stinks. I am holding you in my heart.

Anonymous said...

We're thinking of you, Moe.
Have you ever visited St. Martin's? I just discovered I have an old friend and mentor who may still be on the faculty there.

Jolene said...

Moe, when will the next CT scans be?

moe99 said...

Jolene, right now they are set for May 31 after more infusions on May 5 and May 19. They may push it out so I can have 4 infusions before they do the ct scans. I will let you know when I find out. Thanks.

Jolene said...

Good to know. Am glad to hear that there is more treatment in your future--at least in the near term.