Friday, April 29, 2011

Two Days to Go!

The Walk/Run for Air is Sunday May 1.  Last year it was on the UW campus.  This year we will be traversing Magnuson Park.  So far we've raised over $1800 for the American Lung Association of Washington!  Yay team!

I'd like to thank the following friends who have sponsored me and our team, DeFeet Lung Cancer this year:

Kurt J.
Diana C.
Olive D.
Katy K.
Anne G.
Bill H.
Mildred W.
Renee L
Anasasia S.
Ann S.
Janet B.
Pam P.
Chandler F.

And my team members who will be walking with me:

Anne H.
Merilee B
Andrea T.
Peter K.
Eric P.
Amanda G.
Peggy J.

There is still time to sign up to run/walk or to donate to the cause.   Thanks so much for all of your support.  It is truly treasured.

Ok, I cannot resist posting this picture.  It gave me a laugh for the day:

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.

Monday, April 18, 2011

Ain't too Proud to Beg

No word yet on the ct scan results.  I will send an email to Dr. Martins later today, after I am done pretending to be an appellate judge at Seattle University for their moot court.

In the meantime, if you haven't signed up for the Lung Walk on May 1, please do so.  We've raised almost $750 for a great cause.  Six folks have signed up to walk with me.  And even if you can't come, consider donating.  My team is DeFeet Lung Cancer.  You can sign up at  Be sure to indicate that you are part of DeFeet!  Thanks so much.

Saturday, April 16, 2011

Ct scan Saturday

My daughter, Sarah, the saint, went with me today to my ct scans.  She kept me in good humor with her teasing then we came home and finished the first season of Glee together.  A wonderful mother/daughter bonding experience.  Now comes the wait for the radiologist report.

As we do, I invite you to watch this video.  It is a veritable mindbender, the combination of two very different genres, but incredibly moving. Please double click on the screen to get the full effect :

Thanks to Cat on the Dunnett openforum yahoo list for the recommend.

Wednesday, April 13, 2011

CT scans moved up to this Saturday am

My next ct scans were scheduled for April 20th but in view of the fact that I was taken off the clinical trial, they have been moved up to, hopefully, show that the experimental drug, while rash inducing, is also killing the tumors.  We can try and use that as a lever with the folks at Bristol Myers Squibb.  If the tumors are growing, however, all bets are off and it is back to the drawing board to pull a 5th rabbit out of the hat.

So fingers crossed, as I mentioned earlier on Facebook.

Thursday, April 07, 2011

A setback

They postponed my infusion today.  My rash has increased and covers about 70% of my body and lacking anything else to blame it on, the protocol for the clinical trial requires this.  So I've been prescribed a pound of corticosteroid cream and told to use it twice a day all over. They've moved up the ct scans to next week sometime.  So we're back in limbo.