Sunday, June 6, 2010

MY STARS! THUNDER AND LIGHTNING! RATS AND BLUE BLAZES! SUFFERING CATS! BLISTERING HOP TOADS! ZOUNDS AND GADZOOKS!

If you are familiar with the children's book "Elbert's Bad Word", you 'll understand the title.  For those who haven't read it, the moral of the story is that sometimes you need strong words to express how you feel but they don't have to be bad words, and the words above are the ones used by Elbert when the croquet mallet falls on his toe.

This week I needed strong words to express how I felt.   

Last week was the end of another 9 week segment, so I had scans again.  And unfortunately the scans show the primary pelvic tumor is growing back.  It turns out that they now think that it was still there when I had my last scans in March just really well disguised.  In all the scans I have seen so far, there has been a definite visible boundary defining the perimeter of the tumor.   Turns out in the March scans the boundary wasn't visible and it blended really well into and looked just like the soft tissue around the site.  However the Braf drug had worked.  They are saying that it shrunk it from 5.3 cm in January to 1.4 cm in March.  Now the tumor is back up to about 2.4 cm. 

Honestly I am not completely surprised by this.  I had started feeling some pain in the area the week before  that felt hauntingly familiar to the pain I started feeling last summer. 

Since it is now apparent that the Braf drug is no longer working, I am no longer taking the drugs and I am drug free at the moment.  The next step is likely another targeted therapy that works similarly to Braf, just downstream on the protein chain I believe (I'm still trying to get educated).  This targeted therapy is called MEK.  And the clinical trial is again at MDACC.  Their trial is specifically for patients that have already been on the Braf drug.  There is a two week washout period before I can start this drug trial.  I will know more in the weeks to come about what sort of time I'll be spending in  Houston to as I start this new clinical trial.  


Despite this apparent setback, we are doing well and looking forward to a fun summer with the kids out of school.  Thanks very much for all of the kind words and prayers that have supported and helped us through this trial.

6 comments:

Jane Durham said...

Darn. Thanks for the update, we're hoping for you!

laura said...

That's one of the words I said too.

Kathryn said...

Dang it! I wish the news were better, but glad their are still more options. Hang in there and know that people are still and always cheering you on! xoxo

steph said...

Oh Ben, Dave and I are sad to see this! We're hoping for more permanent, good results with the next trial! We're constantly thinking of you guys! Hang in there.

John said...

Ben:

You're still our favorite structural engineer. You have a great attitude toward your challenge. We pray for your welfare and for success in your treatment.
With love,

Karen said...

"Darn" like what Jane said. We pray that the new drug will work and that the drs. can find the right combo to
kill the "beast." They are doing great things with research now on melanoma.