Brain cancer is...

...facing a larger team, starting today.

We're posting early today, knowing that Team D would want to hear about the UCLA visit.


It was overall very positive.  Darrell feels particularly good about.  First the information:

Today's Information

• UCLA has an integrated, team approach.  That means we met with Nurse Practitioner Nanette first, who took Darrell's history and did an exam (Darrell was so ready to memorize the words!).  Then she left, presented the case to Dr. Cloughsy, then both of them (and an NP student) came back in and stayed for the remainder of the appointment. 
• Dr. Cloughsy agrees with Dr. Park's plan for adjuvant therapy (maintenance phase).  There's just no evidence to suggest something better than the plan to continue with Temodar five days out of every month.
• No clinical trials work for Darrell at this point.  They are for people with either brand new tumors or recurrent tumors. Our job, as team members, is to send "anti recurrence" thoughts/prayers/points of light to Darrell's lovely head (particularly its left frontal region, if that helps you aim your anti-cancer beams of goodness).
• Darrell's tumor doesn't have interesting mutations that make him a good candidate for some of the innovative drugs making the news.  That might change in the future.
• The next MRI (done later this month) will serve as Darrell's new brain baseline.  We hope to see no "tumor progression" or "activity" in that scan, and that scan will serve to inform any new treatments Dr. Cloughsey might suggest.
• They approved us to travel and gave us prophylactic prescriptions to make the travel easier (namely, pills for Darrell to take if he were affected by altitude or had symptoms).
• Dr. Cloughsey was fine with the tinfoil hat, but he was more guarded in potential positive effects.  The fashion statement is unparalleled, that's for sure.

Gratitude Stuff

• Dr. Cloughsey is interested in continuing with Darrell's case.  In fact, he wants us to move up the MRI scan so that he can see it right away.  Darrell feels fortunate that Dr. Cloughsey said yes to Darrell's case, as he sees patients only once per week.  We will continue with both Drs. Park and Cloughsey.
• It was good to hear our Dr. Park's decisions confirmed by a GBM expert.
• We could see why Dr. Cloughsey is an expert.  He knew the research very well and spoke about it in ways that kept it complex (there are no simple answers) but while helping us see that the research is a tool for making decisions.
• Both he and the NP gave us their email addresses and encouraged us to write, 24/7.
• We learned what potential symptoms of recurrence might look like and what we should do if we observe them.
• Nanette suggested a form of speech therapy that we love.  Finally!  She wants Darrell to read Dr. Seuss books aloud. We kept our collection.  Yess!  We'll let you know when we come up with Darrell's story hour.
• We feel in very good hands.

We hope your day is equally positive today.


We are going to go home and pack.  We hope to be posting from the Metropole in Catalina tomorrow.