Monday, March 7, 2016

Brain cancer is...

...making for a pretty tough day.


The Baby kept us both busy today.  Then, tonight, Dr. Park called with the MGMT marker results.  Darrell's tumor is MGMT negative, which means that it is probably less receptive to chemotherapy than if it were MGMT positive. 

The most accessible explanation I have found for how the chemotherapy agent (temozolomide) kills cancer cells, and how MGMT makes a difference, is found on Wikipedia. Read, in particular, "mechanism of action."  All my other readings have been scientific and harder to decipher.  If  you find something better, please  share.

The implications for the near future are that
  1. Darrell's not a candidate for the local clinical trial (it's for MGMT positive tumors).
  2. He's also not a candidate for the UCLA trial.  The UCLA trial IS for MGMT negative tumors, but the timing was off.  The most important thing is that Darrell get standard of care treatment, which is radiation with simultaneous chemotherapy (temozolomide), as fast as possible; we couldn't delay treatment awaiting marker results.
So today was a pretty tough day.  Here are some bright spots.
  1. Dr. Park is calling around for other clinical trials for MGMT negative tumors. 
  2. Regardless of any markers, Darrell is getting aggressive treatment--as fast as possible.  GBM is very fast growing, so this is critical.
  3. We appreciated the visit by dear friends, HBT.
  4. Dinner by G was fabulous...so appreciated!





Thank goodness for the bright spots.

Our Take on Clinical Trials
  • As you know, Darrell is very much interested in participating in a clinical trial (we're "Pro" clinical trials).
  • However...they are not a replacement for standard of care treatment. Good care with scientific evidence is the most important thing right now to fight the disease.
  • Half the people in a clinical trial do not get the experimental treatment, and the experimental treatment is (by definition) unproven.
  • We are still, by the way, going to head to UCLA for a consult.
  • Some of you are on the look out for appropriate clinical trials for Darrell. You go. If you're checking them out, you'll want to know Darrell's stats: GBM, primary tumor (not recurrent), MGMT negative (if they mention MGMT status being a variable), and he'll be post treatment (chemo and radiation)--in the maintenance phase.  Check out any trials you find at clinicaltrials.gov  You can see their status, as in whether they are currently recruiting.  (Some of you cope by researching; this final bullet is just for you.  If you cope in other ways, keep on coping.  As we say, Dr. Park is actively searching for trials.)
Thanks for reading.  Tomorrow has got to be brighter.







3 comments:

  1. Still in our thoughts daily. Sending our best. Love to the family.

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    1. Thank you so much M!! We need all those daily thoughts!

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