The Underdog

Last time I was in Boston, Dr Andrew Wagner mentioned a handful clinical trials.  Of those, we agreed that Crizotinib would be best for me.  Since then Shannon, Heather, Jennifer, Ryan, Makiko, Aunt Bo and Dr. O’Keefe have gathered a lot of useful information.  Most significantly, data on 12 patients with CCS that have enrolled in the Crizotinib trial; 3 achieved stable disease.  Only about 50 people in the United States are diagnosed with CCS each year.  Therefore, there are not a lot of cases to work from or statistical significance to these numbers.  However, from the best information we have, Crizotinib appears to have only a 25% success rate.  I can’t turn my back on that; I want to live!  I always liked being the underdog and coming through with a surprise victory.

Today we once again said goodbye to Aaron, Elisa, Kayla, and Ashlyn and headed back to Boston.  We were able to get my clinical trial moved up by about one week; this could be significant.  We flew out of New Orleans, had a layover in Atlanta, then arrived in our final destination of Boston.  Flying is already a burdensome form of travel these days with the heightened security and cost saving measures of the airlines.  Add a swollen and sore leg and it makes standing in lines, being cramped between tight seats, and long walks between terminals all that much more frustrating and difficult.  However, I am fortunate that I am not experiencing the pain and nausea that Chris Roberts (CCS Friends) experienced.

Boston Skyline from Ferry

George and Christine have been so amazing and again offered their nearby condominium and vehicle to support my appointments.  This is huge, we can’t thank you enough!  On top of that, they treated us to another delicious dinner, George’s lasagna.  Over dinner we reminisced on a lot of stories.  My favorite:

Me and my brothers had been skiing at Swain Ski Resort.  At some point I made a call home to Mom from Swain.  A woman answered the phone, and it didn’t sound like my mother.  “Mom?”  The voice on the other end of the phone responded equally confused.  I immediately recognized the voice as Christine, who was at home in Albany.  To this day I don’t know how I called Christine’s number; I didn’t have her number memorized?  It must have been some crazy configuration of the switchboards.  Although not the mother I intended to connect with, Christine has always been very much a second mom.

George & Christine

Day 23


About bhoefen

Going on a road trip.
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13 Responses to The Underdog

  1. Reggie & Mary Lee says:

    Hi Bret & Shannon – So glad they moved your trial date up a week we will all take anything they will give you! Also happy that you will be able to be home for Christmas – you might like sleeping in your own bed for a change! Shannon – great payback for wishy washy woman! I think I want to learn that song and routine – maybe we all could go on the road with it!
    Merry Christmas!
    Love, Merry Lee

  2. Sally Leeson says:

    Bret, I”m sure there will be a long line of folks ready to do a victory lap with you after that surprise victory!

  3. Brendon says:

    Underdog and Shannon,

    Great to hear you got your trial bumped up. If your going to be in NY for a couple of days, Lysa and I would love to stop over. JD would be happy to trash a different house for a change. Shannon, that’s some good work behind the camera.

  4. crissykid says:

    Hey, where there is action, there is HOPE! And I hope that you are in the percent of people that this helps. I am so glad they are moving on it one week earlier. Love to you both! Chrissy Kid

  5. grandma hoefen says:

    Hey Bretsky: I’m at the computer and i don’t know what i am doing. Hope to see you soon. Sound like you had fun in New Orleans. Katie is here with me now and patiently showing me what to do. Boy am I ever dumb! Love you!!!!!!!!!!!!!!!!!!

  6. Rachel says:

    Bret, I am so happy for you and your family that your trial was bumped up! =) I look forward to reading about you winning against CCS!

    Thank you again for sharing your story! I check every day to see where you and the family are. What an Amazing journey! Merry Christmas!

  7. Debbie says:

    Greetings Boston Road Warriors 🙂

    So amazingly happy that your trials got moved up too–not only does this mean that treatment can start earlier, but you get the chance to spend Christmas in Rochester. Nothing heals the soul (and body!) better than being around and with the ones you love at the hearth of the family home.

    While we here “down South” in NC, Virginia and beyond won’t be able to see you this Christmas or spend time with you-please know that we are with YOU at all times. Yes, this is something I post in every single post and probably your readers are getting tired of seeing it. But it is true–not a day (heck an hour!) goes by when you’re not in my thoughts.

    Bret- Hope is the hinge-pin of all things great. Hope is the great equalizer. Hope is the sunrise after the storm. Hope is the kernel of success that sprouts and grows. And while there is hope, there is still a chance for victory. I’ve said this before as well–but I am so proud of you and your amazing wife of your determination, your zeal and the love you continue to share.

    Love you all so amazingly much–and yes…you carry my heart with you with every mile you cross.


  8. Ellen Edmond says:

    I truly believe state of mind and spirit is the heart to a successful battle. The bump-up date is another upper, so today must be the best day yet. May your heart and spirit and family lead you to victory. And may this holiday season be the brightest one yet!

  9. Uncle Lee and Aunt Sharon says:

    Bret and Shan,

    We too are so thrilled you were able to get your start date moved up sooner!
    DITTO to Debbie and Ellen’s heartfelt words about state of mind, spirit, positive attitude, HOPE to overcome the battle and be victorious. You ‘ve already got all those things in your favor because that’s what you’re made of. We hold you in our hearts everyday and pray for that wonderful victory! CAN’T WAIT to see you Christmas Eve. – there will be a whole lotta love and hugs waiting to greet you!

  10. Marianne Borrelli says:

    Hey Bret this is my best day, hearing that your clinical trial has been moved up!!!

    Wishing and hoping for that Christmas Miracle!

    We are heading to Rochester now for a white Christmas!!

    Tell your mom and dad the family dessert party is at their house on December 26!!!!! Hope they got their invite!!!

    Love to all
    Marianne and Fred

  11. Margie Brogan (Colleen's mom) says:

    Hi Bret, I hope you don’t mind I asked Carol Burke (Holly’s mom) to forward your blog to me. I’m still trying to figure out how to connect with all of you. I did forwarda picture of Colleen to you. Don’t know if you received it. Colleen did a clinical trial with Dana Farber. The drug was ARQ 197. It ididn’t work for her and they dropped her from the study after about 5 weeks. THe next drug was from Smith Kline Glaskow and it was not a clinical trial. They sent the drug direct to her because it was a phase III trial which meant she had a 50% chance of gettting a placebo. She couldn’t risk that. As soon as I find the paper work on that drug I will let you know what it was. In the meantime, keep fighting and I will keep praying, and I know Colleen is watching out for all of you. Margi

  12. Ashley says:

    I’m so happy you made the trek to Dana Farber! Also glad to hear you were able to travel without too much pain, something I wished Chris could have had in his trips. Looking forward to hearing about the trials and the successes you will have 🙂

  13. Jessica says:

    George’s lasagne is worth the flight!!! Yum!

    I’m glad my Mom and George are making a home-away-from-home for you in Boston – much like your Mom and Dad eased my transition to Rochester… Family by choice is just as good as the real thing! Honestly – I’m just jealous that we live in the same town, but you keep visiting the rest of my family! Hope to see you soon.

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