Frankenstein’s Experiment

We woke up early this morning in Hull, MA in order to make my 8 AM appointment at Dana-Farber in Boston.  I always have to make light of the situation to ease the tension: today it was the gown, at an earlier appointment it was the pain rating scale.  I don’t even know how to make most of those faces??

Stylish Hospital Gown

I Think I'm About an 8

My appointment with Dr. Andrew Wagner focused on potential medications that would ideally slow, stabilize, or even shrink the tumors that are evident throughout my entire right leg.  This follow-up appointment did not yield any surprising break-throughs, but gave us an opportunity to talk more specifically about medications available, since excision and radiation are no longer options.  I leave the details to Ryan, but as I understand it, my choices at Dana-Farber are a traditional chemotherapy, chemotherapy supplemented with enhancing drugs, or a clinical trial.

Chemotherapy – chemo has not shown much success in fighting Clear Cell Sarcoma.  It also has significant toxicity resulting in the side effects that we are all so familiar with: nausea, fatigue, etc.  Finally, it is administered at the hospital in a strict regiment requiring frequent visits.  When chemo is combined with other enhancing drugs it has shown better results in some types of cancer, however, it is still not effective on CCS.

Clinical Trials – there are three different clinical trials that were suggested and currently open to enrollment at Dana-Farber.  I won’t even get into the specific names or science behind them as it was extremely complex and difficult to follow.  What it came down to for me was that one specific trial using a c-MET inhibitor called Crizotinib, has been used by other CCS patients and shown some success at stabilizing the disease.  However, CCS is so rare that it is difficult to accurately quantify the results.

Today I decided to enroll in the Crizotnib clinical trial because it has shown the best results, has virtually no side effects, and is taken as a pill at home.  I feel that this drug gives me the best chance against CCS and also allows me to continue traveling.  However, it will require that I travel to Dana-Farber routinely so they can monitor the effectiveness of the drug.  My only frustration is that the earliest I will be able to enroll and begin taking the drug is January, 3 2011, in approximately two weeks.  I have already seen the tumors in my leg get progressively worse over the last two weeks and fear what two more will mean to the functioning of my leg.  Although they help select the best drug for the patient, the focus of a clinical trial clearly seems to be on studying the drug.  I am officially an experiment.

After my appointment we made our way back to Logan Airport and flew from Boston back to Orlando.

Day 17


About bhoefen

Going on a road trip.
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15 Responses to Frankenstein’s Experiment

  1. Carol burke says:

    How to annoy the doctors and nurses in one easy step with the pain scale – tell them an number that is NOT on the scale. It was very entertaining for Holly. Bret, I can’t tell which one you are on the scale. None have glasses!

  2. Michelle, Mario, and Simona says:

    Stay Strong Bret, this sounds like the best option for you. Just to put it out there but how about a trip through NYC on your way to Boston?? You guys would have a couple hospitable hosts awaiting you! We love you and are thinking about you.

  3. Jessica says:

    Bret – I got a chuckle out of the picture of you in the hospital gown. The look on your face reminded me of so many Thanksgiving mornings – you don’t really look awake yet! Maybe you would have felt better if you had some pie for breakfast?

    I’m so happy to hear there is a clinical trial option for you that you can do from the road! I know Jan 3rd seems far away. I wish you patience and the courage to continue to enjoy every day as you wait…

    We miss you guys up here!

  4. Emily I. says:

    Ah! The funny faces pain rating scale! They showed me that silly thing when I ended up in the hospital overnight for my diabetes diagnosis…”Point to a face” and I was like… “Um… well… I’m diabetic – I’m not in any pain – but I’m sure as shit not happy about it soooo….” As if being labeled T1 wasn’t enough? Now group yourself into another category for our statistics… You fit into the :-/ category! haha! I thought it was so asinine. REALLY people??

    Anyways! Glad that you made the trip to Boston and that you found a clinical trial that fits you. Just remember that by participating you’re helping other people with CCS too (I know that you know that, because you’re much, much smarter than I am but it’s always nice to read those things sometimes even if you know them already, right?) Expect a couple donations in the mail by the end of this week or early next week at Aaron’s house! Should help with all of those plane rides you’re going to be taking.
    OXOX Emily

  5. Aunt Bo says:

    Welcome to my world of clinical trials. Ryan sent me several articles on the drug and I look forward to reviewing them. Clinical trials are my life so if you and /or Shannon have any general know where to go. I am here for you!

  6. Caroline Borrelli says:

    Hey Bret,
    Definitally let me know when your coming back to Boston hopefully we can get together! 305-469-8219 🙂

  7. Reggie & Mary Lee says:

    Hey Bret – I think your face for the pain scale looks like you are really becomming a pirate – maybe you should have put a patch over your eye and taken your sword with you!! You might still call that guy about his herbal remedies as his thing is to build up your immune system which couldn’t hurt for any of us. So glad to hear that there is a clinical trial for you to try and VERY happy you are not going to have to go through chemo at this point. (YUCK SYUFF!)
    Love, Mary Lee

  8. Marianne Borrelli says:

    Well your trip to Boston did have some benefits. It gave you choices. You have much counsel that can help you to make those choices if you so choose. Ultimately it is all up to you …… scarey I agree. But you know what’s best for you.
    2 weeks does seem like a long time….. Is that because of the Holiday or does it take that long? At least the trial sounds like you can do what you want and will not beso sick, as with chemo.
    You have to find positive in all this negative. Such as……….

    You can see snow only when you travel to Boston without having to shovel it!
    You can always return to a sunny warmer climate!
    Your family has given up everything to be with you and support you!
    Your wonderful wife is so dedicated and supportive!
    Your work friends are amazing!
    You have eaten some fabulous food
    And visited some great places!
    You realize how much you are loved in times of crisis ( too bad it takes that long sometimes)
    You have tested your writing skills with this blog and have gained a following of many faithful followers!
    You inspire us all to live life to the fullest!
    You are an amazing man who will continue to make good decisions to fight this disease and Ride in a Good Directions!
    We love you! Keep finding something positive to hold onto!

    Love Auntie Cuz,

  9. Debbie says:

    Hello again Road Warriors!

    Uhm..question? Why are you required to wear a hospital gown OVER your clothes? Now, that just seems incredibly silly in my opinion. I would have asked for the face chart that reflected my opinion on HAVING TO WEAR A STUPID GOWN.

    And I think your friend is right–you do look like a pirate in that pic. I think spending a wee bit too much time in the Keys left a more indelible mark on your psyche than the tats did!

    But in all seriousness–I’m so glad that you’re going to be able to do the trial drug, especially since its only a pill and you can do it from home. Sooo–a little travel to and from Boston won’t be too bad! Think of all the lobster and clam chowdah you’re going to be able to enjoy while there. And I’m sure there HAS to be some kind of lobster BBQ in that city you can sink your teeth into.

    Continue to pray for a holiday miracle and continuing to wrap all of you in my arms and hug the dickens out of you all. Love you so much and can’t wait to see where you’re going next. I still vote for New Orleans 🙂

    Love you! And as always-my heart travels with you with every mile you cross.


    • Shan (Shannon Hoefen) says:

      Love that comment Sissy! If there isn’t lobster BBQ to be found in Boston, then I think we have a million dollar idea. We are definitely eating and drinking our way across the country…I’ve grown since you’ve seen me last 🙂
      Love you big time! I’m thinking of the Christmas song “I’ll be home for Christmas if only in my dreams.”

  10. Khawk says:

    Brett, the gown is definitely not your color .. do they offer black Harley gowns? Please know I think about you and Shannon every day…the blog is amazing .. and we all are wishing you the best. Also, my middle daughter, Hannah, has taken a unique interest in you and your story as well. She remembers you on the bike when you stopped by the house. I will have to show her the great blog and wonderful pictures 😉 Keep pushing for an earlier start with that treatment. .. more Boston trips … more Lobster dinners 🙂 God bless!

  11. Scott says:

    Glad to hear there was something for you in Boston!
    I know it’s not one of the local joints that you’ve all been going to, but if you want a break from spending a whole bunch of money on dinner, and would like to chow down on some great Italian food, I’d like to set you and the family up at one of your local Carrabba’s in Orlando, my treat… let me know.

    • Shan (Shannon Hoefen) says:

      Scott, that sounds awesome! I think Orlando has become our home base so would definitely like to meet up soon. Thanks for the wonderful offer. We actually left Orlando today to head for New Orleans…more food to be tried, this time Cajun style. Will definitely give you a ring when we head back to base camp. Right now we’re waiting to hear from Boston to see if they can move Bret’s trial date up.

      • Scott says:

        I hope you have a fun trip, I actually live in New Jersey right outside of Philly, a GREAT city if you take the long way home… I have connections with all of the Outback, Carrabba’s, Bonefish restaurants around, but why go there when there are so many unique places to visit, but if you’re ever driving through, shoot me an e-mail and I can at least tell you where the best place to get a cheese steak is, my secret.

        Another note, I was looking for a CCS group to reach out to towards doing some special events for as I have quite a large budget to use for doing so, but was unsucessful. I did however, meet with a guy associated with a group researching cures for Frederick’s Ataxia, a pretty nasty neuro-muscular disease that affects teenagers, completely out of the blue. Healthy one day, the next day you’ve got an expiration date, (the group is FARA) So, I’m going to help them out as well! We’re very excited to get involved. I just wanted to let you all know how much your Blogging has inspired me, even though we don’t really know each other, to want to be a better person overall… I know, it’s cheesy, but thanks!

  12. Karyl and Rod Wixted says:

    Hi Bret !
    Glad to see there is a drug for you to try. You never know if it will help unless you give it a go. You’re an amazing young man and an inspiration to all! You’re in our prayers constantly. Hello to Mom and Dad for us.
    Hugs to all – Karyl and Rod

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