Hopeful and Heated: Reflections on the Protégé Encore Trial in Seattle, Washington

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I was diagnosed with type 1 diabetes this past March (see here for my diagnosis story).  After weeks of poring through websites, hours of talking with my family, and what seems like way too much contemplation, I decided to give my diabetes over to the hands of clinical research.  I am still working through the angry period of my diagnosis, but I remain ever faithful that life will go on—and abundantly.  So, about a week ago, I packed up my car with all of my earthly belongings and drove from Austin, Texas, to Seattle, Washington, to enroll in the Macrogenics-sponsored Protégé Encore study.  I completed various questionnaires and interviews through email, phone, and fax, I flew up here for a final screening two weekends ago, and I was finally able to begin the study last Friday.  I never would have guessed that, at age 27, I would be moving my formerly-care-free life across the country to be involved in a trial for type 1 diabetes, but here I am, IV pole in hand.  I arrived in Seattle late Wednesday night, went climbing on Thursday, and then lay in a hospital bed for most of Friday.  Oh, life.

This blog is a place where I hope to answer questions about the study, shed light on what it means to be a part of research, and generally expand on the ups and downs of my diabetes.  When I was first diagnosed two months ago, I immediately began searching for other young-ish adults who were recently diagnosed and came back with very little company.  If you’re out there reading this, then I want to know you.  And I want you to know that we’re in this together.  I want to share my experiences in this study with the hope that it may be helpful to you.

Here is the link for the trial itself: http://www.protegediabetes.org/

And here’s hoping that more of us can bind together.

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Jenn
Jenn

I am in Protege too and in March was getting my first infusion. I remember sitting in the hospital bed while the Dr. talked to someone else about a new recruit he was working on from Texas. And it looks like that was you. Small world :)

Laura
Laura

Hi Emily, My mom sent me a link to the site your blog appears on and yours was the first blog I read. I am 26 and was diagnosed with Type 1 on February 1st. Like one of the other posters, I too thought I was some kind of medical anomaly. My best friend who is a nurse thought my fear of diabetes due to massive weight loss and thirst was nuts because I was so “old.” Alas, there seem to be more and more and more and MORE of us out there. I moved through anger pretty quickly but… Read more »

Steven Goodfriend
Steven Goodfriend

My 10 year old son has completed both phases of the Protege trial. He was diagnosed on Sept 2nd 09.  His last a1c was 6.1 and more importantly, he DOUBLED his pre-trial peptide response on the mixed meal test.  From a .9-2 to a 2-4.  These numbers may not make sense to you now but they will.  He is on one third the daily insulin before the trial.  I think we hit a home run here.  Good people and a good start at finally halting the progress of this disease.  His glucose was elevated during the trial, but dropped back down afterwards. … Read more »

Sarah
Sarah

There was a Simpsons episode where Homer lined his throat with wax so that he could eat all the chili he wanted without suffering from the spicy peppers. If you cover your IV port with a bandage, then saran, THEN pour wax over it, you could probably enjoy all 10 fingers shampooing your scalp!
Thank you for sharing your frustrations, reflections, and revelations as you learn to incorporate diabetes into your phenomenal life of love and adventure. I hope this blog brings you a great network of support and supports others in need of hope.

Travis
Travis

Emily, I received this web site/blog from a friend that knows you personally.  I wanted to say that I’m sorry to hear of your diagnosis and wish you lots of luck, fun, and joy in the process of clinical trials.  I have been diagnosed with type 1 diabetes for 11 years now and am probably still in the anger phase.  If I’m honest, I don’t even keep myself accountable for my numbers; and I keep promising that I’ll be better one day.
Good Luck to you and let me know if I can help.

Tim Y
Tim Y

I am a parent of my 9-yr daughter recently diagnosed.  We have had her screened the the Protege Encore study in Ogden, UT, and are still awaiting final results from it.  I would love to hear how you are doing, and your opinions on whether you would put your own daughter in this study.  It have been a very difficult decision to sign her up, but we have heard so many good things from participants.  I just hope they aren’t hiding the bad stuff! 

Becca Kantor

Emily, I’m really looking forward to reading more of your posts and seeing how the study progresses. Good luck!

Carol

Hi Emily.  Hope your participation in the study goes well!  I was 27 when I was diagnosed, and thought I was a medical anomaly.  Especially since my GP said he had never seen a case like mine (20’s, fit, etc).  But there are actual quiet a few of us late onset type 1’s out there.  Thank goodness for the internet so we know we are not alone!  I’m about to turn 44 and enjoying life.  Hope the same for you!

Esther
Esther

Well, here’s Grandma thinking of you all the time. I’m so glad to see you are blogging. You look well in you photo! Keep it up.

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