I have recurrent Gliobastoma Multiforme (I think). My GBM has been sort of a shapeshifter, growing and shrinking, but mostly growing a few millimeters at a time. This time, it grew more than within the comfort zone of the Northwestern Tumor Board, so I am signed up for my 3rd (gulp) craniectomy (or craniotomy, I can never tell for sure). I could easily google the difference, but I choose ignorance. I am not sure how much Craig Alguire will be left after this surgery. After consulting with my PCP, I am only going on short term disability, but that may morph into long term disability.
I think I am having this at the University of Michigan. Duke has always been attractive, especially with their poliovirus therapy. That helped 20% of the population really well against ‘historical controls.’ That’s not the headline. The headline is that it is a “breakthrough treatment for GBM.” I consulted with my first surgeon and the love of my life (JK, but not really), Shawn Hervey-Jumper. I trust him with my brain. He had a “slight” lean toward the Tocagen Trial, another form of immunotherapy. This trial is much further along in research, and now into phase 3 trials. The poliovirus needs to go through phase 2 and then phase 3 trials to prove effectiveness. The Tocagen Trial is randomized, so I have a 50% chance of receiving placebo. If placebo is the case, we have a back-up plan of taking an EGFR inhibitor instead (again, not proven to work in GBM, but what else is?). The poliovirus trial was published as a phase 1 trial in the June 26, 2018 New England Journal of Medicine. That is the most prestigious medical journal, but a long stretch for a phase 1 trial. Oh, and thanks for all the links. Yes, I did see it ;).
If you google Tocagen, the title of the first page states, “No One Should Die of Cancer.” Keep talking, you have my attention. Totally agree with that statement. If I actually get in the treatment arm, I will let you know more about the mechanism. Otherwise, I will take an anti-EGFR inhibitor which targets a protein on the surface of my tumor cells. If I fall into the placebo arm, I will also let you know more about the mechanism.
That’s my story. That’s where I am at. Now, as requested by Meg Weller, here are some pictures of my kids.
Figure: Upper left, Connor off the blocks. Upper right, Allison and Staci posing. Middle right, Allison swimming. Lower left, Gen and Coach Jim having a moment. Lower right, Queen Elizabeth and Connor showing their Stars and Stripes gear. The Queen won the most patriotic participant.
Figure: Left, the partial gang of cousins. Middle left, the ‘littles.’ Middle right, our 17th anniversary (neither of us really like cake). Far right, Mia and Tai brought their progeny.
Figure: Upper left, Uncle Jim and Mia steering the boat. Upper right, the Queen and me. Middle right, all of the cousins. Lower photo, my work buddies.
Think of you and your family often.
Amazed by you optimism, strength, and courage.
Kate Ekedahl
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Take a deep breath and continue the journey. All of your prayer warriors are right here with you and your family. You are surrounded with team Craig supporters as we all hold hands in prayer and ready to kick some cancer ass. You have got this. God has a plan. Trust in the plan.
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Oh, no-I don’t want to hear that. So disappointing. Thanks for telling us so that we can be praying for you and your medical team as you make decisions. We still want you around for a long long time. I will be praying for wisdom for you and your team in the decision making and skill for the surgeon. Praying that your personality and your memory and all that is “Craig Alguire” will be preserved. And even praying for a miracle reversal of the tumor growth and healing. I certainly hope you can be back to work with us again soon. But in the mean time just focus on your healing and time with your family. We need you and your patients need you but your family needs you the most.
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Praying for you and Stacy and your entire family. It’s been a long, yet hope filled journey for all of you. It’s amazing how you are all still living – with humor and enjoyment! Blessings
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Read this to my family, who are all very much Team Craig! Sorry to hear this news, but amazed at you and your family’s grace and fortitude. We are wishing you all the best and agree that Dr. Hervey-Jumper is pretty dreamy. 😉
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Oh Craig, how disappointing. You have the largest community support imaginable, you have prayers from across the world, have it known that everyone is rooting for you. You have insight and knowledge that most patients don’t, and it still is tricky to navigate what the right choice is. My prayers are with you and your amazing family. Hang in there through this.
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Craig, continued prayers for you and your whole family. Trust in the journey… no one knows what Hod has in store, hopefully it’s a blessing for you and your family!
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God!
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Continued prayers for you, Craig, and Stacey and your kids and your entire extended family as you go through yet another surgery. God is good. Let Him shine.
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Thank you for the information but I bet your mom and I didn’t understand much of it because it wasn’t in knitting terms. Prayers for your family as you
are on this journey.
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Continuing to pray and have hope for you and your family. You are stronger than cancer!! You can do this. (fist bump, high five and hugs)
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Prayers for you and your entire family.
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Craig..we’re all here for you.. TEAM CRAIG will all be praying. God is listening and will take care of you through this..just believe with all your heart!
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Still holding you in my prayers….
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I remember you very clearly from ages ago as swim team member..I just want you to know I stumbled upon this because if Liz (Vanderleest) Elifson. I am rooting for you!!!! Michigan is probably fabulous & top notch. I’m not living there anymore & was treated for a neurosurgical procedure at Duke. They were amazing & gave my life back to me. So, if you end up there, you’re in fabulous hands. Best wishes!
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Continued prayers for you and your family.
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There are no words. Only Spirit breathed thoughts sent out to the God who is the Source of all things.
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Praying for you Dr Alguire! You are a hero to many people ! Thanks for keeping the people that love you informed!
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Just wish I could make it all go away. You are amazing.
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Our hearts go out to you and your family. We are sending more positive energy your way.
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Thanks for your post Craig! Stick with the humor and resilience that has taken you this far……You are such an inspiration to us all! ¨You´ve got this!¨ Thoughts and prayers coming your way from the Ledet clan in GH!!!
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Surrounding you and your family in prayer!
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I am so sorry to hear this. Prayers continuing for you and your family. God has this even if we do not understand His plan.
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Praying for you and your beautiful family Craig. I know you will continue to hang tough and live strong! God bless.
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We continue to keep you in our prayers. You are such an amazing man!!
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We had an appointment today, which of course you missed, understandably. I was probably the easiest appointment all day too (Amy said so). I guess I will have to keep up my end of the bargain so that next year you will have the easiest patient of the day. See you then and thank you for sharing your journey, your fight and your humbleness. Great life lessons Doc.
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You and your family will continue to be in my thoughts and prayers during you battle with GBM. Recurrence is a difficult word to hear. #GBMsucks
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You and your family will continue to be in my thoughts and prayers during your battle with GBM. Recurrence is a difficult word to hear. #GBMsucks
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My heart stopped when I read this, good thing I’m a cardiology nurse! But seriously, I think of you and pray for a cure every day. You are the strongest, most positive person I know, if anyone can beat this, it’s you! Please keep us posted on your journey and I’ll continue to send up those prayers.
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Love to you, Craig.
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Sending you support as you enter this next phase of treatment, Craig.
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Our hearts are so full of hope and positivity and love for you Craig and Staci and with your kids and MK, Tom, Amy, Katie and their families. Wishing all of you peace as you move into and beyond tomorrow. We love you always.
You are The Best. xoxoxoxoxoxoxoxoxoxo
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As always, you and your family are in our thoughts and prayers. Craig & Cathy Simons ( Jeremy’s parents)
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Hey Craig… it was so good to share a lunch with you in June. I think of you and your beautiful family often. Hoping and praying for the best possible outcome for you!
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My brother, Chris Whalen, talked about you often. Hoping for the best possible outcome and will keep you in my prayers.
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