Snyder Family Blog

Christian again.  Well, the Chicago trial drug didn’t work well enough.  Nothing new and everything was stable except some lung lesions, but they grew enough to require a different path – this will be the sixth drug regimen.

What’s next?  Well, I had circled up with my doctor prior to CT results to plan for unfavorable results……so we have two things going right now:

Firstly, there is a drug not yet released by the FDA called ET-743 / Trabectedin / Yondelis.  I can get access to this drug at the Norton Cancer Institute in Louisville under compassionate use.  IU does not offer this due to the additional costs for compassionate use, they would if it were FDA approved.  My understanding is that there are additional regulatory and reporting requirements to maintain when a drug is release as compassionate use.  Norton have been carrying this drug on studies for ~10 years, so I expect the drug company might help with the costs - something to find out.  I have to stay as an in-patient for a 24-hour infusion every 21 days.  Different, but that’s just how they administer this drug.  The good news is, I can have any other work carried out at IU – blood, CT, etc.  Start dosing next Tuesday the 2^nd!  Side-effects are not expected to be extreme….will see.

The second parallel path is with the IU Genomics group.  They had previously been focusing on breast cancer, but have recently expanded scope to take hard-to-treat patients with other cancers….like me…)  They partner with a company call Paradigm that supposedly has the most extensive and cutting-edge genetics testing approach available.  The doctor said this is the billion dollar test 10 years ago.  Now it is ~$5k.  They do a full genetic sequencing of the tumor to look for “typos”.  Then hopefully they have something in “all of the cancer treatment universe”-my words…..that could provide a benefit against what they find.  There are a number of companies, and many tests available.  I already had a Foundation One test in Boston, but nothing came of it.  This Paradigm test is supposed to be much more extensive.  Why didn’t they do this earlier?  This is early days for this “designer” activity, mainly due to cost.  I’m thankful it is available now and hope something comes of it, in spite of some doctors reservations on its ability to tell us something useful.

For the genomics testing, they can use stored tissue from my last surgery (lung), but I’ve been treated with three different drug lines since.  It is generally thought that the tumor response could have changed over the course of these treatments, and so the doctors left it to me to decide if I wanted a new biopsy…….Well, of course!  Let’s give it our best shot.  So I get a core biopsy of the lung on Friday.  I had two needle biopsies of the liver for the last study, but this is lung and the big needle.  Good news! - I appear to be a ripe specimen for them with a great tumor location as the nurse said they were going to sequence my twice, once for free…..”What?”  They are going to do both core (bigger needle) and fine needle (small needle) and compare the results to see if they can get the same level of fidelity with the smaller needle.  That works….more eyes interrogating my data.

Thanks to Fraternity brother Chuck Denning for another “SnyderStrong” souvenir t-shirt from the half marathons he runs.  Possible thanks out to Gary Mountjoy as he claims he runs triathlons of varying lengths for me since I can’t….I can’t be sure without a souvenir though….

Luke and his pre-K graduation!  Really happy Keri is able to stay home with the two kids - big summer plans!!

Lily (2nd grade) received one of the two year-end art awards at Kitley Elementary this morning that are permanent at the school!  Proud parents.

Just over $5,000 was raised at Lily's annual lemonade stand!!!!!!  Lily had a great result from her lemonade stand to go to a great family with a 6^th grader battling cancer.  Thanks to so many of you, family, friends, strangers.....near and far, for making life better.

See more by joining the Facebook group at:   https://www.facebook.com/groups/1551248338477525/

Overdue thanks to Ellen and Anthony for sponsoring a nice Valentines dinner for Keri and me.  Unnecessary, but great!

Many thanks to all of Keri's friends who are a tremendous help and support! She's always bragging about those MOPS moms, one of which is Angie Worden, who took some great family photos! Thanks, Angie!

My friends are awesome.

Family - they fill all the holes!   Thank you!.....Especially my lovely wife for everything!

Keep praying people – Happy summer!


Christian, Keri, Lily, Luke