Ready to be a guinea pig

Sometimes we think that we are in control and we get to pick from our options, but other times the choice is made for us.

The tissue from my biopsy didn’t have the biological marker the researchers were looking for, so I didn’t qualify for the Phase II clinical trial.

Since my last post, I’ve had 5 rounds of radiation to my back.  Thankfully the pain has almost resolved.  However, having more treatment (radiation) means a longer wash out before starting a trial.  Of the two Phase I trials in Indy, one required a 14 day wash out (ie, no treatment) the other required a 28 day wash out.  I’ve already been off systemic treatment (chemo) for 5 weeks, which is terrifying to think about.

So, I will be in the Phase I clinical trial.  I head over to Indy on July 3rd for a physical, ECG, labs, scans, etc.  Then I head back on July 9th to start the trial.  It involves a chemo I was on in 2009 (Xeloda) and an experimental new drug (TAS-114).  Both drugs are oral and taken twice daily.  I’ll take them for 14 straight days, and then have a 7 day “recovery” period before starting another round.  During treatment, there will be a lot of labs and vitals taken.  The first day will be approximately 8 hours long to continually monitor my vitals.

There seems to be a lot of misinformation about clinical trials.  No, I do not get paid to be on this trial.  I do get the two drugs provided at no cost, however the “standard of care” items (scans, labs, doctor’s visits) are billed to insurance.  Most trials work this way, the treatment is provided, but the other items are billed to insurance.

And, speaking of insurance, mine is changing…big time.  For the past 12 years, I’ve had phenomenal health insurance through my former employer.  When I go guest lecture to students, I try to share this wisdom with them…look beyond the salary offered, look at the benefits offered as well.  Anyway, my health insurance has run out.  So, now I’m forced to go on Medicare (which is what retirees are on).  Medicare pays for 80% of treatment related costs, so most people get an additional plan to help with the remaining 20%.  After a long meeting with a health insurance rep, it turns out there is only ONE plan that will pay for Phase I trials.  And, of course, that plan has the most expensive monthly premium.

Since traditional treatment has failed, my future will likely have many Phase I trials, so the more expensive plan is absolutely necessary.  So, I’ve finally humbled myself enough to have an online fundraiser.  All the info is here:  http://www.gofundme.com/jensmith

Last night while saying prayers, Corbin asked, “Can cancer make you die?” I said “yes” and he asked how. I gave a simple explanation (it keeps growing and takes over the body) and he said, “I wish it was like that giant and we had a rock.” David and Goliath. I was heartbroken and proud all in one moment.

Praying that Indy has the ROCK to slay the giant.

Jen

Living legendary as a mom with Stage IV breast cancer. Author of Learning to Live Legendary and What You Might Not Know: My Life as a Stage IV Cancer Patient.

  1. Tammi Clifton Reply

    Dear Jen – I am so sorry to hear you didn’t qualify for the Phase 2 clinical trial! You and Corbin remain in our prayers every night! Hoping that the Indy Phase 1 trial goes well for you!! God bless and healing thoughts your way! Love, from me and my Mom Linda!

  2. Sara Smith Reply

    Such a sweet, smart young man you have…must have a wonderful teacher in his Momma! Hugs and many prayers for you! XOXO

  3. Bethany Reply

    Oh kids do say the darndest things! What a lovely sentiment from your boy. Kids have all the answers. Here’s hoping for your rock! Best wishes. Bethany

  4. Teresa Majers Reply

    As hard as it is to accept help from those who care about you, I am glad you are willing to do so. You have raised a very special young man, Jen. He is caring and has Jesus in his heart. What more could a mom ask for in a child…

  5. Kelly Bost Reply

    Jen, thanks for the update, and I am praying hard for the “ROCK” at the Indy Phase 1 trial. What a wonderful young man Corbin is — undoubtedly he has a fantastic mom! God bless, Kelly

  6. Mary Barh Reply

    I’m hoping for Big Rocks to lob with the Indy phase I trial…Im praying for you..and Corbin…

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