My Appointment
Lindsey and I met with Dr. Cripe at 9:30 this morning.  We asked many questions and he gave us up front answers.  The plan we are moving forward with is to start on Blinatumomab as soon as possible.  This will hopefully occur tomorrow, but may occur later in the week.  Dr. Cripe is reaching out to one of the CAR T investigators at Penn to see if Blinatumomab impacts their therapy at all (he doesn’t think that it does).  He was also waiting to hear back from one colleague about any trials that incorporate chemo along with Blinatumomab.  There’s one other hold up, but I’ll save that for its own section 😉

The Blinatumomab Plan
Once I’m admitted, we will begin the Blinatumomab (blin-a-TOOM-oh-mab).  It is a continuous IV, meaning the drug is constantly being given to me through my PICC.  If there is an issue and the IV stops for some reason, I have to be observed for 4 hours when the med is started back up.  I will receive 9mcg/day for days 1-7.  This is a lower dose to make sure my body doesn’t freak out.  On day 8, the dose will increase to 28mcg/day.  This is the dose I will receive for the remainder of my treatment.  I will be on the med for 28 days and then I will have 14 days off.  I will be in the hospital for days 1-9 so that they can observe my reaction to the initial dose and the increased doses.  If all goes well, I will be discharged on day 10.

Continue reading We’ve Got a Plan Stan

We are all done with my appointment.  We asked a lot of questions, which I’ll get into tonight. The cliff notes version is that we are going to proceed with Blinatunomab.  I will be admitted either tomorrow or Wednesday.  Dr Cripe is making a few more calls today based on our questions.  Also Anthem and IU Health need to work out some differences before we officially proceed 😉

A more detailed update will be coming tonight.  

What Did People Do Before the Internet?
I’ve spent a lot of today online researching relapsed and refractory ALL.  Of course I’ve been looking into Blinatumomab.  I’ve also been looking into CAR T therapy.  CAR T Therapy is where they take out some of your own T cells, modify them and then put them back in you to fight the cancer.  I’ll have a lot of questions for Dr. Cripe on Blinatumomab vs CAR T.

Blinatumomab
I’m still not sure I’m always spelling that right.  Last night I was on my iPhone in bed and couldn’t remember the name of the drug.  I ended up researching ibritumomab for a bit before I realized the error of my ways.  From what I’ve found out today, Blinatumomab is given via constant IV.  I mistakenly thought that I would get a dose for a few hours and then be unhooked like I was with Chemo.  This drug is given 24/7 for 28 days.  That should make for some interesting adjustments in life.  Looking at the side effects, I will most likely experience flu like symptoms (Fever, Headache, Nausea).  Hopefully those can be managed well with medications.  From what I’ve read the phase 2 clinical trials achieved a remission in 40% of patients.

Continue reading Research Research Research