Putting my Faith in the Sparrow

I finally received an appointment with Sparrow Hospital to get the new AZD9291 drug in Lansing on Friday, October 2.  And I am very excited to learn that I won’t spend more than a couple of hours at the hospital.  No scans, no blood work, no tests.  Just some consultations with the oncologist and nurse.  I can go to and from Lansing in a day!  Good thing, since it is Homecoming weekend for Michigan State University that weekend and there are no hotel rooms available!

I will have to have blood tests done near home each week and have the results faxed to Sparrow and then go back to get a refill three weeks after the first one.  After that, it would be one trip every six weeks or whenever the FDA approves the drug for general use.  When that happens, I will be able to fill the prescription through Rush and right to home. 

Let’s hope the good news keeps coming!  And let the healing begin!

DonnaLee

Slow Down ...and Wait!

It was a very long day today.  I left the house at 7:35 a.m. today and got home from the hospital at 6:15 p.m.  A lot of that time was spent in waiting rooms.  It seems Rush may not be the best name for that hospital because it certainly doesn’t seem like they are in any hurry to get things done.

Dr. Bonomi is not feeling an urgency to switch to the new treatment.  He is framing the situation that today started a new 3-week cycle of cancer treatment.  Dr. Bonomi will work with the doctor in Lansing to figure out how to taper off the Tarceva  I’m still taking once a week and add in the ASD9291 over the next 3-week cycle.  After my first visit there, I will have to come back after another 3 weeks.  After the first two visits, I can then go every 6 weeks from that point on. 

The Lansing hospital wanted an EKG for my heart, so I stayed even longer today to get that over with.  This drug better have the pay off  I’ve been hearing about for all this hassle!

The News We've Been Waiting For

Hi there,

At last!  I am so relieved to finally have some good news to report.

The word came down in an email from my oncology nurse this afternoon.  My blood work DNA confirmed what I’ve always suspected:  I am a mutant twice over.  I not only have the EGFR mutation, but also the T790M mutation.  This makes me eligible for expanded access to the AZD9291 drug that is getting all the good reports for great results with minimal side effects.

The rule for expanded access is that, until it gets FDA approval, you have to go to one of ten identified clinics that dispense the AZD9291 drug.  The closest one is in Lansing, Michigan.  I don’t know when I will start to go there, how long I will have to stay there, or how frequently I will have to go there.  I hope to have more details when I have my appointment at Rush this Monday, September 14.  I’ll share the updates soon after I get them.

A special "thank you" to other lung cancer survivors I have come across through various programs and events I've attended.  They have followed my blog, seen my struggles, and offered their own experience, research and knowledge to help guide me to this hopeful next step.

Thanks to all of you for your love, concern and support.  I never realized that keeping this blog was going to be so helpful to me in so many ways.