This will not be an eloquent post. My brain is fried from two weeks of stress, two CyberKnife sessions, a boatload of steroids, and very little sleep. Please don’t judge my written products on this rambling!
With the disclaimer securely in place, I can now tell you that I have an update and a plan; I shall soldier on with a mediocre post intended only for disseminating this information.
I met with my primary oncologist, Dr. Roush, in a new office yesterday. It was our first appointment since October 15: the date I was dispatched to begin the LDK378 trial. We’ve talked on the phone, and I saw him in the hospital two weeks ago, but this was our return to the professional office setting.
Previously we met just two miles from my home in an older but functional professional medical building. But at some point in November, the building’s tiny elevator broke; it took so long to fix that they finally walked away from the office lease.
Yesterday it was a 40 minute drive to get to the office. But it can’t bother me too much. I’m just so glad to see my doctor again!
Dr. Roush met me in the waiting room and escorted us to the back where the nurses took over. It was nice to see some friendly faces; about half of the old crew moved to this location. After the usual measurements, blood work and intake questions, I climbed atop the exam table.
Dr. Roush walked in. I motioned him over, arms wide open for a hug. He chuckled a little, “you’ve made my day!” He looked at me and paused ever so briefly. “Don’t take this the wrong way, but you look as good now as you have since I’ve been treating you!”
I was flattered. I did lose 40 pounds on the LDK378 trial, and I certainly look like a healthier person, despite my 5 shiny new brain tumors. Given the way I’ve struggled with extra weight my entire life, I’ll be happy if you call me a “damn skinny bitch” until I’m a size zero. Just make sure you take me shopping for the snazzy clothes I’ve never been able to wear!
Now it was time to get down to business. Steroids were way above tumors on my list. It’s time to wean off the steroids. Monday was my first day cutting back, and I will be roid-free by July 17. Woohoo! My face is gross and puffy, my knees are swollen, I can barely write my name, and I’m just exhausted from not being able to sleep for more than an hour at a time. I also regained 3+ pounds just since my seizure. You know that makes me an unhappy bunny!
The best news of the visit had to do with my lungs. Thursday’s PET scan looked better now than it has since my diagnosis. LDK378 really me beat me down – lung cancer included!
Here’s the meaningful part: I can ignore my lungs for now and just focus on my brain. I’m not restarting chemotherapy (we were considering Taxotere), I don’t need to hop into the next trial, and I don’t have to uproot my family to Boston for treatment. I don’t have to make the choice (yet), and THAT’S a proverbial breath of fresh air!
If you regularly follow my blog and Twitter feed, there might be some repeats here. Again – please see the forward to this post which mentions how I’m running at a truly mediocre pace today!
My seizure was on June 16, and I went home on June 18. I had CyberKnife Robotic Radiosurgery on June 24 and 28. I’ll spare you the detail of each scan and doctor appointment which took place before the big zapping. Let me just say that I doubt there are many spectrum of light known to man that haven’t entered my brain/body in the past two weeks!
From here I will venture down one of three short paths. And from what I can glean, my odds are pretty decent for the happiest of options to follow.
My next MRI is on July 19. The best case scenario is that we see the five tumors shrinking AND the residual lesions (which Dr. Roush and I are affectionately calling “brain lint”) disappear. You see, those might be nothing or they might be the development of other tumors. It’s too soon to tell.
Improvement means no immediate intervention is needed. I would continue to go month-to-month, treatment free until an MRI or PET scan showed the need to intervene with a treatment for my lungs, brain, or something else. I could be looking forward to 3 or 4 month reprieve!
The next path is quite sobering but not unconquerable. If my “brain lint” does not disappear, I will have to take at least one month (three weekly doses) of Camptosar chemotherapy. This option is still far more attractive than whole brain radiation and one that Dr. Roush has already discussed with my newly assigned radiation oncologist. After that one month of chemotherapy, we would recheck the MRI and hope to return watchful waiting mode.
The really unhappy path is if we discover, just three weeks from now, that I have a new fully formed tumor, lots of new “lint,” or if any of the five zapped brain tumors have grown. That puts me in the express lane to whole brain radiation and probably chemo too.
It’s true that in the new ‘worst case scenario’ it becomes a real possibility that brain mets will do me in long before lung cancer has a shot. Still, I refuse to believe I’m on any sort of “timetable.” There are too many variables.
And I still have a lot of (fun) shit to do before I go anywhere!