I started off my birthday this morning in the most bad-a$$ way possible - by getting kicked out of my clinical trial. Yes, that’s right, early this morning, as I waited to get my blood drawn, my MRI results were released to my Patient Portal, and with a pleasant little “ding” I discovered that my fancy new drug has not been living up to the hype, and the cancer has progressed in my brain. I’m still kinda hazy on the details, as the report was uncharacteristically vague; no actual measurements or anything, almost a poetic take on MRI reading. But, nonetheless, I am kicked off the trial, the remaining pills were confiscated, and I was sent on my way. No plan, just set adrift.
I have an appointment with my old oncologist tomorrow; they initially said her next available appointment was in APRIL, so I used my bad-a$$ Birthday Powers and helped them find one much sooner.
I sent some bad-a$$ emails to some wonderful ROS1 experts, who sent lighting fast replies (before I even got called in to see my trial doctor) with thoughts for potential next steps and caveats. I also emailed my rad onc who lived up to his title and agreed to review my MRI and help me come up with a bad-a$$ plan. I sent bad-a$$ emails and left righteous voicemails to the Lorlatinib trial sites in Detroit so I can get the bad-a$$ ball rolling on my potential next treatment plan.
I was not bad-a$$ enough to select “Death By Chocolate” for my birthday cake. I thought “Chocolate Spring” sounded more auspicious.
4 comments:
Keep that attitude going! Hard to be a game of Skip-Bo with the family.
Hi Tori:
Been awhile since I wrote. Have been following your energetic approach to beat this thing.
Sorry to hear about this bump. Glad you are looking at Loratinib. Have heard both good and bad but had not been following that drug closely. ((HUGS)) and best to you. Happy 42! I was diagnosed 42 and will be 45 this year. So will you!
What a crummy way to start your birthday. Your strength, attitude and Courage, continue to inspire me. You are bad a$$ and I know you'll find a way to start a new and healing regime to rid yourself of the cancer. I Just celebrated my 14 year cancer free anniversary. Never mind the doctor's said I had a 20% chance of making 5 years. We shall overcome!!!!!!!!
Sincerely,
Linda Rogers
Wow, didn't know that could happen just like that. You'll get them all straightened out and develop your own plan for the onc to approve if that's what it takes. Your Bad-A$$ attitude is mighty impressive. Keeping you in my thoughts.
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