Okay, folks. The news is NOT GOOD. Let me just start with that spoiler and not sugar coat it. We did not get news we were all hoping and praying for. We're going to do a pivot and keep trying. We are not giving up. The goal is still cure and cure is still possible. But the news is bad.
Information gained from Bone Marrow Biopsy
1. So when they did the bone marrow biopsy they took out a rectangle of bone marrow. They were measuring how many cells were in that rectangle and what type of cells. In a normal healthy person my age, there should be about 60% cells. In a chemo patient who has just completed the 7+3 regimen I did, we were hoping and looking for less than 5% cells. I had 70% cells. Too many. And to boot - of those 70% cells, 90% are leukemia cells.
So here's the takeaway: THIS ROUND OF CHEMO DID NOT WORK. We will never know why; it just didn't work.
2. We also got the chromosomal/genetic abnormality typing that we were missing. This will mean nothing to most of you, but for the scientists out there reading it's a translocation 6;11. When we think about AML being divided into 3 categories "best outcomes," "intermediate outcomes," "poor outcomes," this one puts me in "poor outcomes." So, it's not what we wanted, but it doesn't change: the goal is still cure and cure is still possible.
So, we pivot! This round didn't work and we need to get to Goal 1: Remission. So, we're starting a whole new 2 week chemo treatment plan TODAY! This is gonna get a little medical-wonky so it's for the nerds out there!
The new chemo regimen is called FLAG-Ida + Ven. Here's a list of all those drugs:
FL=fludarabine (IV, once a day on days 2-6)
A=AraC (also known as cytarabine) - Any A+ students will recognize that this one was in the first regimen. It's the "backbone" of this treatment and doses are way way higher than the first go round. This will be given IV, once a day, days 2-6)
G=Growth Factor for white blood cells (Zarxio) IV, once a day, days 1-7
Ida=Idarubicin (this is in the same family as daunorubicin from the first go round, but slightly different. We'll hope it works better). Days 4-5 IV
+Ven= Venetoclax (oral med, once a day, days D1-14)
If you skimmed all that start reading again because I'm going to talk some English. This is an extremely aggressive treatment plan. It is the MOST aggressive thing out there. We are grateful that I am young and otherwise healthy and I can handle this slurry because it's a LOT.
The potential side effects are similar. We'll work hard to control nausea no matter what. There is likely to still be: fatigue, weakness, low blood counts, loss of appetite, need for lots of blood products, and probably more of these neutropenic fevers (forgot to mention I've been fevering again since last night.....low grade this time. We're running cultures. This is just what's gonna happen). Possible mouth sores. Plus a handful of rare scary ones we aren't going to mention.
So, we're marking TODAY, JUNE 16 as DAY ONE of Induction Phase Chemo-B.
We also know from these results that after we get to Goal 1: Remission, we will definitely need a bone marrow transplant. So, Goal 1: Remission, Goal 2: Bone Marrow Transplant. The timeline is squishy of course, but maybe late October, early November for that. The best donors are under 40 so they've already alerted the transplant team and they'll start doing what the need to do to find a match when we get there. The goal is still cure and cure is still possible.
So, I asked for some prognostic statistics about all this info. The genetic/chromosomal abnormality Translocation 6;11 that I mentioned above still has a 40-50% chance of cure (with bone marrow transplant). The Hardys have stared down worse statistics before and come up winning.
And the chemo regimen that I'm starting has been studied at MD Anderson Cancer Center in Texas and in patients who were refractory to the 1st round (meaning the 7+3 didn't work, like with me), they saw 69% of patients get to remission with the FLAG-Ida +Ven.
So there is some hope on the horizon and we will cling to it. The goal is still cure and cure is still possible.
I will be here at the Cancer Center for at least four more weeks. It will be two weeks of this chemo and then approximately two weeks of letting my counts recover so I can go home safely. That's mid-July at least and later than I was hoping for, but I will put my big girl pants on. We gotta do whatever we gotta do to get to Goal 1: Remission. In three more days, my COVID protocol will end and I'm hoping that will feel like a game changer. I've been promised a move to a big corner room that the nurses make sound like a Penthouse suite. And I can walk the halls with my pole and go to Recreation therapy and just experience a bit more freedom.
All we can do is pick ourselves up, pivot and take the next small step towards the goal. I'm grateful to have you all alongside me, cheering me on. It helps me keep a positive attitude even on days when the news is undeniably bad.
Let's beat this thing. Go for Cure.
P.S. If you're 18-40 and want to be added to the Bone Marrow Registry you can click that link. You may not match with me, but you might match with someone else who needs bone marrow, too.