MD Anderson has a pretty strict “no visitor” policy since the pandemic began, meaning no one can attend your appointment with you. So can I tell you how exciting it was for my CLL friend, Aimee, to have her appointment the same day I did? She even snuck me back (past the staff-only access doors) to be with her during her appointment. Dr. Burger just laughed at us being such rebels. It made a very long day much more fun. {We’ve both had covid, I’m fully vaxed and unmasking was fine with us, so we will not be accepting judgement from this picture 🙃}
My appointment went really well! I landed super early in Houston and went directly to Tiny’s No.5 for breakfast. It was amaze! Then I met up with Aimee after I arrived at MDA and did my blood work.
I’ve been on Venetoclax since January. I fully tapered off Calquence mid February. Reactions during that process were fatigue and oddly my lips swelled up one day?! It was strange but went away. After 1 full week off calquence, I did have a lot of total body node swelling come back. It was NOTHING like before when I’ve stopped Imbruvica or Calquence cold turkey. I didn’t feel right for a day, nodes were very tender, and I just took it easy and laid down. I didn’t need steroids as it did naturally calm down after 2 days.
I was featured in Cancer Health in March where I discuss my unpleasant side effects with Calquence and the reason for the med change.
https://www.cancerhealth.com/magazine/cancer-health-spring-2021
^there is the link if you’d like to read it.
Ok, back to the appointment... Labs are perfect. Venetoclax can actually get you to MRD- (which means minimal residual disease negative: no detectable disease). He said there are trials going on right now of people who stop Venetoclax after 1 year and those who are going to stay on it no matter what MRD status shows. He said he’d like to see if I can come off of it in a year. But he wants to see more data from these studies going on first. He said it would require a bone marrow biopsy to see—so if we decide not to come off of it, then no need to go through that.
We’d both love to see me have a med break, but we will just see as my nodes have been very reactive doing that before.
He is blown away I still have COVID antibodies from my infection June 2020. I’ve had them checked every 3 months since my covid diagnosis. He said, “technically, you should not have produced antibodies at all. This shows us your immune system is stronger than it is thought to be in someone w CLL” so that’s exciting!
I will follow up w Dr. Goorha in Memphis in 3-4 months for labs, and go back to Houston in 6 months.
This was overall one of my best appointments ever! I finished the day with an early dinner in downtown Houston at Potente with a plate of caviar all to myself. It was a very long day, but I was able to fly back to Memphis that evening.
Now I’ll go back to focusing on Jackson, managing T1D and his new Tandem Tslim insulin pump, which is a game changer. We are thankful for the advances Type 1 Diabetes has seen, but it’s a new challenge every single day. We donate to https://www.jdrf.org/ monthly, in hopes for a cure. If you are looking for a charity/cause to donate to, please consider this one. I can handle CLL, but I so wish my child didn’t have to handle Type 1 Diabetes.
“Today was a good day.” -Ice Cube
❤️,
Heidi
CEO of MCGA (Making Cancer Great Again)
Aimee Hulett, Dr. Jan Burger, me
