Hello 2021! I am SO glad to see you.
An update on me since my last post in June 2020...
Shortly after my last update, I did contract COVID-19. I tested positive June 29. I was pretty sick in bed for a full 2 weeks. I fought it at home with no spleen, leukemia, type A+ blood (supposed to be less favorable) with Tylenol, Aspirin and Pepcid. {YAY!} I still have antibodies for COVID-19 as of my most recent test December 1st 🙏🏼🙏🏼🙏🏼.
The worst news of 2020 for us personally was that our son, Jackson, was diagnosed with Type 1 Diabetes on August 6 after months of puzzling, yet not clear issues, and an ICU stay in DKA (diabetic ketoacidosis). This shattered our world. Luckily, we caught the DKA early, and we only had to stay in the hospital for one night. I have been full speed ahead with getting my T1D team for Jackson together, the best supplies needed, the best doctors, the best help needed, managing T1D day, night, at school, etc. So, naturally, this overtook my world for a hot second.
However, once the dust settled some with Jackson, I couldn’t ignore my own health any longer. I flew to Houston November 12, 2020 for an appointment with Dr. Burger at MD Anderson (MDA). Side effects have been just too much for me on my current medication, Calquence, and I need a solution.
I’m beginning Venetoclax today, January 4, 2021. This drug usually requires a hospitalization to begin due to the risk of Tumor Lysis Syndrome (TLS); however, since my CLL is controlled, my risk for TLS is very low. I began Allopurinol January 1 to help minimize the risks as well. I will continue this for now.
I will do a 5 week ramp up dosing on Venetoclax. I will begin my dose, get bloodwork the next day, and do the same x 5 weeks as I ramp up to the desired therapeutic dose. I will be doing my weekly monitoring and blood work in Memphis with the wonderful Dr. Salil Goorha at Baptist Oncology. He will work directly with Dr. Burger at MDA on my progress. I will continue to take Calquence daily until I reach the therapeutic dose of Venetoclax. I will then taper off Calquence.
I am somewhat running out of “options” medically for my type of CLL. That worries me, naturally. I really hope this medicine is successful at controlling my leukemia, while also giving me minimal side effects—or at least ones I can live with. I also hope and pray for even more and more options for CLL, and again for a CURE.
Thank you for your ever-outpouring of love and support.
#kickcancersass
xoxo-
Heidi
