October 19, 2021 - I Have No Clever Title This Time 🙃

I had a follow up with Dr. Burger and his team at MD Anderson. All was good! My red blood cell counts (Hbg, Hct) have dropped more than he’s comfortable with, but it’s to be expected on this medication. He wants me to go from 4 pills of Venetoclax a day to 3 pills a day. I will  bloodwork done in Memphis in the winter and come back to see Houston in April. He wants to run a MRD status (minimal residual disease) then which will tell how much disease is in my bone marrow (without a bone marrow biopsy 🙌🏼)… at my last appointment he mentioned I could maybe get off of the meds completely in a year, but now he’s saying we can discuss it after 2 years. This medicine only has data for 3-4 years—and all trials have people coming off no earlier than 2 years. Unlike Imbruvica or Calquence, my previous two meds, which have 11 years of data (and they still have a lot to learn about those)… He did say since I tend to have more aggressive disease😑, he would project I would maybe only get 2 years or so off all meds. But that’s better than nothing. And who knows what else is coming down the pipeline. 

That’s it! Thank you for your continued support and love. 

November 6, 2017 - Imbruvica is my BFF

I realized this past week many of you keep up with me here alone, so I am sorry I haven’t updated in a while. But no news is good news, right? 

RIGHT! 

I know of and hear of a time when Imbruvica stops working for CLL patients. Again, it’s my dark cloud that follows me... “when will it stop working?” as I frantically check my lymph nodes for unwanted growth. It’s paralyzing at times, yet it’s also relieving at times - because

The. 

Meds. 

Are. 

Working. 

I feel better than ever. I have more energy than I can remember having. My immune system is better. I used to have a sinus infection [like, the real deal... oral antibiotics coupled with steroids and an antibiotic shot... errrytime] about every 4-12 weeks for as long as I can remember. Since Imbruvica, I’ve had none. {***knock on wood***}

I know, and very much realize, there is a day this medicine may stop doing its job. But for today, I feel good. My CLL is controlled. Can I ask for anything more? No, I cannot. 

I go back to MD Anderson December 5. I will post another update after my visit. 

Once again, thank you for loving and supporting me! 

A special shout out to my CLL buddies. I am so thankful to have found you... and that I’m not alone with this cancer as a “young” one —> David Spivak and Sabrina Foxworthy (among others!), you are the greatest lifeline!