June 16, 2020 - ...Ready For It?

I flew to Houston, during a worldwide pandemic, for my follow up with Dr. Burger. Bloodwork in April was canceled because of Covid-19. I’ve been having some toleration and side effect issues of Calquence, similar to what I had with Imbruvica. We were considering another med change, so seeing him in person was necessary. 

My CLL lab work is perfection. My physical exam is also perfect. Dr. Burger says Calquence is a world class drug for CLL, and I just began it in January. He does not want us to jump ship too soon. I’m working now with other doctors to help minimize unwanted side effects. 

Dr. Burger wants me to decrease my dose of Calquence, and see if that protocol presents with less side effects. We shall see! 🤞🏼🤞🏼🤞🏼

Side note: Calquence is currently being used in some trials to treat Covid! I thought that was pretty exciting. 

I will follow up with my local oncologist in 3 months. I will see Dr. Burger in Houston again next January, unless I need to see him before then. 🧡

Thank you to my dear friend, Julie Belz, for joining me on my trip to Houston (and my husband for holding down the fort at home!). While she couldn’t attend my appointment with me (only patients allowed at MDA due to Covid), we did get to enjoy a fabulous dinner in downtown Houston. 🥰

January 2020 - New Year, New Meds

I have returned from my visit with Dr. Burger at MD Anderson. There has been a newer drug approved by the FDA called Calquence (Acalabrutinib). This is in the same drug class as Imbruvica, that I’ve previously been on: a BTK inhibitor. It has been reported to have a lower side effect profile than Imbruvica. Since the drug has worked well, and the side effects are what have been the issue, we decided to give this a try. So we will forgo beginning Venetoclax (the next, and only drug option left at this time) and save it in our arsenal. 

Dr. Burger said he is not concerned about the amount of CLL in my marrow increasing from 30% (at initial diagnosis April 2016) to 54% (August 2019) because the latter was checked when I had been off Imbruvica and my white count was very high. This can also skew the percentage shown in the marrow. This was beyond relieving to hear. 

I was prepared for an insurance battle. Remember it took me (long!!!) 6 weeks, and a couple of appeals, to get Imbruvica initially approved. The sticker shock on these meds is truly mind blowing. But it was approved on the first round! Yay!!

Dr. Burger did not want me to have any off days with Imbruvica, before the switch to Calquence, because of the issues I had last time. So far I’ve only had some migraine-like headaches since the switch. And if that’s the worst of it, I’ll be very pleased. But it’s still early. The constant need for water and thirst is still an issue, but I was prepared for that—as it’s the same type drug. And that’s become my new normal anyway; I can deal with it!

I will get blood work checked in 1 month locally to see how things look. And the main issue will be to watch for a relief from side effects. Only time will tell. I am to go back to Houston in June, unless I need to go back sooner because of side effects. 

Thank you for your support! My family and I are very grateful.