April 15, 2021 - Happy in Houston

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 

December 5, 2017 - I get by with a little help from my friends

I had my bloodwork and follow up visit at MD Anderson Tuesday, December 5. I was so fortunate to have my dear friend, Tracy, join me. She sat with me during two days of chemo in the beginning, and she’s been an indispensable mentor, doctor, and friend since day one. 

I’ve been feeling amazing, so I was hoping this visit would go well. But you never know....

The only side effects of the Imbruvica I deal with daily are EXTREME thirst/dry mouth [I drink more water daily, and all thru the night, than I ever thought was possible] and bothersome and constant acne [hello preteen years!]. Disclaimer: these are definitely minor considering the entire situation, so I will deal, and I will be fine! 

While I’ve seen my dermatologist about topicals and/or oral meds to help, she wasn’t comfortable prescribing anything (other than a topical) until I clear it with my MD Anderson team. Upon my visit Dr. Burger said that instead of adding more meds, he recommended that we decrease my Imbruvica dose (which is at the highest) to a lower dose. Naturally this freaked me out - thinking my lymph nodes would immediately swell and CLL would again become aggressive - but he assured me he did not think this would happen. 

Imbruvica works by blocking an enzyme called Bruton’s tyrosine kinase (Btk), which is found in B lymphocytes [read: BAD lymphocytes]. Btk promotes survival of B lymphocytes and their migration to the organs where these cells normally divide. Dr. Burger said after ~6 months on Imbruvica, I probably have very little Btk in my bloodstream, so decreasing the amount of medication should be sufficient. He was actually quite confident in this. And he’s a genius, so I will trust him. 

I have now decreased my dosage, and I will watch for any changes that may show aggressive disease and/or any less side effects. Obviously, I hope for the latter. If all goes well, I will not go back to MD Anderson for 6 months. 

Thank you, as always, for supporting me and loving me. If you are reading this, have a newly diagnosed cancer, and are debating a second opinion, please think on it no more. This second opinion, at a world-renowned cancer research center, has changed my life. No more unnecessary chemo, yet I have gained an amazing NON-chemo drug that is keeping my CLL controlled. We are very hopeful it will continue to do this for years and years. 

🍷Cheers to continued CONTROL!🍷

[Dr. Burger below, with his favorite patient 😉]

August 3, 2017 - Imbruvica is boss

This was such a relieving visit to MD Anderson! Since I began treatment with Imbruvica June 22, I have noticed significant decrease in all of my lymph nodes. I have felt great (minus a few weird, yet tolerable side effects), and I have felt such an incredible sense of relief having all the nodes down. 

I had a follow up with Dr. Burger to see how my bloodwork looks since beginning Imbruvica. It is remarkable! Yay!! 

I will continue on Imbruvica for as long as possible. Sometimes after a couple of years Imbruvica can start to not work anymore. Of course we hope this isn't the case. If that happens, they told me about a new trial completed at MD Anderson that they just completed showing that adding Venetoclax along with Imbruvica is showing remission. Imbruvica alone usually doesn't cause "remission", but control. Since all my nodes are down and my lab work looks good, he does not recommend adding anything at this point. But it's an option in the future hopefully. It may take a year or so for the results of the Imbruvica + Venetoclax study to be released anyway. So I'm certain insurance (looking at you, Humana) wouldn't consider covering it until well after that time anyway. They were such a pain getting Imbruvica covered, which has already been approved for front line CLL treatment. 

I got to spend a fun evening in Houston after my appointment with a girlfriend... doing what I do best: eating amazing food, shopping til we drop, Pure Barre-ing, and inbibing in a plethora of wine! 

Thank you for your continued prayers, love, and support!