January 17 & 31, 2023 - You’re On Your Own, Kid

First order of business—I want to give my heart felt thank you to Taylor Swift for putting out a new (and I think her very best) album! I was having trouble w continued blog title content. Thank you, T Swift! 😘

Second—I began a medication taper to come off Venetoclax mid-December 2022. It took about 6 weeks total. This was my easiest experience yet weaning off a leukemia drug, thankfully. A few minor bothersome things, but no major issues. Dr. Burger wanted me to come off the meds no matter what at the 2 year mark, since in the trials, this is when patients tend to begin showing resistance. We want to keep this medication in our arsenal for the future. 

He wanted me completely free of CLL meds for 2 weeks, then have a bone marrow biopsy (BMB) completed and a PET scan. The BMB is to show if there are any lingering cancer cells in my bone marrow. And the PET scan is to show if any active lymph nodes w CLL cells are present. 

If you’ve been w me along this almost 7 year journey, you know my first experience w a BMB was awful. It was not completed at MD Anderson. So naturally, I had a lot of fear and anxiety leading up to this procedure. I cannot explain the night and day difference between my experience at West Clinic in Memphis vs. my experience at MD Anderson. It was SO MUCH BETTER and well done.  Still, it’s not a pleasant procedure, and I’m fine not doing that again for a while, or ever again. 

For the PET scan you are given an IV injection and told to not be on your phone—to relax for one hour to let the solution injected go and “find” any active cancer cells. Then after one hour, the actual scan is exactly like a CT scan. That was my first experience w nuclear medicine! 

I completed all of the above in Houston January 17, with my dear friend, Beth (pictured), who was an incredible Uber driver (😂), hostess, nurse and friend. I am so grateful she was w me. Jack was at home holding the fort down w Jackson—being his blood sugar ninja—and managing all things household, dog and school related everything. Beth and I got to have a great time, between appts, w some incredible meals and even got in a little shopping. I am grateful for friends who are family—who show up, take time away from their own jobs, families and life, for the not-so-fun stuff I needed help with! Forever thankful for my tribe. 

Dr. Burger called me on January 31 to let me know the results of all testing. When I answered he asked, “have you seen your test results?” and I said, “I have; they look good to me (?). But I have been waiting to hear it from you. I didn’t want to get too excited.” He said, “it’s not only good news, it’s really good news. No detectable cancer cells in your marrow or scans. You have reached uMRD (undetectable minimal residual disease status)!”

OMGGGGGGG! 

He reiterated that it’s a good thing we came off the meds now, because I would eventually become resistant. So we still have it if/when I do need it again. This means I *should* get several years off meds. I’m having a hard time wrapping my mind around that. I haven’t been treatment free , minus one short 15 month hiatus, in almost 7 years. 

Lastly: the plan—I do blood work in Memphis in 6 months; I will see him in 1 year (I’ve never gone that long not visiting Houston!) And of course he said, “if you begin to see nodes coming back or not feeling well, you know how to reach us.”

I’m really happy for this WIN and for my second favorite word after “cure”, REMISSION 🙌🏼

My CLL is not cured. There is no cure, yet. But for now I’m CLL med FREE w ZERO active cancer in my body. So as T Swift says, “you’re on your own, kid.” And I’d *really* like to stay on my own (read: no treatment!) for a while 🫶🏼

August 16, 2022 - update from last post

They called me from MDA with my pending results. My blood test showed MRD- 

whoop! (minimal residual disease negative) 

Meaning it was negative for detection of any CLL cells in my blood to the 0.01% degree 🙌🏼🎉

PET scan and and bone marrow biopsy (😩) scheduled in January. They want me to taper down on meds beginning 3 weeks before the BMB, and no meds for 1 week prior to the BMB. 

This is GREAT news that the meds are working in the best way! Hoping it looks that way in the marrow, too 🤞🏼

August 9, 2022 - Wildest Dreams

Alright! I went to Houston for a follow up August 9. I was supposed to go in May, but I had covid—again, and I had to re-schedule. Dr. Burger spends all summer in Germany. So August was the first available appointment. 

He is testing the level of disease in my blood (MRD status - minimal residual disease). I won’t have results for a few days. All other labs look great. If it’s 0.00 in the blood, he wants me to have a PET scan (to see if there are any active nodes from head to toe) and repeat bone marrow biopsy 😫 (bc it takes longer for leukemia cells to get out of the marrow vs out of the blood). Both tests would be done in Houston. He won’t take me off the meds without those baselines to see how much is in my body/how affective the meds are. So if blood work is > zero, continue meds to the 2 year mark (January) and likely take me off either way then bc resistance can build after two years (per trials so far). He would still do tests then anyway to have the data on how it worked for me. He expects 2-3 years of no meds after this, but mine tends to be aggressive so no way to know…

So if my bloodwork is 0.00 and the marrow is still reading positive for leukemia cells, then I would stay on meds for another 6 months. 

I have decided, regardless of this week’s bloodwork, to continue on the meds until January. Let’s complete a full 2 years. I do NOT want any more bone marrow biopsies than I have to have. In fact, I want not one ever again—if I’m being honest. Imagine a drill—a screw gun—going into your hip bone. I’m a strong girl. But this one is too much. TOO MUCH. 

Thank you for staying the course on my slow and steady, yet a little scary, marathon of CLL. 

Getting off all meds would complete my wildest dreams. Even for a moment. I have not been off of CLL meds in over 6 years. 

🤍🤍🤍

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. 

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 

January 4, 2020 - New Year, New Meds... AGAIN!

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 

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. 🥰