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 🫶🏼

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. 🥰

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. 

September 5, 2019 - Call It What You Want

I received all my test results yesterday from my August 22-23 appointments. There was nothing remarkable found from all the bloodwork—meaning I didn’t have some crazy virus or something that caused all the immediate painful node swelling. {I had a feeling this was the case, and it’s good news!!}

The most interesting (read: disappointing) thing found was that there is 54% CLL in my bone marrow. At diagnosis, I had 30%. I was heartbroken to find that after over 2 years of treatment, the amount of CLL in my marrow has increased. 

However, I did learn that Imbruvica is good at maintaining the disease. It is not great at driving it out of the marrow. 

I will go back to Houston November 7 to hopefully discuss switching meds... to one that can *possibly* achieve a real remission. And I’m hoping for a careful, methodical plan for getting me off Imbruvica {unlike last time}. I’d very much like to avoid that situation again entirely. 🤞🏼🤞🏼🤞🏼

Here’s a recent Pure Barre headshot to commemorate that I’m feeling 100% again!!! And I’ll be back on the mic this week teaching class. I can’t wait!

So as T. Swift would say, “call it what you want.” I don’t know if all of this is good, if all of this is bad, or if it’s in between. I think it’s a mixture of all. 

#kickcancersa**

August 22-23, 2019 - You {lymph nodes} Need To Calm Down

While many of us truly *hate* Facebook, it is such a God-send when you find yourself diagnosed with cancer. I am so thankful for the community of people I have met worldwide who have CLL. Commiserating with those who know what you are going thru has been my life line. This is Aimee. She is in a CLL group on Facebook I help to admin. It is for those who are diagnosed under 50 years old. She was also at MD Anderson the same day I was. It was the highlight of my Houston visit: to meet Aimee in person. Keep fighting, Aimee!! We got this!!

Update on my appointments: my white blood cell count and lymphocyte counts were high (actually, triple what they were at my last visit on 8/6). This can be related to CLL, an infection, or both. 

All the swollen nodes (I gained over 5 lbs in swelling), have been going down since restarting Imbruvica. Except I had 3 very painful nodes in my neck that were not budging. The pain was constant, and I could not get any relief. I gave 14 vials of blood over 2 days and a urine sample for tests. The results are all still pending. After I saw my CLL doctor, I then saw an Infectious Disease doctor. He didn’t have many ideas as to why those 3 nodes were still swollen and so painful. Again, we are all waiting on the blood tests. In the meantime, ID wanted me to try a round of antibiotics. Within 12 hours of my first dose, I finally, for the first time in over 8 days, had some relief to the constant pain!! My lab work didn’t look like anything bacterial was going on, but for whatever reason, the antibiotics are helping. 

I’m now home. The pain is getting less and less each day. The total body swelling is going down, and I’m beginning to feel more like my usual self. I have had episodes of overwhelming, out of nowhere lethargy. But it’s getting better each day. I don’t slow down easily so this has been hard for me. But I’m trying! {cue Taylor Swift: You Need To Calm Down}

So for now, I’m still waiting to see if the blood work shows anything remarkable. I’m letting the antibiotics do their thing. I’ll go back to Houston in November to possibly switch to a different med. So there are still many unknowns, but I’ll tell you what I do know: I won’t be suddenly stopping Imbruvica again. Nope. Nope. Nope. 

Hoping to be back to 100% soon! I’m almost there :)

August 6, 2019 - We Are Never Ever Getting Back Together {well, maybe we will}

I had my 6 month follow up with Dr. Burger at MD Anderson in Houston this week. Thank you to my sweet mom for joining me!!

Things are fine. Things are not fine. But everything is fine. Make sense? No? Welcome to my brain. 

So my lab work is perfect (it’s never been all that remarkable anyway). The main concern with my type of CLL is aggressively growing lymph nodes. I started Imbruvica a little over 2 years ago. It has been super effective at driving the CLL cells out of my nodes and keeping my CLL extremely controlled! However, it has not been without side effects. I’ve been able to deal with them all, until now. For me, Imbruvica has been extremely hard on my hair, skin, nails, and maintaining adequate hydration. But I’ve hit a point where my body is having a hard time fighting off certain types of infections and showing signs of resistance with meds to clear the infections. As I thought all along, this can be a side effect of Imbruvica. 

Dr. Burger wants me to stop treatment for now and give my body a break. I’m terrified. I’m excited (can’t wait to eat things with grapefruit again {the latuga salad at Bari in midtown and I have some rekindling to do!}). I’m ok. I’m not ok. I’m overwhelmed with stopping. I will be obsessively monitoring for nodes to return. We are unsure how fast or slow that may happen. But... it will happen. 

Dr. Burger strongly feels someone at my age (young! for a chronic cancer) should not remain on treatment forever and constantly. Because then there is risk of my CLL becoming resistant to the treatment options. 

So—Imbruvica and I have broken up. We are never ever getting back together, or maybe we will. 

Plan: wait, watch, (obsess? all the wine?) yes, yes, yes & yes. Go back to Houston in 3 months for blood work. We will also test for MRD which means Minimal Residual Disease. This is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after treatment when the patient is in remission. Ideally it will remain MRD-.  

If (read: when) nodes begin coming back, I will begin a different drug called Venetoclax. This drug was not available to me 2 years ago. There is a risk of tumor lysis syndrome with this medication, so it would be a low dose to start and increase each week for 6 weeks with weekly blood draws. That will either happen in Houston, with a local hematologist in Memphis, or with my primary care doctor. But—I will figure out those details when I need to. And should that med not work, we can still always go back to Imbruvica. 

How am I doing? Sometimes I am completely overwhelmed that I have to manage this disease. Other times I’m so thankful it’s not worse. Yesterday was one of those overwhelming days. It was a clear reminder that change is imminent, meds are always presenting with new and unfun side effects, and this is definitely a long journey—not a short story. 

So I’m going to really focus on the positives here. I will try very hard not to obsess on the negatives. 

Here we go! I officially stopped Imbruvica today. 🤞🏼

January 8, 2019 - Thank u, next

I had a great follow up January 8, 2019 in Houston with my MD Anderson care team. 

Since my last visit and blog post (June 2018) things have been pretty uneventful (a good thing!) with my CLL. I only had one hiccup in December that scared us. 

In early December, I had LASIK eye surgery. I had to hold my Imbruvica (CLL treatment meds) for 7 days total. 3 days after my LASIK surgery, I woke up at 3:00am with very painful, very swollen lymph nodes all over: my neck, collarbone, underarms, groin, etc. You could visibly see them protruding off of my body. I woke my husband up next to me so very scared. CLL nodes have never swollen that quickly nor have they been painful. I talked with my primary care doctor and my oncology team in Houston many times over the course of a week following this. Blood work appeared normal. Mono tests were negative. But the Epstein Bar Virus (EBV) labs came back VERY high. I had no idea what this was, but have since learned very much—that about 90% of adults have been exposed to this virus at some point in their life. It’s mostly dormant, but in my case it was very much active. Stress can activate this virus. This is the virus that normally causes Mono, but my mono test was negative. Anyway, within a few days all the nodes went back to normal and the pain diminished. I began a daily anti-viral medication to hopefully keep EBV controlled. I also am seeing an infectious disease specialist next week for further recommendations, if any. 

So January 8 in Houston, my labs were great CLL-wise! Dr. Burger wants me to continue the 280mg dose of Imbruvica. Last June he mentioned possibly doing a smaller dose or completely stopping it for a bit. However, he stated that they are not seeing that the lower dose of 140mg is keeping CLL controlled in most subjects. And as far as stopping it altogether, he said he is seeing CLL symptoms come back quickly and more aggressively. Along with those 2 factors + the EBV episode, he wants me to continue the current regimen. Um, yes please! I concur!

Thank you to my dear friend, Whitney, for joining me on my visit. We had a great time in Houston celebrating my great report. I go back to Houston in August for my next follow up. 

Thank you for the love and support. And yes, I now see 20/20!

xoxo~Heidi 

June 5, 2018 - Today was a good day

What a great day! I had a follow up with Dr. Burger at MD Anderson in Houston, Texas on June 5. All my labs are great—and even better than 6 months ago. My CLL is VERY controlled right now. He said I have minimal leukemia cells in my body (according to my labs). This means: the Imbruvica is working! I have done well on my decreased dose of Imbruvica (from 3 pills daily to 2). He doesn’t want to see me again until January 2019 [🙌🏻]!! At that point he said our next step is: Do we decrease the dose to 1 pill? Do we consider stopping the medication completely to give my body a break? He said there is not much research out there telling us exactly what plan of action to take, as the medication has not been around long enough to be studied long term. He did say there is always a chance that I will develop a resistance to the medication—which we’d like to avoid. Of course it COMPLETELY freaks me out to think about having no medication, but he’s the genius—I’ll do what he says. And I’m certain my body could use a break from it. For now, I’ll keep on keepin’ on. 

Thank you to my dear friend, Connie, for meeting me in Houston for this follow up appointment. It means more than I can express for anyone to stop what they have going on to attend an appointment with me. Even though I had a feeling this appointment would go well, I’ve definitely been surprised in the past with hearing news I didn’t want to. Thank you to my wonderful husband, Jack, for holding down the fort at home. My family and friend support is invaluable! 

MD Anderson was celebrating Cancer Survivors Week while we were there. We had a lot of laughs in the photo booth above, followed by a fun day and night out in Houston [that involved incredible food—hey, we like to eat!].

Thank you for supporting me, praying for me, and loving me through this journey. Have a wonderful summer! 

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 😉]