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 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. 

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 😉]

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! 

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! 

June 20, 2017 - Plan ➡️ change gears

 

Well, it's been an interesting/exhausting/emotional/anxiety-ridden month since I posted last. But I can tell you today, I finally have some relief. 

To be in the research study I mentioned in my last post, May 23, my insurance, Humana, needed to cover all bloodwork, CT scans, bone marrow biopsies, and one drug: Rituxin immunotherapy infusions. In this randomized study you may or may not get the Rituxin infusions; you find out when you begin. So all approval needs to happen prior to beginning the study. Everyone in the study receives Imbruvica pills as well. The major benefit of this pill is that the data behind it has incredible results of putting CLL into remission, it's safe to take for many years, and it has none of the ill-side effects of chemotherapy. However, Imbruvica can cost up to $13,000 per monthly supply before insurance. In this study, you receive it 🆓 for 5 years. 

We had plans to begin June 6, but 4 days before that, we found out my insurance was denying to cover Rituxin, should I need it. They also stated I didn't need the Imbruvica either. 

Yeah... #thankshumana

My doctors at MD Anderson worked on a formal appeal. So every day I was waiting for the call saying, "Book your flight. The study is ready to go." So you can imagine all the anxiety my husband and I were dealing with. It was all very emotionally and mentally exhausting. 

Last week I found out that the appeal came back and they denied yet again the Rituxin, but they have now approved the Imbruvica, should I get it outside of the trial. 

So many questions. So much confusion. 

✈️Back to Houston. 

My husband and I met with the team at MD Anderson Tuesday, June 20. Dr Burger told me when an insurance company is refusing for things with a trial, it can be difficult to fight. 

He said if he were me he would take Imbruvica solo, outside of the trial by prescription. Problem➡️we priced it with insurance and it would be $3,000 per month. But MD Anderson told me they can work with specialty pharmacies that will be able to get the price down. I was extremely confused about how that can work, but they assured us it will. 

I then got a call from a speciality pharmacy (June 21) stating I qualify for a co-pay program through the manufacturer of the drug. The qualifications are: 1.) you have a commercial insurance policy (meaning not Medicare, Medicaid, etc.) AND; 2.) your insurance company has approved that you need the drug. So in the appeal, it was approved. Great news! This pharmacy applied for me to be in the co-pay program, and I was approved. This provides the drug to me at an extremely discounted rate and the medication will be delivered tomorrow, June 22. 

WE ARE BEYOND THANKFUL! After a month of extreme unknowns, emotions, worry, anger, sadness - we are thrilled to finally feel some JOY‼️

My goals (and hopes!!) for now are: 1.) to tolerate this medication well; 2.) that it will work to shrink my lymph nodes and; 3.) put CLL back into remission. 

I am to see my MD Anderson team 1 month after treatment begins for a follow up. 

⭐️Always save the best for last, right? The best news we received is that Dr Burger said so far in this study they are not seeing that the addition of Rituxin to the Imbruvica treatment plan is providing any additional efficacy in bringing/keeping CLL in remission. So taking Imbruvica alone can achieve the same results. 

No more appeals. No weekly flights to Houston. No bone marrow biopsy (again - hallelujah!). No CT scans again. Yet projected SAME results. 

I look forward to reporting back with [hopefully] nothing but progress and steps toward remission. 

Thank you all for the prayer, love, and support. 

#endcancer

May 23, 2017 - Keywords 👉🏼 Research Study

 

Houston, we [I] have a problem. 

It was a sad, hard, not-fair day for me in Houston yesterday. 

I'm usually a very strong person. But I am convinced you have to cry it out sometimes. So yesterday, I did just that... cried it all out on the streets of Houston, Texas. Luckily, I was told by an amazing therapist once to do exactly that. She said, "Heidi, cry it out. Otherwise, I'm afraid you, or anyone, would go crazy." 

Yesterday was a day of disappointing news. I have had much larger than normal lymph nodes in my neck, underarms, abdomen, and groin that have concerned me for a couple of months... and they are also the reason I went to MD Anderson yesterday vs my much later appointment scheduled for August. Unfortunately, remission for now is over. I still have mostly great blood work, but the size of my lymph nodes show active CLL. 

Boo. 

I was overwhelmed with information yesterday, but today after being home again, and sorting it all out with my husband, we have decided to opt in for a research study that I qualify for. As scared as I am, and as much as I'm dreading a lot of the procedures and testing, overall we are thankful I get to be a part of it. MD Anderson is such an amazing place on the front-lines of cancer cures and treatment breakthroughs; we are overjoyed to even be considered. 

We are still firming up things with Houston, insurance, research departments, etc., but if all goes smoothly I will begin this study and treatment in June. This study will put me in Houston A WHOLE LOT. But this should only last 6 months. 

We are hopeful, prayerful, scared, and thankful. If you know me at all, you know I'm a planner like no one else. Things like this usually throw me for a loop. (Hello Type A personality) But I'm determined to make this go as smoothly for my family (and mostly my Jackson) as best I can. We have amazing family and friends who will help us through this all! For now, thank you for the love... Let's cry it out, then square our shoulders, and proceed on this #kickcancersass mission! 

And yes! I'm really teaching 9:45 Pure Barre Memphis tomorrow - so you should come!! 

April 17, 2017 - the only thing that remains the same is that everything changes

 

I've learned to never settle into thinking things will remain as they are. I'm sure you have too. That's what life is all about! Change is the one thing we can count on. 

While enjoying remission (enjoying it 100% above in Big Sky, Montana last month) I started to find swollen lymph nodes in my neck. The nodes were swollen to a size I haven't seen since my diagnosis. I had several sinus infections over the last few months, so my doctors (and I!!!) truly hoped it was because of that. Infection usually = swollen lymph nodes. It's what they are supposed to do in this case; it's their job. 

I had a sinus CT last week showing no infection *neat* 😞 - that's not what we love to hear. I contacted my team at MD Anderson who said the swollen nodes may be related to CLL, and I should come back sooner than my next scheduled appointment in August. So I will be returning toward the end of May.

I feel fine. But I always have. I will keep you posted. Thank you again for loving me as this dark cloud (aka leukemia) follows me. For now, I am going to enjoy LIFE!