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! 

February 17, 2017 - Remission is bae

 

I had lab work done in Memphis 1/31/17. I had my labs sent to MD Anderson. I heard back from the nurse practitioner this week. She said, "everything is normal, except your absolute monocyte count which is mildly elevated. This can be affected by infections and allergies [I had been sick]. Your CLL seems to be stable. Now is the time to enjoy life!" 

My May follow up in Houston has been pushed to August. 

Once again, cheers to normal!! 🍷🍷🍷