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!! 🍷🍷🍷

November 15, 2016 - Remission 👉🏼continued!

 

I followed up with my oncology team at MD Anderson today. I just love my nurse, nurse practitioner and doctor. They work together so well and so professionally. They each have perfect bedside manner as well. 

I was yet again the youngest person on the leukemia floor, and I always win the award for craziest pants (had to get up at 4am for my flight. Workout leggings are the easiest and most plentiful thing in my closet #sorrynotsorry 😉)

My lab work looks great! My white blood cell count is elevated from my last visit (August), but it did not double. Watching for it to double is one of the major signs of active CLL. My platelets are even higher than in August, which is great! I have a lymph node that has enlarged in my neck, but that is all that has changed! (Yay!)

He wants me to have blood work wth my primary care doctor in 3 months, and he wants me to see him again in 6 months. 

I do feel like there is a dark cloud following me... like "here I am... I will make you feel bad... you just wait." I guess those thoughts/fears are what I have to learn to live with as someone with chronic cancer.

I am so thankful for a good visit! I feel very fortunate! Thank you for the prayers, for following my updates, and for your continual support. 

See ya in SIX, Houston. I'm out! ✌🏼

August 18, 2016 - Remission!

 

I'm in Houston!

You are right. The above picture is NOT Houston... Not in the slightest. This picture was taken in Montana a few weeks ago, and it is much prettier than my current Houston landscape - so here ya go!

I had a wonderful summer. I was lucky enough to have a couple of vacations, one of which where I was in the beautiful state of Montana. However, throughout the summer fun I always had this dreaded deadline at the end of the summer: my next appointment at MD Anderson. 

It felt like this defining day like "here's the end" or "it all starts to be terrible on this day"... But at my appointment, I finally got to put that dreadful feeling behind me because I got very good news. Great news, actually. 

The words REMISSION were used. These are words I never thought I'd hear. 

Dr. Burger said my labs look really good... Good enough to call it "remission"!! He said at my last visit in May, it was skewed from the chemo-immunotherapy that I received in April, but this time they all look truly normal. NORMAL - my new favorite word. I used to hate that word, but today... I love it. My platelets are 327, up from 207 - which is really good. When they get to the 100's - that's one of the factors indicating time for treatment. (There are many factors, however.)

My hemoglobin came back up to 12.7 after the chemo, which is when it was 11.8. My WBC (white blood cell count) is 5.0 which is low normal, but still normal. 

He said that because my labs show remission (NORMAL! favorite word) that he still can't test the mutational status. Mutational status tells you how aggressive your specific CLL is... So we still don't know that - but remember my ZAP-70 was positive - which is usually associated with a "more aggressive CLL."

He was going to let me go until January before coming back for my next follow up, but then when he learned of all the sinus infections I've had over the last 3 months, he decided that he wants me back in November. After that, if I'm still NORMAL, I may be able to go 6 months before coming back again for a follow up. 

He told me overall to listen to my body. He reminded (warned!!) me that I can get sick easier than most, and that having no spleen makes it even worse, as I've known. He told me to rest. 

REST. 

These are not words I'm used to. He told me to please rest when I need to. He highly recommended to keep life/work/all-the-things at a steady, not stressed out, pace. He said THIS will keep CLL in remission longer. 

So life, keep it cool. Alright?!?! 

Once again, thank you for loving me and supporting me through this CLL journey.

🍷cheers to normal!🍷