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 16, 2019 - stop. rewind.

Well, stopping Imbruvica did not work for me. I have had immediate node swelling (5 lbs worth actually). And the most scary part is the pain. I counted over 60 nodes all over my body that I can feel and that hurt. HURT! Can’t even tell you. It’s getting worse by the day. So after talking to my Houston team this morning, we decided I need to restart my medication, get things under control again, and get back to Houston ASAP. I am going next Thursday, August 22. We are hoping the nodes will be controlled again, and we will discuss a new game plan. 

I’m in Montana right now which couldn’t have been better medicine for me. I don’t have to parent; I don’t have to do laundry; I don’t have to care for anyone but myself—and I get to do it in the most beautiful place in the US. I’ll keep you posted! Thank you for the support! I got this. 💪🏼

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