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 

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!