Wednesday, February 3, 2016


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Monday, February 1, 2016

They say a picture is worth 1,000 words...

Today: John getting ready for Week #2 of Obinutuzumab
(AFTER his first dose)

I'm starting with the "after" picture.

I purposely waited until our second week of treatment to post a blog update for a couple of reasons, but primarily because I believed that John would allow me to share "before" and "after" photos of his neck once he was feeling (and looking) a little better. I had a hard time convincing him even to let me take a picture of him one week ago.

And here's why...
He was miserable.

January 24: The night BEFORE starting treatment

After a month without any treatment, John's lymph nodes had become bulky throughout his body. His white count had increased and platelets were down. But his blood has never been where his CLL prefers to "hang out." John's chronic leukemia has always behaved more like a lymphoma, with the unhealthy white blood cells proliferating in his lymph nodes.

*For those of you who are unfamiliar with CLL or just beginning your own CLL journey, CLL stands for Chronic Lymphocytic Leukemia. The unhealthy white cells are lymphocytes. They are generated in the bone marrow, but travel and congregate in the blood and lymph nodes. Since they are unhealthy cells, they do not function as they should. And one of their dysfunctions is that they lose the ability to die off after fulfilling their purpose (fighting infection), as healthy lymphocytes do. This process of cell death is programmed into the DNA of healthy cells. Its clinical term is apoptosis. So, not only are these unhealthy/malignant cells compromised in doing their job, as they multiply they can crowd out the healthy cells. Subsequently, a CLL patient can experience anemia (low HG/RBC), neutropenia (low neutrophils) and/or thrombocytopenia (low platelet counts). There are a variety of ways CLL can affect you and your health. And not all patients progress along one specific path. Some patients have a very indolent CLL that never requires treatment. Others have an aggressive CLL. And then there are patients in the middle, like John. He has neither the indolent nor the most aggressive CLL on the spectrum.

John's first abnormal CBC was April 2007. He was officially diagnosed with CLL in June. He started out in watch and wait. He received Rituxan (monoclonal antibody) as his first treatment in 2008. He received FCR+lumiliximab in 2009/10 (a chemo combination trial, lumi was the experimental drug). FCR was then the gold standard CLL therapy, but John failed to respond. His lymph nodes were reduced by about half while receiving the drugs, but came right back in force as soon as the six months of infusions were concluded. That trial was studying the addition of lumi to hopefully enhance the results of standard therapy FCR. It did not prove to be a helpful addition.

In May 2010, John was enrolled in an early clinical trial with CAL-101 (now Idelalisib) as single agent. He began at the lowest dose (50 mg./2X daily). He graduated to 100 mg. and then 150 mg. over time, staying in remission for the next five and a half years. But last year John developed chronic pain and, after ruling out any possible unrelated health issues, it was determined that his pain was drug-related. So, on December 23, John stopped taking Idelalisib cold turkey. He then pushed through a full two weeks of withdrawal sickness and a month of his CLL flaring (mostly in his lymph nodes, as you see in the above photo). And on January 25, he was able to start his new clinical trial with Gazyva (aka Obinutuzumab) and Venetoclax (aka ABT-199).

I thought I would never learn to say Obinutuzumab, but I find it now just rolling off my tongue. (I love how just being able to say the name of these drugs impresses people.)

John received 1/10th of his initial dose on Monday, very slowly. And then he received the remaining 9/10ths on Tuesday. Infusion days are long; especially the first two. 

We arrive at 7:30 am for infusion days. 

On Monday, we didn't leave until almost 7:00 pm. Tuesday we were out by about 5:00. And today we expect to be leaving closer to 3:00. 

Those first infusions are given extra-slowly as patients typically have some sort of reaction. And when they do, the drip is stopped while the reaction is dealt with. John had only one reaction on Day #1 -- uncontrollable shaking/shivering. He was given Demerol. His body relaxed. He then continued with the infusion uneventfully.

Pre-meds of IV Benadryl, Decadron and Tylenol help to minimize reactions. Most reactions occur with the first infusion. Since John did fine he only had to have half as much Decadron this week. And on his third infusion, he may not have to have any at all. John struggled to sleep for several nights after last week's infusions and we think it was probably the steroid. From my recent reading (other patients' experiences), fatigue seems to be a side effect of Gazyva (especially early on) and John has experienced plenty of that. But we are pleased with his progress.

I can usually gauge how bad he feels by how much or how little he talks. Yesterday he was a lot more talkative and looked better too. 

Next week will be our third infusion day in the office clinic. On February 15, John will begin receiving Venetoclax along with his fourth infusion of Gazyva. And that's when our routine will change again. After the fourth infusion of Gazyva, John will only receive a monthly infusion through June. But for the first five weeks of Venetoclax, he will spend a couple of nights in the hospital each week for closer monitoring as the drug is introduced, then gradually increased from a 20 mg. to 400 mg. dose daily.

I've been reading a lot more since we hit this bump in the road and everything I'm reading about these drugs is very exciting. I'm thankful for the continued online support I've received from CLL Christian Friends and the CLL Forum, where I can follow and learn from the experiences of other patients and caregivers. I can't imagine trying to navigate this journey without the support, encouragement, education and camaraderie I've found online. 

One of my best pieces of advice to other patients is to IGNORE the well-intended WARNINGS about the dangers of online reading you will get from some of your friends. Yes, you might read something that scares you. But I was already scared. I needed to learn how I could be a more helpful and proactive health advocate for my husband (and his mom) as we embarked on the "new normal" of life with a diagnosis. 

John participated in his last trial as a direct result of online friendships I formed and advice I received. I knew about CAL-101 because of Randy Shannon (Hotrodder). I was able to do my own research, learn our options, and initiate dialog at an office visit, inquiring about the possibility of John trying that clinical trial rather than electing to proceed to stem cell transplant. CAL-101 changed everything for us and resulted in over five years of progression-free good health for John. Now he's embarking on this new journey with one of the most promising drugs (Venetoclax) on the CLL horizon. While reading patient experiences on CLL Forum this weekend, I found a link to a podcast in which Dr. Flinn (our CLL specialist) was talking about this clinical trial. I felt so fortunate to be in Dr. Flinn's care. It just so happens I initially found Dr. Flinn through online conversation with John Wagner on CLLCF, while I was learning the utmost importance of consulting with an actual CLL specialist before entering into any treatment. 

Make sure you're reading reputable sites, of course. But there are lots of ways to confirm that. There is so much information at our fingertips these days; not only information, but equally valuable empathy, encouragement and friendship. That's one of the main reasons I share our journey on my blog (with John's permission). I remember how important patient blogs were to me when John was first diagnosed and each time he has started a new treatment protocol. 

I'm indebted to those who have educated me, emotionally supported me, and prayed for us through our journey. I've tried to reciprocate as much as I can by sharing, being a friend, and offering my prayers. But I feel like I will never be able to give as much as I have already received. I now have CLL friends on Facebook and CLL friends in other parts of the world who keep in touch with me. Even though many of these friends are strictly online relationships, I consider them dear friends. We share a common bond. And regardless of whether we share it face to face or computer to computer, the bond is real. I will always be grateful for you, my fellow CLL warriors.

Wednesday, January 13, 2016

The Journey Continues: Venetoclax and Gazyva

Time to learn pronunciation and spelling of new drug names for this CLL caregiver.

When I first began reading about these two drugs, they were ABT-199 and Obinutuzumab. Obinutuzumab really threw me at first. I thought I'd never learn to say it or spell it. In the last three weeks, they've both quickly begun to roll right off my tongue and fingertips. But from here on, I will refer to them by their current names: Venetoclax and Gazyva.

Thursday, December 31, 2015

The Lord of the Gentle Breeze is Lord of the Rough and Tumble

On this last day of 2015, I couldn't help but reflect on the first time I heard these lyrics. It was a dark time. And it was MY world that felt crazy. In the midst of so much I couldn't understand and no clear cut answers to my questions, I would listen to this song again and again in my car. And I would sing these words out loud: " What I need is to remember one thing, that The Lord of the gentle breeze is Lord of the rough and tumble." And those words would remind me that God had a plan and God was in control, even when my world felt out of control.

Those words continue to comfort me through every rough spot I come to. The same Lord who has blessed my life with gentle breezes of peace, tranquility, love and happiness, allows me to face the rough and tumble of adversity, pain, suffering and confusion. What I see and what I feel can leave me feeling anxiety and despair. But what is real is God's still on His throne. And sometimes we all need to be reminded that He is the King of the JUNGLE .... no matter what our specific jungle may be.

Friday, December 11, 2015

Being Happy for Others

I have a lot of Facebook friends and, granted, I miss a lot of posts in my news feed because it's jammed and random and ... I honestly don't look at my news feed a lot. I mainly check notifications, which I only get from "closer" friends. I've taken the time to designate close friends and acquaintances in my settings, since I can't interact in any meaningful way with everyone whose friend request I've accepted. And I don't attempt to follow everyone in my news feed.

Having said all that, in spite of a large friend "population" on social media, I am rarely annoyed by the posts of others. If my friends are bragging, I don't seem to notice. But every now and then, I'll see a post complaining about all the bragging on Facebook. And I always wonder why I don't notice it.

I have asked myself ...

Thursday, December 10, 2015

In the Studio with Cody Wickline!

Rob (studio engineer), Cody, Me, John, Billy (producer) and Joe (Cody's dad)
In February 2015, I met Cody Wickline for the first time. We had seen his blind audition on NBC's The Voice and we were very proud to have him representing our state on the show. Our little town of Beckley was buzzing about Cody. It seemed like everywhere I went, someone would ask if we knew him and his family. When I'd say that we didn't, but we hoped to, it was always the same; "He is such a good guy and he's from such a good family." Not one person ever said anything negative. "This kid really deserves a break," they'd tell me.