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.

I have often thought of this CLL journey as a long road trip. We're traveling with navigation. And we have enjoyed restful periods of uninterrupted cruise control. But sometimes we have to hit the brakes and recalculate. The destination is the same: the intersection of health and longevity. But there are detours and lane closures and bumps (hiccups -- pun intended) in the road. There are unexpected delays. There are frustrations. There are others on the same road. Some fly by in the fast lane. Others are on the side of the road with a flat tire. There are wrecks; sometimes fatalities. But always, John and I are in our vehicle together. He is the patient and I am the devoted caregiver. We have our own experiences on this journey. But we're in it together. That's why I will often hear myself saying "we" at the start of a sentence instead of "John." It's kind of like couples who say "We are pregnant." The journey isn't exactly the same for both of us. But this is happening to us as a team. Some things are harder for the patient (most things, I believe). And a few things might be harder on the caregiver.

We have recently hit another bump in the road. We had to pull over for this one, check under the hood and change the oil. The ride has been bumpy for the last year and we kind of expected that a recalibration and new route to our destination would be a necessity. We have a few more tests and a little more time at the rest stop before we embark on the new route. But we've mapped it out and I believe we'll eventually get back on cruise control for another extended ride.

John has taken Cal-101/Idelalisib possibly longer than any other patient in the world. We're not absolutely certain of that. But our specialist speculated that he may be, since he was one of the first patients to receive it in a phase one clinical trial. He began taking the drug in early May 2010 and took it uninterrupted through December 22, 2015. Five years, seven months.

That could be why John suffered a more severe withdrawal than any patient our specialist is aware of. "We" have enjoyed a nice, long remission. But John ultimately developed side effects of the drug over the past year; debilitating fatigue and chronic pain. That's the reason we are now shifting gears.

When we began that first study, we had no idea if John would respond or how long the drug would work or even what it might do to him over the long haul. But trying a non-chemo approach with a promising new drug was a more appealing choice than more harsh chemo and stem cell transplant. Other patients were taking Cal-101 in clinical trial with excellent results. And it seemed like a good option.

I am not sure how much the statistics may have changed, but at that time, I read that 40% of CLL patients having stem cell transplant did not survive the transplant. Those who had "good" outcomes were still not cured. And even a successful transplant could alter a patient's quality of life irreversibly. John was in his mid-fifties and I was desperate to find another option. Fortunately for us, I ignored warnings to stay off the Internet and connected with other CLL patients through a variety of online forums.

Cal-101/Idelalisib turned out to be a miracle pill for John. It put him in remission after chemotherapy failed to. And we were able to enjoy cruise control for quite a while. It was nice to put CLL on the back burner of our lives. We hoped it would work forever without complications. But the more realistic goal was to keep John in remission without the harsh toxicity of chemotherapy for as long as possible while other -- even better -- options came down the pipeline. The goal with a chronic blood cancer like CLL is to stick around and stay as healthy as possible because a cure could be right around the corner.

As I mentioned in my last blog post, John has to be without treatment for roughly one month (28 days) before starting the new clincical trial. I wanted to let everyone know that he is through the worst part -- withdrawal from the previous drug. I can't tell you that he feels good, but he's a lot better than he was. His lymph nodes are swollen pretty much everywhere and that's not comfortable, but the good news is that his platelets have rebounded and all his blood work is holding steady. We will begin the new treatment protocol on January 25.

We are thankful to have the opportunity to participate in another clinical trial. And I will update my blog with his progress for those who are interested. We are blessed to have so many caring friends and it's next to impossible to update everyone individually. I also find meaning and purpose in our journey through sharing what we've experienced and learned. My hope is that other CLL patients will find hope, strength, encouragement and helpful information here as they Google CLL and treatment options.

John does not like to have a lot of attention brought to himself. He's more private than I am. And he can be a bit reclusive in times like this. If you've ever seen him on stage or in a social setting, you might think of him as an extrovert because he's lively and entertaining, funny and quick witted. He was a professional musician for years. And, at his best, he is the life of the party. He's a fun guy and a people person in the right setting. He swept me off my feet with his humor and sensitivity. But I quickly learned that he is not an extrovert. He is actually an introvert and solitude is what recharges his batteries. He wasn't always comfortable with sharing our CLL journey. In the beginning, I had to convince him to tell his family.

But that has changed with time. He now fully appreciates the importance of sharing information for the benefit of others with this disease. That's how I knew to ask our specialist about Cal-101 when stem cell transplant was on the table. Cal-101 was so new, I'm not sure our doctor expected that it would do much for John after failing the gold standard chemotherapy of FCR. It was such a nice surprise when it did. But I knew someone online who had been in much worse shape than John and was back at work after taking it in clinical trial. He became one of my online CLL friends and he wrote to me, urging me to persuade John to avoid stem cell transplant and ask to participate in the clinical trial. At that point, I didn't even realize you could bring it up and ask for it as a patient. It really pays to be your own advocate and learn everything you can on these health journeys. But if nobody is sharing their experiences, we cannot benefit from each other. So I'm thankful John gave me his blessing to blog about our journey and his treatment a number of years ago.

I've enjoyed putting CLL on the back burner the last few years. It's front burner right now and it will be for the next few months. But I fully anticipate resetting the cruise control and settling in for another long ride. Patients receiving these drugs have been getting incredible results. And John's health apart from his CLL is excellent.

I won't pretend the last year hasn't been rough (especially for John) and the last few weeks have been extremely challenging for both of us. But I believe we are cresting the hill and a beautiful view is just ahead.

I'm excited, optimistic and thankful. And relieved that the withdrawal is in our rearview mirror.


Yes these are very much painful diseases and more strength and courage is needed to fight with and get proper treatment as well.

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