This is a continuation of my previous two articles that are chronicles of my fight with CLL. In continuing the series, I hope to shed light on using ibrutinib to manage CLL for those patients who are nearing the end of their “watch and wait” status and need to decide on a therapy.
In the first article found here, I described my first 30 to 60 days on ibrutinib as a treatment-naive CLL patient. I wanted to inform treatment-naive CLL patients if they were making the decision to start therapy and choosing which therapy. In my experience, I was doing a lot of research on all treatments either in trial or approved for frontline (treatment-naive) therapy.
In the second article found here, I described the first ten months, after nearly a year of taking ibrutinib and managing quite well in my daily life.
I’m writing this article to help inform those patients now taking ibrutinib, about life after stopping the daily routine or interrupting your ibrutinib regimen. I had been taking ibrutinib for 27 months before stopping. I had to stop briefly (5-10 days) as a precaution before and after undergoing a procedure that might cause some bleeding. It’s only been three months since stopping, but I’ve not seen any negative effects. Yet.
As any patient taking ibrutinib knows, there are times when you should stop taking it, such as for several days before and after any surgical procedure because of the increased risk of bleeding anomalies. I’ve had my share of starts and stops. When I first had to stop for a minor surgical procedure (cystoscopy with renal washing), it was after 15 months of taking ibrutinib. I noticed that after approximately 8-10 days after stopping, my lymph nodes under my arms (axillary nodes) and groin (femoral or inguinal lymph nodes) were growing and palpable. They disappeared after 10 days or so after I restarted my daily dose (420 mg) of ibrutinib.
I still had some blood in my urine two months later and after consulting my CLL expert and my hematologist, we dropped the dose to 280 mg of ibrutinib daily.
About 4 months after that cystoscopy, and after reviewing my CT scans, my doctor saw some swelling at the base of my tongue. As a CLL patient, these things must be fully investigated, so I underwent a biopsy which required me to stop again for about 8 days. I did not notice any lymph nodes recurring under my arms or groin area.
The swollen tongue was found to be from my CLL even though I had my lingual tonsils removed as a child. During the tongue swelling investigation however, they found an anomaly in my ear behind my ear drum. After a consult with another ENT cancer specialist plus advice from my CLL expert and hematologist, we planned another biopsy which meant I would have to stop ibrutinib again.
In October 2018, before that procedure was scheduled, I was having some heart racing issues, palpitations, and possibly skipped heartbeats. This was 26 months after starting ibrutinib. There is apparently (from anecdotal research on my part) some statistical evidence that atrial fibrillation peaks around that time for those on ibrutinib. My hematologist asked me to stop taking ibrutinib while we checked out my heart. This was about 2 weeks before my biopsy was to take place. Since I would be anesthetized, we wanted to be sure that I didn’t have any cardiac issues.
Several normal EKGs, an echocardiogram, plus a Holter monitor showed no pathological cardiac issues except for a missed and extra heartbeat during the week of wearing the Holter monitor. So, I was cleared for surgery, but I stayed off ibrutinib. The surgery found a benign growth and it was removed.
A week later I saw my CLL expert at Dana Farber. She used the term “remission” in describing my CLL status because almost all my counts were normal and suggested that I stay off ibrutinib for some time. She ordered an MRD (minimal residual disease) test and I did not resume my daily ibrutinib dosing. My hematologist agreed. My MRD status came back as 0.68% which is about 70/10,000 cells. The threshold for MRD is 1/10,000 cells and MRD-negative (or undetectable) is less than that. So, I was pretty low for only being on ibrutinib as a frontline therapy 27 months after I started.
Now, after nearly 7 months without ibrutinib, I still get palpitations which may be causing anxiety (or the other way around) but they are getting further apart. I am so concerned about these skipped beats, early beats – actually, single-beat arrhythmias — that I bought a small monitor that connects to my phone and gives me a single-lead ECG nearly any time I want. I keep it with me and have captured several anomalies all of which my cardiologist calls benign. As an aside, the device only costs $100 on Amazon or Best Buy which is quite a bit less than the out-of-pocket expense to see my cardiologist for a 12-lead ECG.
My eye issues continue even though I stopped ibrutinib. I had glaucoma and dry eye before starting ibrutinib which exacerbated the issues, as I described in my previous articles. I was hoping things would improve after stopping, but dry-eye research has not kept pace with advancements in treatments like CLL has. Apparently, the artificial tear solution is the easiest for ophthalmologists to prescribe for the very many dry-eye patients they see. They offer temporary relief, but no improvement in underlying causes. My cornea was affected once, and I do not want to repeat that experience.
I saw my hematologist in March to check for any CLL activity. My blood counts were slightly better than those in January, so we decided to continue staying off ibrutinib and go back to “watch and wait” status. My next appointment will be in July 2019 which I look forward to with my fingers crossed. My LDL has risen slightly but still in normal limits.
Right now, I feel that ibrutinib has been very effective for me. It very quickly reduced my lymph nodes to normal and brought my blood counts to near normal, as most are in the normal range. Those that aren’t are very close to normal and go in and out of normal slightly with each CBC. I also feel that my CLL will return one day. I think about it every day, so it feels very much like being on “watch and wait” the first time around. There are newer treatments approved now and, thanks to the CLL Society, I know more and feel much more optimistic about living well with CLL. Or, possibly a cure in my lifetime will end this roller coaster ride.
Stay Strong and Be Well.
Bob is a computer technologist having joined the computer industry in 1978 solving mission critical hardware and software computer failures worldwide. He designed and developed computer system solutions and products. In 2000, Bob was a founding member of a high tech startup that made high speed network switches. As Director of Engineering Operations, he was responsible for facilities management, engineering labs and equipment, Information Technology, Quality Assurance, Customer Support, and product release activities.
In 2003, Bob started his own product design company where he developed and patented the first generation of PowerSURE® Power Failure Safety Lighting wiring devices. Five years later he founded the former PowerSURE Corporation to successfully license his patents and to design additional new products.
Bob holds several patents and has helped others in their intellectual property pursuits. Bob also lectures on product development and marketing at a local technical university. He is currently experimenting with 3D scanning and printing looking for new product and service ideas.
Originally published in The CLL Tribune Q3 2019.