I caught up with Dr. Sameer Parikh out of Mayo Clinic, Rochester, MN in Edinburgh, Scotland at the annual congress of iwCLL in 2019. iwCLL is the international workshop for CLL and every talk at the 4 day meeting is on CLL.
We discussed his research on patients who interrupted their daily dose of ibrutinib.
There are many reasons patients might need to hold their medications.
These include, but are not limited to:
- Needing a procedure where the ibrutinib is held to reduce bleeding risk
- Another illness
- Side effects
- Forgetting the medication
- Changes in insurance or other problems with the prescription including the cost
Dr. Parikh studied 372 patients of whom a full 40%, or approximately 140, had to interrupt their ibrutinib. To be clear, this is a different group than those who stopped the meds due to disease progression or intolerance.
- About 20% – 25% had some “flare” when holding the meds.
- About 10% of the flares were severe with a few patients having such rapid disease progression that they needed to be in the ICU.
- Symptoms consistent with the CLL becoming active again included:
- Generalized malaise
- Enlargement of spleen
- Increased lymphocyte count
- Swelling of lymph nodes
- Rising LDH, a blood test that is a marker of increased tumor activity
- The good news is that the moment the patient re-introduces ibrutinib, the flare is controlled.
- Some patients needed steroids to control symptoms.
- While the data is still being analyzed, the patients who seemed to be at highest risk are those whose CLL is poorly controlled and close to relapse and those with unmutated IgHV.
Ibrutinib has revolutionized the treatment of CLL but it rarely fully eradicates the disease and patients can relapse.
However, most patients are able to enjoy the benefit of the CLL suppression for years but may need to interrupt therapy for a routine procedure such as colonoscopy or a minor surgery.
We know from past research that a short pause of greater than one week may increase the risk of progression in previously treated patients. See Impact of ibrutinib dose adherence on therapeutic efficacy in patients with previously treated CLL / SLL by Dr. Barr.
Dr. Byrd wrote this article, Top 15 questions on Ibrutinib over 3 years ago, but it is still relevant today.
This research gives us another reason to try to get back on the medications as soon as circumstances allow and to be consistent with our dosing. This is probably most important in the first year of treatment when the disease burden is the highest.
Please watch my interview from iwCLL 2019 with Dr. Dr. Parikh.
Stay strong. We are all in this together