CLL Awareness
VIDEO: ‘Mutual trust’ in long-term monitoring for patients with CLL
Transcript
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Long-term monitoring for me means months to years. Patients with CLL fortunately nowadays, except for the highest risk patients, the double refractories who have blown through multiple lines of therapy, those are the exception to the rule.
Most people with CLL will live a normal lifespan, frankly, with our modern treatment approaches. Part of that is surveillance, to make sure that we keep people on track and we catch relapses early, at least reasonably early. And for me, if you have low risk or intermediate risk CLL, which is defined again, molecularly and historically based on clinical data, I'll often follow folks every six months, honestly, if you're on a long-term remission, especially if you say, just come off something like a venetoclax-based treatment, have achieved a MRD-negative response to treatment and are on chronic cruise control, that honeymoon period where your immune system is recovering from treatment, CLL is in hopefully a deeper remission. For those folks, I'll spread visits out to every six months and rarely every year.
Usually, I want a couple years of data under my belt and trust and rapport that if patients have issues, they call me. So there's definitely a mutual trust there. For those folks with again, low to intermediate risk disease who have got a good response to treatment, or frankly are treatment naive and have never required treatment, and they could monitor for a while to show that they've had very stable and slowly evolving indolently progressing CLL, those folks I will oftentimes see them once a year, frankly.
But typically, for me, it's six months. If you have high risk molecular features, I typically will follow people every three months, personally, and I will do TBC with differential. I'll do a complete metabolic profile. I'll do panel LDH, uric acid and phosphate are my typical labs. I'll make sure that I've had flow cytometry intermittently. So if I see an ALC, and I'm not really sure it's truly CLL coming back after treatment, certainly a diagnosis, but say after a venetoclax-based treatment, you see a lymphocytosis, oftentimes I will try to do flow cytometry and capture serologic progression early.
And then I'll start tightening up surveillance if I start seeing that CLL has started to come back, which is unfortunately expected. CLL is currently considered incurable. We're working on that with multiple targeted therapies and car t-cell therapies. And I think within my lifetime, or at least the end of my career, I'm hoping to get a cure for CLL. But currently, we are gonna require lifelong surveillance for these folks.