Tag Archive for: CLL progression

What Is Watch and Wait in CLL?

What is Watch and Wait in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients often experience watch and wait, but what is it? Watch to learn about watch and wait and what CLL patients can expect during this period.

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How to Approach Side Effects with CLL Medications


Transcript:

Chronic lymphocytic leukemia (CLL) patients will often have a period of monitoring called watch and wait. Watch and wait is also known as watchful waiting or active surveillance. During watch and wait, CLL care providers check blood counts and perform medical examinations on a regular basis to gauge whether any disease progression of concern occurs.

One of the reasons that CLL is sometimes referred to as a “good cancer” is due to the fact that many CLL patients remain in watch and wait for a period of years rather than months. Though some CLL patients refer to watch and wait as “watch and worry,” CLL research has proven active surveillance as optimal for some CLL disease states. This strategy of watch and wait is the standard of care when a patient experiences no symptoms and only has small changes in blood counts.

Brian Hill, MD, PhD:

“We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.

And have an early detection and immediate treatment to cure breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.

So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists.”

CLL care providers will monitor blood counts and symptoms carefully to determine when a patient should move from watch and wait to active treatment.

What is the Prognosis of CLL?

What is the Prognosis of CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) can progress in two different ways. Watch to learn about the prognosis, monitoring, and treatment for each CLL type.

See More from START HERE CLL

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What is Watch and Wait in CLL?

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How to Approach Side Effects with CLL Medications


Transcript:

Chronic lymphocytic leukemia (CLL) patients generally have a better outlook compared to other cancer types – with a higher 5-year survival rate of about 83 percent. There are two types of CLL – one being a slower-growing type and the other a faster-growing type. 

The slower-growing type features higher lymphocytes with slightly low platelets, neutrophils, and red cells. While the faster-growing type produces too many CLL cells in the blood that prevent proper function of red cells and platelets. With the two different types of CLL, patients may have very different patient journeys depending on their disease 

While some CLL patients experience very gradual disease progression and are actively monitored during a watch-and-wait phase, other patients may experience a more expedited CLL progression and will need more frequent treatment. 

Dr. Kerry Rogers:                 

“So, for many people, CLL is a very manageable disease. Like I said, some people have had CLL longer than I’ve been a doctor and have needed no treatment for it. However, there are people with CLL that go on to have a lot of difficulty from it, including not doing well with more than therapy or needing really new, advanced therapies, like something called CAR T-cell therapy.

So, for any individual person, you can never say how it’s gonna turn out for them, but we do use our experience taking care of lots of people with CLL to make an educated guess as to if this person’s gonna be someone that’s gonna expect to need a lot of treatment in their lifetime, or maybe no treatment in their lifetime.”

CLL research continues to advance, and clinical trials bring more refined treatments for patients to improve both CLL symptoms and treatment side effects over time. Ask your CLL specialist if you have questions about research advances and check reliable sources like the Patient Empowerment Network, The Leukemia & Lymphoma Society (LLS), and the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) annual conferences.

How Is CLL Staged?

How is CLL staged? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia has various methods of staging, but what are they? Watch to learn the different methods that are used for CLL staging and how CLL risk is determined.

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Transcript:

Chronic lymphocytic leukemia (CLL) specialists have used three different staging systems to assist them in forecasting disease progression and creating suitable treatment plans for patients. Depending on where or when a CLL patient has been diagnosed and monitored, their specialist(s) may have used the Rai staging system, Binet staging system, and/or CLL International Prognostic Index (CLL-IPI).

Dr. Kerry Rogers:

“So, unlike most cancers, where CLL is staged with CT scans or PET scans, the staging for CLL is actually remarkably simple, and I really like this because it limits the amount of testing you have to do for people, especially the people that might be just monitored for their CLL or observed. You don’t wanna put them through a lot of intensive testing they don’t need. So, the only two things you need to properly stage CLL are a complete blood count and a good physical exam.”

The Rai staging system uses the three stages of low risk, intermediate risk, and high risk to categorize patients. While the Binet staging system uses the three stages of A stage, B stage, and C stage.

 In 2016, the CLL-IPI staging system was initiated worldwide to provide a unified staging system for CLL patients. 

In CLL-IPI staging, the following prognostic factors were identified, including:

  • TP53 deleted or mutated – assigned 4 points
  • Unmutated IGHV – assigned 2 points
  • Serum beta-2 microglobulin concentration greater than 3.5 mg/L – assigned 2 points
  • Rai Stage I – V or Binet Stage B – C – assigned 1 point
  • Patient age over 65 years – assigned 1 point

The point totals from the five factors in CLL-IPI staging correspond to the following recommendations:

  • Low risk – 0 to 1 point; no need to treat
  • Intermediate risk – 2 to 3 points; no need to treat unless the patient is highly symptomatic
  • High risk – 4 to 6 points; treatment unless the patient experiences no symptoms
  • Very high risk – 7 to 10 points; If the decision is made to treat, use novel agents or treatment in a clinical trial instead of chemotherapy

How Often Do CLL Patients Develop a Second Gene Mutation?

How Often Do CLL Patients Develop a Second Gene Mutation? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients can sometimes develop a second gene mutation. Watch as Dr. Nadia Khan from Fox Chase Cancer Center shares how common it is to develop a second mutation and when it’s important to retest for genetic changes.

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Transcript:

Mary Leer: 

This question comes from Laurie. How common is it for CLL patients to develop a second gene mutation? 

Dr. Nadia Khan: 

Laurie, Thanks for that question. It is not common for most call patients to have significant alterations in the genetic landscape of the CLL. With that being said, there are a few notable exceptions for CLL with TP53 dysfunction or complex cytogenetics, there is a higher likelihood that there will be genetic instability in those CLL clones. Therefore, it’s important to retest for changes if there is a change in the biology of the CLL, if there is a progression on therapy, for example, or at the time when a new therapy is planned. 

How Does CLL Progress? Understanding the Stages of CLL

How Does CLL Progress? Understanding the Stages of CLL from Patient Empowerment Network on Vimeo.

What are the specific stages of chronic lymphocytic leukemia (CLL), and how does CLL progress? Dr. Matthew Davids details the stages of CLL and indications for when it’s time to treat the condition.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

See More from Engage CLL


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An Overview of CLL Treatment Types

Transcript:

Katherine:

Okay. So, how does CLL progress? When do you know when it’s time to treat?

Dr. Davids:

The stages of CLL involve the progression of the disease. When we first meet patients, often they only have cells circulating in the blood, and that’s called stage 0 disease. It’s one of the few cancers where there’s actually a Stage 0 before even Stage I, and the reason for that is that many patients can go for years on Stage 0 disease. But as the burden of the CLL cells begin to accumulate in the body they can start to collect in their lymph nodes, and the lymph nodes can start to swell up whether it’s in the neck or the armpits or elsewhere. That’s stage I disease.

They can accumulate in the spleen, which is an organ in the abdomen. It’s kind of a big filter for your bloodstream, and as the filter traps more of these lymphocytes the spleen can slowly enlarge over time. That’s stage II disease.

And then finally, the CLL cells can get into the bone marrow, which is like the factory for making your blood cells. And if the factory floor gets all gummed up with CLL cells it can’t make the normal red cells, that’s called anemia. Or it can’t make the normal platelet cells, that’s called thrombocytopenia. And when we start to see those more advanced stages III and IV of CLL, that usually does require treatment. And what the treatment does is it clears out the factory floor and it allows for the normal machinery to make the normal blood cells again. So, that’s one of the more common reasons why treatment is needed is due to anemia and low platelets. Second reason can be if the lymph nodes or spleen get so bulky that they’re uncomfortable or threatening organs internally. We want to treat before that becomes a real threat.

And then, the third thing that usually happens as the disease progresses, patients can develop some symptoms, what we call constitutional symptoms. These can be things like unintentional weight loss, drenching night sweats that are happening on a consistent basis, and those sorts of things. So, if that’s happening at the same time as these other factors are progressing, those would be reasons to treat.

And notice that one thing I did not say is the white blood cell count itself.

That’s a common misconception. Some people think that as the white blood cell count goes higher – and people use all different thresholds, 100, 200 – that by crossing that threshold you need to start treatment. And in fact, that’s not the case. We have many patients whose white blood cell count can get very high but then it can kind of level off and plateau for a period of several years, and as long as they don’t meet those other treatment indications, they don’t need to be treated just based on the white count alone.