Which CLL treatment approach might be best for your individual disease? This animated video walks through important considerations that help guide treatment decisions, including genetic testing results, lifestyle factors and patient preference.
|How to Be A Partner in Your CLL Care
|Key CLL Treatment Decision-Making Factors
Hi, I’m Christy. I’m a nurse practitioner and I specialize in chronic lymphocytic leukemia, or CLL. With a variety of available treatment options, CLL patients often wonder which approach might be best for their individual disease.
Before we walk through the information that goes into choosing a treatment approach, I want to remind you that this video is intended to help educate CLL patients and their loved ones and shouldn’t be a replacement for advice from your doctor.
So, how is a treatment path determined?
CLL physicians will typically consider several key factors to help guide the decision.
When many CLL patients are first diagnosed, their medical team may use an approach called “watch and wait” or “active surveillance.” This means that treatment won’t begin immediately. Their healthcare team will monitor their CLL via in-person visits and lab testing. And, some patients may never even need treatment, depending on their individual situation.
But, if bloodwork indicates advanced disease, enlarged, bothersome lymph nodes develop, or, if symptoms like fatigue and night sweats are negatively affecting a patient’s daily life, then it may be time to treat the CLL.
Physicians typically consider a patient’s age, overall health, and existing conditions before they suggest an approach. There are also several tests on the CLL cells that may help guide treatment decisions.
Physicians use immune globulin heavy chain gene, also known as IGHV, mutational analysis to determine whether a patient is IGHV mutated or unmutated.
In IGHV mutation analysis testing, being “mutated” is a favorable finding.
If a patient’s IGHV status is mutated, and, depending on other factors such as age and overall health, the physician may recommend a treatment called FCR. FCR stands for the drugs used in this approach, which are two chemotherapy drugs combined with a targeted treatment that is a monoclonal antibody.
However, it is important to realize that due to side effects and other risks, chemotherapy is not for everybody. Non-chemotherapy treatments work very well for IGHV mutated patients as well as unmutated patients.
If a patient has unmutated IGHV, then a targeted treatment or a clinical trial might be more effective.
Molecular testing, also known as genetic testing, can identify specific genes, proteins, chromosome changes, and other factors unique to your CLL.
The results can provide your healthcare team with information related to prognosis, risk and which therapy may be most effective in treating your disease.
One of the most widely used tests is call a FISH test and it looks for specific changes in the chromosomes of your CLL cells. These specific changes can help understand how well certain treatments are likely to work for you.
For example, patients with the chromosome abnormality “17p deletion” may have higher-risk disease and will not respond well to chemotherapies such as FCR. An oral targeted treatment approach or a clinical trial will be more effective in patients with 17p deletion.
There are several types of targeted treatments that are currently approved to treat CLL including:
- Monoclonal Antibodies, which work by targeting specific proteins on cancer cells.
- And, Kinase Inhibitors, which work by blocking proteins that tell the cancer cell to grow and survive.
- A combination of treatment approaches may also be considered.
Before you start any treatment, it’s essential to ask your doctor if you have had relevant CLL genetic testing, including FISH testing, and what the results could mean for you.
Finally, one of the most important factors that your healthcare team will consider is YOUR treatment goals.
It’s very important to consider a treatment’s course and potential side effects.
With the many options available today to treat CLL, you will be able to get effective treatment. How your treatment choice affects your other health conditions and your lifestyle is essential.
Remember, you are a partner in your care and have an active voice in finding the best treatment for you.
When treatment is discussed may be a good time to consider a second opinion or a consult with a specialist. If you don’t feel supported or an active member of your team, then it is always best to get another opinion if you are able.
So, how can you put this information to work for you and help improve your care?
- Talk to your physician about what you’ve learned.
- Ask about testing mentioned in this video and whether you need to be retested over time.
- Discuss clinical trials with your physician.
- Visit credible resources to stay up to date on CLL information.
Visit powerfulpatients.org/cll to learn more about CLL.