CLL: What to Consider Before Your Treatment Begins

Health Writer
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If you live with chronic lymphocytic leukemia or love and care for someone who does, you’re likely well aware that treatment comes with many unwanted physical side effects. It’s important to also consider the other ways CLL can affect life in the long term, from your fertility to your finances. Here’s how to move forward with confidence.


Get your team on board

Are you talking regularly with your health care team? Make sure to ask detailed questions about side effects before starting any treatment —including your emotional health — and which drugs, therapies, and other forms of support may help.

When you do experience side effects, report them to the team right away — even if they seem minor to you. Remember that people often have different reactions to the same treatment.


Watch for “invisible” side effects

Most people need help managing the social and emotional effects of cancer treatment as well as the physical. Many CLL patients experience concerns about self-image, in addition to some intense anxiety, fear, depression, anger and guilt.

Be sure to share how you’re feeling about with your care team. You can even ask for a referral for psychiatric oncology, or get hooked up with another form of support, including helplines, cancer support groups, or a support buddy.


Discuss fertility sooner rather than later

The bad news is that chemotherapy and other cancer treatments can harm your fertility — for both men and women. The good news is that there are many options for preserving your fertility, even for children.

Remember: Most options for preserving fertility need to take place before treatment, so take care to discuss with your care team as early as possible.


Dealing with short-term physical effects

If you’re cursing the immediate physical effects from treatment, chemotherapy is the most likely culprit. As you probably know, chemo can cause everything from hair loss to nausea to fatigue. That’s because as it kills cancer cells, it damages healthy cells along the way.

If you can’t tolerate these effects, even if you’re also taking anti-nausea meds, other types of drugs may be more palatable. Because they can also cause side effects of their own, such as itching, fever, chills and headaches, you’ll probably be given medication to combat the effects before your infusion.

Finding the best drug, or combination of drug, for you includes considering all the side effects. You can also use an app to track your short-term effects.


Anticipate long-term physical effects

Some side effects linger even after treatment is over. Changes in your taste buds, for example, may make strawberry ice cream taste like cardboard. Your fingers and toes may tingle. And even longer-term effects include heart, lung, bone, brain and nerve issues.

It’s important to be proactive about these concerns. Ask you care team about booking appointments with other specialists to monitor longer-term effects, and find out if there are any specific symptoms you should be on the lookout for.

And make sure you ask your cancer care team for a survivorship care plan!


What’s a survivorship care plan?

CLL is rarely cured, but survivors don’t always need constant treatment. That may mean a break from side effects. But it’s also essential that your care team gives you a survivorship care plan so you can easily transfer between primary care and cancer care. The care plan should include all information about side effects, so you don’t have to repeat any pain unnecessarily. And information about when to contact your doctor with any concerns about late side effects.


Be a guinea pig

There are many reasons to participate in clinical trials, including the fact that some of the experimental treatments are being studied because they have fewer side effects than traditional treatments. For example, kinase inhibitor drugs target specific enzymes in the cancer cells and result in — you guessed it — fewer side effects.


Make sense of finances

As you’ve probably discovered, your insurance may not cover all aspects of your CLL treatment. Taking time off of work for treatment can make the financial hit a double whammy.

Oncology social workers and nurses can help find support and resources. Some of these organizations may provide assistance as well.