What Patients Should Ask Their Doctor Before Starting Leukemia Treatment—But Often Don't

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For anyone dealing with leukemia, the timeframe between diagnosis and treatment can feel overwhelming, and it’s natural to have a lot of questions about what’s ahead. But sometimes, there are so many concerns about treatment schedules, potential side effects, and possible medication changes, that it’s easy to miss a few questions beyond the scope of treatment specifics.

To make sure you’re making the most of your pre-treatment discussions, we asked for some insights from Jack Jacoub, M.D., medical oncologist and medical director of MemorialCare Cancer Institute at Orange Coast Medical Center in Fountain Valley, California. He told HealthCentral by phone that there are a handful of questions that he doesn’t get asked often by leukemia patients getting ready for treatment—but believes that he should.

Can I have a copy of my pathology report?

Every patient should understand their diagnosis, and what their cancer looks like under the microscope. But beyond that, they should also have a copy of everything I have, from the pathology report to the list of drugs that will be used and when, the treatment outline, the sequence of treatments, prescriptions that may be needed, and which doctors they’ll be seeing throughout the treatment process.

Leukemia is, unfortunately, the type of cancer that can recur after years in remission. If that happens, it’s crucial to have all your records about everything in one place, in case your care team changes. Also, for many people, simply having all this information organized helps with anxiety because they feel better prepared.

Who can I call at 3 a.m. on a Sunday?

It would be nice if treatment side effects only occurred during office hours, but obviously that’s not the case. You shouldn’t have to wait for hours or even days if you’re experiencing problems like nausea.

Before you begin your leukemia treatment, you should have a list of numbers for people like nurse navigators or other on-call members of your care team so you know that you’re covered, no matter when issues might come up.

What type of exercise can I do in preparation for treatment?

Exercise has been shown to improve tolerability of chemotherapy, so starting an exercise plan now, before treatment, is a great idea. Talk with your doctor about what makes the most sense for you, especially if you have other considerations like previous injuries. Maybe you can simply start with walking every day and increase that gradually before and during treatment.

Getting on track with exercise before you start treatment is so important, because it will make it more helpful to continue doing that during treatment, when you’re likely to feel fatigue. It seems counterintuitive to exercise when you’re feeling fatigued, but if you rest too much, then you’re likely to make the fatigue worse.

What should I be eating right now?

Your doctor may refer you to someone who specializes in oncology nutrition for this one, but it’s good to ask the question to get that referral. In general, this is not the time to focus on weight loss, but you should really cut out processed sugar if you can. Increasingly, there’s data to suggest that those sugars may be related to cancer development and growth. You’ll also want to increase your protein, most likely, and make sure you’re eating nutrient-dense foods.

Much like exercise, it’s very helpful to make these changes before treatment starts so that they become a habit by the time you’re in treatment. That makes it easier to continue with these healthy strategies. Asking your doctor about resources like physical therapists or nutrition professionals can put you in touch with the experts you need.

What do my caregivers need to know?

This is a great question, because your caregivers will likely become pretty involved in your treatment, and it’s very useful that they know what to expect from the beginning. For example, they’re likely to be the ones to take notes during doctor’s visits, to keep track of schedules involving treatments, tests, and scans. They should have a good handle on what type of side effects might happen, and what prescriptions need to be taken and at what times.

They also need to know that it’s important for them to build in rest time for themselves. Caregivers are great at taking the load off the person with cancer, but they’re not always good at removing that load for themselves. Having a candid conversation about expectations and self-care upfront is helpful for everyone involved.

See more helpful articles:

Leukemia: How to Get the Best Care

Top Resources for Leukemia Support

Leukemia: What to Eat to Support Your Recovery