Living with leukemia can involve periods of treatment, monitoring, recovery, and waiting. Symptoms and treatment side effects may affect your daily life, while blood tests and questions about what comes next can create an emotional burden of their own.

Recently, we asked MyLeukemiaTeam members which challenge currently has the biggest impact on them. Their responses showed how uncertainty, fatigue, treatment effects, and other health concerns can overlap.

More than half of respondents chose waiting, monitoring, or uncertainty. Nearly one-third selected symptoms or treatment side effects. Their comments revealed how these challenges can affect everyday life, from worrying about blood test results to managing fatigue, treatment side effects, and other health concerns.

No two experiences with leukemia are the same. The challenges you face may depend on the type of leukemia you have, where you are in your treatment or monitoring, and your overall health. What feels most difficult may also change over time. Your healthcare provider is the best source of guidance for your situation.

For many members, uncertainty was a major part of living with leukemia. Blood tests, biopsies, watch-and-wait periods, and worries about progression could make even stable periods stressful.

For some people with slower-growing blood cancers, active surveillance involves regular exams and blood tests without starting treatment right away. The decision to begin treatment depends on changes in symptoms, test results, and the type of leukemia.

One MyLeukemiaTeam member described how changes in blood test results could cause worry, even after 19 years of monitoring: “I’ve been watching for 19 years, and only one time it got high enough to be concerned, but it went back down. Every time I go get my blood checked, I get worried, ‘Is this the time?’”

“Every time I go get my blood checked, I get worried, ‘Is this the time?’”

 

— A MyLeukemiaTeam member

Another member explained that even reassuring news and longer intervals between appointments didn’t necessarily ease the uncertainty: “I have confidence in my doctor, but this visit, he changed me to six months for visits, which makes me have to wonder more … what’s going on with me. He said I’m stable, but I still have a problem of just waiting.”

What Might Help

If waiting for test results or appointments causes anxiety, consider asking your leukemia care team what they’re monitoring, what changes they’re watching for, and which symptoms should prompt you to contact them between visits. Understanding why appointments are spaced a certain way may help you feel more prepared.

You can also ask about counseling or support groups for people living with cancer. Connecting with others who understand the uncertainty of watch and wait may help you feel less alone.

About 3 in 10 respondents selected symptoms or treatment side effects. Leukemia and its treatments can cause side effects such as fatigue, nausea, headaches, memory and concentration problems, and nerve pain or weakness.

One MyLeukemiaTeam member described how fatigue limited even routine activities: “Fatigue is my biggest enemy! My bloodwork is normal and my diet good but can’t do more than a few minutes of even lightly strenuous activity, including walking more than a few hundred feet or even driving for more than 30 minutes.”

“My bloodwork is normal and my diet good but can’t do more than a few minutes of even lightly strenuous activity.”

 

— A MyLeukemiaTeam member

For another member, several treatment side effects were challenging: “My biggest challenges right now are side effects from chemo pill. I have frequent headaches, nausea, and memory loss, to name a few.”

What Might Help

If fatigue or other symptoms interfere with daily activities, tell your leukemia care team, even if your blood test results are stable.

Ask whether the symptoms could be related to leukemia, treatment, or another health issue, and what might help manage them. Keeping a record of when symptoms occur, how severe they are, and what activities they affect may help your care team identify patterns.

If treatment side effects are difficult to tolerate, ask about ways to manage them rather than changing medications on your own.

Leukemia is sometimes only one of several health challenges a person faces. Members described other chronic conditions, infections, and the difficulty of balancing their health with work and family responsibilities.

One MyLeukemiaTeam member described how hard it can be to understand symptoms when several conditions overlap: “I am struggling with how to relate how I’m feeling to the disease I have: CLL, CKD, diabetes, and heart problems. I don’t know what symptoms go with which.”

“I am struggling with how to relate how I’m feeling to the disease I have: CLL, CKD, diabetes, and heart problems. I don’t know what symptoms go with which.”

 

— A MyLeukemiaTeam member

CLL stands for chronic lymphocytic leukemia and CKD is short for chronic kidney disease.

Another member described how leukemia’s effects aren’t always visible to others, making family responsibilities and relationships more difficult: “For me, it’s the invisibility of my disease. … When I ask for help, I get pushback. It’s like they need me to be 100 pounds and losing my hair to know I need a break every now and then.”

What Might Help

When you’re managing leukemia alongside other conditions, consider asking your healthcare providers to review your symptoms and medications together. A primary care provider may be able to help coordinate care among specialists.

If health problems make it harder to work, care for family members, or manage daily responsibilities, ask about social workers or other support services. Counseling and community support groups may also help with emotional strain.

Only 6.5 percent of respondents selected choosing, accessing, or affording care or treatment as their biggest challenge. Still, member comments highlighted the importance of understanding treatment decisions, finding doctors who listen, and coordinating care across specialists.

One MyLeukemiaTeam member described changing doctors after feeling their concerns weren’t being addressed: “I gave up asking and changed doctors. ... I feel heard, included, and respected. My prior doctor was OK. He just didn’t seem to listen or want to debate my goals and treatments.”

Another member described the challenges of coordinating treatment while managing other medical conditions: “I have also had other medical issues, and having to make sure physicians communicate with each other is tough. [My treatment] interacts poorly with a LOT of meds. There are times I want to throw up my hands and say ‘Enough.’”

“I have also had other medical issues, and having to make sure physicians communicate with each other is tough.”

 

— A MyLeukemiaTeam member

What Might Help

If you feel your concerns aren’t being addressed, ask your doctor to explain the reasoning behind your care plan or whether a second opinion might be helpful.

Bringing a written list of questions to appointments can help you cover what’s important to you. If you see multiple specialists, ask how they can share information about your medications and treatments. A pharmacist can help review possible drug interactions.

For barriers involving travel, insurance, or treatment costs, ask whether a patient navigator, oncology social worker, or financial counselor can help. Blood Cancer United offers support resources for people with blood cancer and their loved ones.