The Jackson Copeland Foundation

Leukemia FAQs

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by

Gabby Sears
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Things I Wish I’d Known When I was Diagnosed

Hearing the words, “You have leukemia,” stops time. For a moment, the world continues spinning while you are stuck in a vacuum of confusion, fear, and medical jargon.

When you are first diagnosed, your focus is entirely on survival. But once the initial shock wears off, the logistics set in. There is a steep learning curve to navigating blood cancer, and unfortunately, patients often learn about some important resources—like where to find money for treatment or where to stay near the hospital without breaking the bank—too late.

If you or a loved one has recently received a diagnosis, here are the things I wish someone had told me on Day One:

1. The Secret Nobody Tells You: There is Free Money & Other Help Available

One of the biggest stressors of cancer is the cost. Even with insurance, co-pays and deductibles can be astronomical. What doctors and nurses are often too busy to mention is that there are massive charitable organizations specifically designed to pay these bills for you.

If you don’t ask, you won’t know!

Download our free Financial Aid Action Plan

As soon as possible after your diagnosis, you (or a designated friend or family member) should look into:

  • Blood Cancer United (formerly The Leukemia & Lymphoma Society): They have a Co-Pay Assistance Program that can cover thousands of dollars in insurance premiums and drug co-pays. They also offer travel grants, gas cards, and other financial assistance.

  • The Jackson Copeland Foundation: No one fights alone! We proudly offer grants to patients and families who are in the fight against leukemia. Our financial assistance grants for leukemia patients are streamlined and easy to apply for. Grants are awarded from $250 up to $1000 depending on the patient’s circumstances (and subject to availability of funds and board approval).
  • Free or Low Cost Lodging Options: The American Cancer Society operates several Hope Lodges near major cancer centers that may offer free or reduced-cost lodging for patients and caregivers. The Ronald McDonald House is another option for families with younger patients (their age limit is typically 21, though some facilities may differ). There may be other options as well, depending on your location.

Each year, 200,000 people travel 40+ miles to receive cancer treatment. With a typical treatment regimen lasting several weeks, travel often skyrockets the cost of care. Lodging alone can cost up to $17,000!

Hotel Discounts: Many hotels near hospitals offer discounts to patients and families. The best approach is generally to call ahead (speak to the front desk, not central reservations), and ask if they offer a discount for [Name of Treatment Facility] patients and families, and what the requirements are. For example, they may require a diagnosis letter from your provider to add to their system.

Note: This is not an exhaustive list, and available resources for leukemia patients and families change over time, so don’t be afraid to search for other sources of financial assistance! Pro Tip: Assign a family member to be your “Financial Advocate.” Give them permission to call these organizations immediately, as grant funds open and close quickly based on funding availability.

Counseling & Psychological Support: To say a leukemia diagnosis is stressful is a massive understatement! Don’t be afraid to ask for help if you are struggling mentally or emotionally. Simple things like a meeting with a counselor or a prescription for anxiety medication can go a long way towards keeping your head in the game!

Just need to talk or a confidential shoulder to cry on? Check out JCF Connects, The Cancer Wellness Center, or BetterHelp!

Prefer online connections? Check out My Leukemia Team: The Social Network for Those Living With Leukemia or the Leukemia Reddit Forums.

2. Understanding “Induction” (The First Big Step)

If you have an acute form of leukemia (like AML or ALL), your doctor likely mentioned “induction chemotherapy.” This isn’t like the chemotherapy you see in movies where you go in for a drip and go home the same day.

The “Induction” Phase Reality Check:

  • The Goal: To clear the blood of leukemia cells and induce a remission.
  • The Hospital Stay: Prepare for a long stay. Induction usually requires remaining in the hospital for 4 to 6 weeks. This is because the chemo wipes out your immune system (neutropenia), leaving you highly susceptible to infections.
  • What to Bring: You have to stay until your blood counts recover, so be sure to bring comfort items such as blankets, your favorite pillow, toiletries, and comfortable clothes, as well as things like lamps, fans, and pictures. Many patients redecorate their rooms; it can be a great distraction and make it feel more like home.
  • The Side Effects: Some patients (not all) may experience hair loss, fatigue, mouth sores (mucositis), nausea, and “chemo brain” (foggy thinking).
  • The Routine: You will likely have daily blood draws and frequent bone marrow biopsies to check if the treatment is working.

3. The Follow-Up: What is “Consolidation” Therapy?

Once induction puts you in remission, your oncologist may have you move on to consolidation therapy (sometimes called Intensification). Think of induction as “mowing the weeds” to make the cancer invisible, and consolidation as “digging up the roots” to ensure it doesn’t grow back. This phase is critical to killing any microscopic disease left behind.

The good news is that unlike the continuous month-long hospital stay of induction, consolidation is often given in cycles (or even outpatient)—you might receive high-dose chemotherapy for a few days, then recover at home for a few weeks before returning for the next round.

4. FAQ: The Questions You May be Too Afraid (or Confused) to Ask

When you are sitting in the oncologist’s office, it is easy to forget everything you wanted to ask. Based on my own experience, and those of many other patients, here are the most frequently asked questions during the first week of leukemia diagnosis.

Q: What is the difference between “Acute” and “Chronic” leukemia?

A: This is the most common point of confusion.

  • Acute (ALL, AML): Grows quickly. The cells are immature and crowd out healthy cells rapidly. Treatment usually starts immediately (often within 24 hours of diagnosis).
  • Chronic (CLL, CML): Grows slowly. The cells are more mature but function poorly. You may not need treatment right away; this is sometimes called “Watch and Wait.”

Q: Why do I need a bone marrow biopsy if you already tested my blood?

A: Blood tests show the result of the problem, but the bone marrow is the factory where the problem is happening. Doctors need to look at the marrow to determine the specific genetic mutations of the leukemia, which dictates exactly which drugs will work for you.

Q: Can I work during treatment?

A: For induction (and possibly later on for transplant) you will be in the hospital for about a month and recovering for several weeks after discharge. If you are undergoing induction chemotherapy for acute leukemia or in preparation for a stem cell transplant, the answer is usually no, unless your employer allows you to work remotely with very flexible hours. If they do, this can be a great distraction and provide some structure!

I worked full time remote during my induction and transplant with flexible hours for scans, not feeling well at times, etc. It definitely gave me purpose each day and a reason to get up each morning!

If you have a chronic form (CML/CLL) and are taking oral chemotherapy pills, many people are able to continue working outside the home during treatment, though your employer may need to make accommodations for fatigue, frequent appointments, and follow-up care.

Q: Will I need a stem cell (bone marrow) transplant?

A: Not necessarily. A transplant is usually reserved for high-risk patients or those who relapse after chemotherapy. Your genetic markers will tell your doctors if chemotherapy alone is enough to keep you in remission.

Q: Does a diagnosis mean a death sentence?

A: Medicine has changed drastically in the last 10 years. For example, CML (Chronic Myeloid Leukemia) was once fatal; now, most patients live a normal lifespan simply by taking a daily pill. Even acute leukemias have seen massive improvements in cure rates due to targeted immunotherapies.

Download our free First Appointment Checklist of questions to ask your care team!

5. Who’s Who: Your Care Team Explained

Leukemia care is a team sport. During your treatment—especially during inpatient stays—you will see a revolving door of physicians, technicians, and other specialists. You may hear this referred to as your interdisciplinary care team. Whatever it’s called, it can be confusing and hard to keep track of who does what!

Here is your cheat sheet to the people who will be fighting in your corner:

The Medical Core
  • Hematologist-Oncologist: Think of them as the “Captain of the Ship.” This is a doctor who specializes specifically in blood disorders and cancers. They set the overall treatment plan.
  • Transplant Specialist (BMT Physician): If your treatment requires a bone marrow or stem cell transplant, this specialized doctor will often “take over” your care from your primary oncologist during the transplant phase. They focus exclusively on the intense preparation, the transplant procedure, and the critical recovery period.
  • Infectious Disease (ID) Specialist: Because leukemia treatment compromises your immune system, fevers are common. This doctor is the detective who identifies the specific infection and prescribes the exact antibiotics needed.
  • Clinical Trial Coordinator: If you choose to participate in a clinical trial, this person manages your participation, ensures you meet criteria, and tracks your data.
  • Attending Physician: The senior doctor in charge of your care while you are in the hospital. They often work in shifts such as a week, so your attending physician may change from time to time during longer hospital stays.
  • Fellows & Residents: Licensed doctors receiving specialized training. They assist your attending physician with daily rounds and may handle any immediate medical needs during hospitalization.
  • Physician Assistant (PA) & Nurse Practitioner (NP): They work closely with your oncologist, prescribing meds and managing your follow-up care and outpatient appointments. You may hear these professionals and others referred to as Advanced Practitioners (APs).
  • Oncology Nurses: The heart of your daily care. They administer chemotherapy and other prescribed medications, and monitor you 24/7. Nurses usually work in 12-hour shifts and serve as your primary caregiver and point of contact for anything you need during a hospital stay. 
  • Pharmacist: They calculate precise chemotherapy dosages, check for drug interactions, and provide patient and family counseling on your prescription medications. Note that some treatments require a lot of daily medication (which may change frequently as your treatment progresses); be sure to enlist a caregiver to help you keep track of your prescriptions.
  • Technicians & Phlebotomists: The experts who draw your blood and check your vital signs. They may also assist your nurse with your inpatient care. 
  • Physical & Occupational Therapists: Physical therapists typically assist with things like strengthening exercises and walking to help you avoid extensive muscle loss during treatment. They may also assist caregivers with positioning and moving of patients, or perform assessments to make sure you are physically fit enough for planned treatments. Occupational therapists are typically more concerned with activities of daily living and helping you adapt to any physical limitations to make sure you can do things like eat, bathe, and get dressed independently.
  • Chaplain: If you or your family are in need of religious counseling, prayer, or just a shoulder to cry on, most major hospitals have a chaplain on staff who can assist with your spiritual or religious needs.
  • Urgent Care (Cancer Specific): Most major cancer centers maintain their own 24/7 urgent care clinics. This—not the standard ER—is your primary source for after-hours help, fever management, or sudden illness. Because your immune system is compromised, you generally want to avoid standard Emergency Rooms to reduce the risk of catching an infection from the general public.
  • Transfusion & Infusion Clinics (Outpatient): When you are not staying in the hospital, this is where you will spend much of your time. It is important to know the difference: Infusions are for liquid medications (like chemotherapy, antibiotics, or electrolytes). Transfusions are for blood products (Red Blood Cells for anemia or Platelets for clotting). Since you can become transfusion-dependent during treatment, bring a book or tablet—these appointments are vital but can take several hours.
Recorded Webinar: Your Care Team

The following webinar, titled Your Care Team, by the Leukemia Research Foundation highlights the value that each member brings to the team, the ways they work together to best serve the needs of leukemia patients, and how patients can navigate conversations with individual team members, and within the broader team, to receive the care and support they need:

Support & Quality of Life Team
  • Social Worker: Your navigator for non-medical logistics (transportation, lodging, disability, home health, counseling, billing, paperwork, etc. ). Your social worker can be the “glue” that holds your treatment plan together, and often acts as a conduit between different hospital departments and external organizations (such as your employer or a charity) to make sure your needs are being communicated and addressed.
  • Financial Navigator: The expert on insurance, billing, and grants.
  • Registered Dietitian: Helps you navigate diet changes and food safety (“neutropenic diet”).
  • Psychologist or Counselor: Helps process the emotional trauma of diagnosis.
  • Massage Therapist: Can help relieve stress and pain in an integrative medicine setting.
Labs

Though not a specific member of your care team, your bloodwork and bone marrow biopsy results, or “labs” will become a central focus during your treatment and recovery. Things like your CBC, platelet count, neutrophil count, ANC, WBC, MRD, blast percentage, liver enzymes, genetic mutations, and other lab results will form the basis for your medications and treatment options.

To better understand these, check out this recorded webinar titled, “AML Labs Explained: What Blood and Bone Marrow Tests Reveal After Diagnosis” by The Patient Story.

6. Tips for Managing the Information Overload

You will receive more information in the first week of diagnosis than most people receive in a lifetime. It is impossible to remember it all.

  • The “Leukemia Notebook”: Buy a dedicated notebook (or use a specific app). Every time a doctor speaks, write it down. Every time you think of a question at 3 AM, write it down. Every time they change your meds, write it down.
  • Bring a Second Set of Ears: Never go to a major appointment alone. When you hear “cancer,” your brain often shuts down. A friend or family member can take notes and hear what you might miss.
  • Ask for Summaries: It is okay to ask your doctor to explain things in plain English or write down key terms for you.
  • Pro Tip: Ask your provider if you can record the appointment/meeting audio on your phone to refer back to later!
Download our free First Appointment Checklist with questions to ask your care team!

In closing, the most important thing to know is that you are not a statistic. Your journey is unique to your genetics, your body, and your fighting spirit, and no one fights alone! So gather your support team, apply for those grants immediately, take good notes, and take the treatment one day—sometimes one hour—at a time.

Gabby Sears was diagnosed with Acute Myeloid Leukemia and underwent induction chemo and an allogenic stem cell transplant in 2022. She is living her best life near Boston, and now serves as the Vice President of The Jackson Copeland Foundation, among other things. She is passionate about patient support and stem cell donor registrations.

gabby sears, the jackson copeland foundation