The Leukemia Support Center

Every person is unique, but when you face a challenge like leukemia, you are never alone. Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web to assemble links to the very best leukemia resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing.

As you’ll see, we always welcome your ideas and suggestions to make this Leukemia Crisis Guide even more helpful to survivors like you.

JUST FOUND OUT

Survivors Say: Best Resources for Leukemia

• Medline Plus - Leukemia This site hosts an interactive, user-friendly tutorial that can help you understand everything from symptoms and diagnosis to treatment options. If you've just been diagnosed and want to better understand the journey you're about to begin, this is a great starting point.
• National Cancer Institute - Leukemia Home Page The National Cancer Institute offers a readable, up-to-date guide featuring the latest thinking on treatment for the three most common types of leukemia, plus news on clinical trials. Check out their "What You Need to Know About Leukemia" booklet.
• The Leukemia & Lymphoma Society The Leukemia & Lymphoma Society not only features crucial information on the disease, but this organization also provides patients with services like call centers and discussion boards to help answer questions or for patients to talk with health-care professionals or other survivors. Ask about the society's financial support resources to help make costly treatment more affordable.

The Big Picture

Leukemia is a specific type of cancer that affects the body's production of blood cells, and whiite blood cells in specific. Leukemia-infected cells are not able to fight off infections like normal blood cells. The leukemia cells crowd out other healthy cells, making the body more vulnerable to disease and infection.

Leukemia affects nine of every 100,000 people in the US every year. The survival rate of leukemia patients varies, depending on the type of leukemia. However, overall, 42% of people live more than five years after diagnosis.

Once diagnosed, it's important that you understand the specifics in your case. Ask for a copy of your pathology report and read through each portion with your doctor to better understand your leukemia. For more information on what exactly a pathology report can tell you, visit this link:

Pathology Reports: Q&A - National Cancer Institute

For more on the most common signs and symptoms of leukemia, be sure to visit:

Leukemia: Signs and Symptoms

Your Leukemia

To better understand your specific case of leukemia, you'll want to find out the classification. At WebMD's Leukemia Overview you can learn more about each type:

Leukemia - Symptoms, Types, Causes, Diagnosis and Treatment Options for Leukemia

Since leukemia is a type of cancer, it is generally a good idea to get a second opinion. Read about how to find one and download guides with possible questions to ask your doctor about your treatment options:

Leukemia & Lymphoma Society - Making Treatment Decisions

After diagnosis, it's important to ask the right questions in order to begin doing everything you can to beat this disease:

American Cancer Society: What Should You Ask Your Doctor About Leukemia?

Your World

Don't be surprised if you're experiencing a flood of emotions now. It's important to talk with loved ones and reach out to support centers during the initial stages of your journey with leukemia. For advice on dealing with the many and varied emotions you may be feeling, check out the following link:

Finding Emotional Support

It can be difficult to know what to say to your family or friends after being diagnosed with leukemia; this article has good advice and may help put things into perspective:

How To Tell People You Are Ill | Telling Your Family About Cancer

Leukemia Myths

• Leukemia is only a childhood disease. Adults get leukemia, too
• Leukemia is hereditary. Is Leukemia Hereditary? - Health Question
• Leukemia is contagious. Leukemia Research Foundation

Information and Recommended Links for Survivors

• This Mayo Clinic site offers resources for coping with leukemia and finding support: Leukemia: Coping And Support - MayoClinic.com
• CancerCare is a national nonprofit organization offering free support for survivors and co-survivors, by phone or through one of their online support groups: CancerCare: Professional Support for People Affected by Cancer
• If you're looking for emotional guidance, check out this "community of support" for leukemia (CLL) and lymphoma patients and survivors at CarePages.com, a compendium of blogs by patients and those who love them: CarePages.com - Leukemia & Lymphoma
  

 

Types of Treatment

Chemotherapy

Chemotherapy is a form of drug treatment used to stop the spread of cancer cells in the body.

Leukemia & Lymphoma Society - Chemotherapy

Immunotherapy

Immunotherapy is treatment designed to strengthen the immune system, the body's natural defenses against infection and disease. There are many different kinds of immunotherapy, including antibodies and vaccinations, and they are sometimes used in conjunction with other treatments like chemotherapy.

Leukemia & Lymphoma Society - Immunotherapy

Radiation Therapy

Radiation therapy uses radiation to cause genetic damage in cancer cells, thereby preventing them from growing and replicating.

Leukemia & Lymphoma Society - Radiation Therapy (Radiotherapy)

Possible Treatment Side Effects

Treatment for any kind of cancer is a serious business and you may experience significant side effects. Be sure to talk to your doctor before beginning any course of treatment for leukemia so you understand the risks as well as the benefits. To learn about possible side effects for the most common leukemia treatments, visit the following resource:

Leukemia Side Effects - Treatment Information

New Therapies

Constant research has led scientists to develop therapies that could prove more effective than traditional treatments in curing leukemia. Educating yourself about the newest treatment options such as new vaccines, immunotherapy, and drug therapy could offer alternatives to discuss with your doctor when determining your treatment plan.

Leukemia & Lymphoma Society - New Approaches to Treatment

Holistic Treatments

Home Therapies

Some home treatments can assist in recovery from the side effects of chemotherapy and other treatments.

Leukemia - Home Treatment

Creating a support circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or set up your own.
• Interact and provide updates on your profile or our forums.

Insurance & Work Matters

Insurance Matters

To save money and time, find out what you need to know about health insurance coverage when you're undergoing treatment for leukemia. The answers will help reduce stress and fears about finances as you plan the treatment that's best for you.

Paying For Leukemia Treatment - Leukemia Treatment and Health Insurance

Work Matters

Learn about what you can expect from disability insurance as well as your employment rights as a leukemia patient and survivor in the National Coalition for Cancer Survivorship's booklet "Working it Out: Your Employment Rights as a Cancer Survivor":

Your Employment Rights As A Cancer Survivor

Health-Care Providers Who Can Help

Oncologists (cancer specialists) and hematologists (blood specialists) are the physicians who usually treat leukemia patients. Pediatricians who specialize in these areas typically treat children with leukemia. Health-care coverage plans will refer you to these professionals for a consultation. After the consultation, the team of health-care professionals caring for you may include other physicians, nurses, social workers, case managers, and nutritionists, each of whom will assist in different ways in your recovery.

For a list of types of physicians and how each can help you in treating your leukemia, follow this link:

Doctors and Medical Specialists for Leukemia

Resources to Find Doctors

• Choosing and Communicating with a Cancer Specialist Leukemia & Lymphoma Society - Choosing and Communicating with a Cancer Specialist
• How to Find a Doctor or Treatment Center How to Find a Doctor or Treatment Facility - National Cancer Institute
• Search Cancer Centers National Cancer Institute - Designated Cancer Centers

The Emotional Rollercoaster

Surviving with leukemia is a challenge for everyone diagnosed with the disease. Some people find that dealing with leukemia emotionally is more difficult than the physical or medical aspects of being ill. As much as you're able, try to continue living your life normally, participating in the same daily activities you've always done. Joining a support group can also be important to maintaining a healthy emotional state, as is educating yourself about the disease and reading the stories of those who have successfully battled leukemia.

Books Survivors Recommend

• Gideon's Gift: A Novel
• Sadako and the Thousand Paper Cranes
• Surviving Leukemia: A Practical Guide
• The Time Capsule

Communicating with Your Health-Care Providers

Bring a friend or family member with you to your appointments, not only to provide support but to lend an extra ear. It can be difficult to really hear, understand, and remember everything your health-care provider has to say. Your advocate can help with this.

Don't be afraid to ask any questions you feel you need the answer to, even if you may be scared of the answer or fear it's an obvious question. You need all the information you can get to help you fight this disease and make the choices that are right for you.

Write down any questions you have ahead of time and jot down the answers as your health-care provider walks you through them. Don't be afraid to ask for clarification on anything.

Dealing with Leukemia: Information for Co-Survivors

How you can help

• Assist your friend or family member with their day-to-day duties or chores, but don't try to do everything for them. It's important for survivors to keep up with their usual daily routine as much as possible.
• Don't assume your friend or family member can't participate in his or her usual daily activities or decisions. It's normal to feel protective but when you don't see them as fit enough to contribute it can add to their feelings of helplessness.
• Involve your friend or family member with others. Don't focus exclusively on their disease and treatment plan when interacting with them. Talk to them about yourself or make plans to visit friends and loved ones. A survivor involved with others has a better chance of avoiding feelings of abandonment and self-pity.

What to say

• When making treatment decisions, say, "I will support the treatment plan you choose and any doctor or hospital you choose to go to."
• If you think something is wrong, ask, "Do you want to talk about it?"
• Tell your friend or family member how much you care about them.

What not to say

• "Don't worry, we'll find a way to make this all go away."
• "We'll go to every hospital and spend as much money as it will take to get you well."
• "You won't have to lift a finger; I'll do everything for you."

Things you can do for a survivor every day

• Offering day-to-day support is a great gift to a family member, friend or neighbor with leukemia. You can also help out the patient's family when they're away at the hospital or staying in a hotel for treatment by picking up their mail or newspaper, making meals, offering child or pet care, going grocery shopping, or by helping with chores and yard work they may have fallen behind on.

How to build a support network

• Set up your TSC co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates

How to help a survivor deal with day-to-day challenges

• Preparing the School for Your Child with Leukemia: Preparing the School for Your Child With Leukemia
• Tips on Returning to Work After Cancer Treatment: American Cancer Institute - Tips on Returning to Work After Cancer Treatment

After you've finished treatment and are in recovery, it may be a good time assess how you feel emotionally, mentally, and spiritually and perhaps share this with others close to you. Recovering from a disease like leukemia can be almost as shocking as hearing the diagnosis, in that you have finished treatment and may want to go back to a "normal" life, but you may feel that you're not the same person you were before. By telling your story you can not only put into perspective your thoughts and feelings but you may provide hope to others going through a similar journey, whether it be with leukemia, another form of cancer, or a completely different disease.

Remission / Recovery / Recurrence

Dealing emotionally with remission of leukemia can be difficult --you may still feel uncertain about whether you're really completely cured, and whether you'll relapse in the future. Check out this site to find doctors' and patients' views of remission:

Leukemia & Lymphoma Society - Bill Buchholz

Since leukemia has no proven risk factors or causes patients are left with little to help them prevent a relapse. But survivors should be sure to schedule regular visits with a doctor after finishing treatment to catch a recurrence early, should one appear.

Check out this site for steps to take if you have a leukemia relapse; you'll find emotional support, along with advice on the differences in treatment when there's a relapse versus an initial diagnosis:

When Cancer Returns - National Cancer Institute

Leukemia survivor Robert Brown shares his experience of treatment and recovery on his blog:

Leukemiasurvivor.com

Give Back

What helped you when you were dealing with the diagnosis, undergoing treatment, or moving into recovery? Take a look back at your journey and share with others what helped you and what you wished you would have known/done during your experience with leukemia. You can create a profile, reach out to other survivors, join support circles, or share your story at The Survivors Club. Check out some of the best charities for supporting leukemia research or offering support to survivors:

Leukemia Charities

• Dealing with the possibility of a terminal illness is so difficult and unthinkable that many patients and families find they are unprepared when the worst case happens. Here's how to cope if you find your leukemia is terminal: Coping With Terminal Cancer
• The Leukemia and Lymphoma Society offers advice on dealing with the most difficult topic of all, end-of-life issues, and finding help emotionally, physically, spiritually, legally, and financially, and how hospice can help. For advice on overcoming challenges related to death for survivors and co-survivors, go here: Leukemia & Lymphoma Society - End-Of-Life