Chronic Myeloid Leukemia: A Patient's Journey



Leukemia Resources to Help Patients and Families Cope

If you’ve recently been diagnosed with leukemia, it’s important that you and your family have access to resources that can help you understand, cope with, and recover from your condition. Here are Everyday Health’s most recommended organizations, articles, and websites that provide information and support.

Organizations

Children’s Leukemia Research Association: 516-222-1944. The Children’s Leukemia Research Association raises funds for leukemia research and provides financial aid to leukemia patients for medication, lab fees, and other expenses not covered by insurance.

Cancer Support Community: 202-659-9709. As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people affected by cancer are empowered with knowledge, strengthened by action, and sustained by community.

: 888-557-7177. The Leukemia & Lymphoma Society (LLC) is the largest voluntary health organization dedicated to funding research, finding cures and ensuring access to treatments for blood cancer patients. Its mission is to cure leukemia and other cancers and improve the quality of life of patients and their families.

Hairy Cell Leukemia Foundation: 224-355-7201. Hairy Cell Leukemia Foundation seeks to improve outcomes for patients by advancing research into the causes and treatment of hairy cell leukemia. It also provides educational resources to those affected by hairy cell leukemia.

American Cancer Society: 800-227-2345. The American Cancer Society offers resources, news, and online support groups for people with leukemia.

T-Cell Leukemia Lymphoma Foundation: 206-661-2253. T-Cell Leukemia Lymphoma Foundation is a nonprofit organization that provides education about T-cell leukemia and lymphoma to patients and family members.

MyLifeLine Cancer Foundation: 888- 793-9355. After a recent merge with Cancer Support Community, MyLifeLine seeks to empower cancer patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites.

Financial Assistance

Cancer Financial Assistance Coalition: The coalition helps cancer patients manage their financial challenges by educating patients and providers about resources. It also advocates for cancer patients regarding the financial burdens of cancer care.

Leukemia & Lymphoma Society: 888-557-7177. The LLS Helps cover prescription drug, copay assistance, and stem cell transplant costs.

: 602-279-9474. Tens of thousands of volunteers, donors, and supporters allow Make-A-Wish to grant every child diagnosed with a critical illness the wish of his or her dreams.

CancerCare: 866-552-6729. CancerCare offers limited financial and copay assistance, as well as the option of having a professional oncologal social worker find you additional resources. They also have an online database that helps you find doctors and a range of assistance.

PAN Foundation: 866-316-7263. Patient Access Network (PAN) Foundation is an independent nonprofit organization that seeks to help federally and commercially insured people with chronic or life-threatening diseases with some costs of their prescription medications.

Children’s Cancer Research Fund: This organization conducts research and provides funding for the latest research for leukemia in children. It also offers family support services and advocates for childhood cancer education and awareness.

NeedyMeds: 800-503-6897. A resource for information for those who can't afford medicine or other healthcare expenses. NeedyMeds offers programs such as assistance for specific diseases and conditions, application assistance, state-sponsored programs, and Medicaid sites.

Healthwell Foundation: 800-675-8416. This foundation provides financial assistance to eligible individuals for coinsurance, copayments, healthcare premiums and deductibles for certain medications and therapies.

Coping, Advocacy, and Support

CML Advocates Network: The goal of CML is to facilitate and support best-practice sharing among patient group organizers across the world. CML provides a World Wide Web directory of CML patient groups that allows patient groups to find national support groups.

CancerCare: 800-813-HOPE ext. 4673. CancerCare offers free online, telephone, and face-to-face services for those with leukemia and a range of cancers. Their services include individual counseling and support in groups.

MPN-Net: The MPN Education Foundation offers online and face-to-face support groups that provide disease, treatment, and clinical trial information. It serves patients with chronic myeloid leukemia and a range of myeloproliferative neoplasms.

Resources 4 Leukemia: This site offers links to a list of cancer support groups. It also offers information about symptoms, diagnosis, treatment, and the latest news on leukemia.

MyLifeLine: 888-793-9355. MyLifeLine offers a practical list of support groups, as well as other resources such as a caregiver toolkit, financial assistance, side effect management tips, and a cancer resources directory.

Facts & Statistics

Medications and Therapies

Patient and Community Blogs

Running for My Life: Ronni Gordon discovered something wrong during a 10K run in 2003. Though she no longer has leukemia, Ronni continues to document her chronic side effects.

Learning From and About Cancer: Family doctor Brian Kauffman was diagnosed with leukemia and writes about new developments in blood cancers.

Trees of Hope: At age 25, Vanessa Hood was diagnosed with Philadelphia-positive acute lymphoblastic leukemia. Vanessa Hood and Karen Wenzel write about Hood’s journey with leukemia.

Clinical Trials

NIH: ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. Explore 272,882 research studies in all 50 states and in 203 countries.






Video: Cellular Immunotherapy to Treat Leukemia & Lymphomas: Top 10 Medical Innovations 2017

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Date: 12.12.2018, 23:26 / Views: 34563