MPN Resources

These resources were originally published by MPN Cancer Connection here.

Resources

One of the first recommendations for the newly diagnosed is to see an MPN Specialist. This also applies to patients who have never seen an MPN Specialist. Financial difficulties can make this a difficult task. Before you begin treatment, patients and caregivers should meet with a financial counselor at the facility providing treatment. The counselor will assist in determining coverage and estimate out of pocket expenses. You might also consider an Oncology Nurse Navigator who helps provide support services, coordinates elements of care and helps you learn about additional cancer resources.

Connect with Myeloma Groups

This resource was originally published by Myeloma Crowd here.

CONNECT WITH THE MYELOMA CROWD

Myeloma Crowd is a division of the CrowdCare Foundation and is a registered 501(c)3 non-profit, tax ID 45-5354811. Contact us at info@crowdcare.org. For donations, please donate online to the MCRI project here or mail checks to:

CrowdCare Foundation
PO Box 1286
Draper, UT 84020

 

JOIN MYELOMA FACEBOOK GROUPS

MULTIPLE MYELOMA SPANISH SITE

Financial Assistance Programs

These resources were originally published by Myeloma Crowd here.

Financial Resources

Before starting treatment, patients and their caregivers should meet with the financial counselor at the facility where they will be treated. Each hospital will have its own financial counselor within each specific clinic (like the myeloma clinic or myeloma/lymphoma clinic). The counselor will help determine coverage and estimate out of pocket costs. There may be restrictions on treatment options covered by Medicare and Medicaid. After you have met with the counselor, the resources below can help bridge financial gaps.

Myeloma advocate and financial planner Diahanna Valentine helped compile this list of helpful financial resources. To contact Diahanna for professional assistance, email her at dtvallentine@gmail.com

Pharmaceutical Company Patient Assistance Programs

Amgen Assist 360  (1-800-28-AMGEN) (Kyprolis, Xgeva, Neupogen, Neulasta)

BMS Access Support (1-800-861-0048) (Empliciti)

Celgene Patient Support (1-800-931-8691, EXT 4077(Revlimid, Pomalyst, Thalomid)

Genentech  (1-888-941-3331) (Venclexta)

(800-609-1083) (Doxil, Darzalex)

Novartis Patient Assistance (1-800-245-5356) (Farydak, Zometa)

Takeda Oncology (1-844-817-6468) (Ninlaro, Velcade)

Other Patient Assistance Programs

Be The Match (Post-transplant financial assistance)

CancerCare

CephalonCares Foundation

HealthWell Foundation

Help with Paying Bills

The Leukemia & Lymphoma Society’s Co-pay Assistance Program

Patient Financial Aid

The Max Foundation

National Cancer Institute

National Organization for Rare Disorders

NeedyMeds

Patient Access Network Foundation

Patient Advocate Foundation

Patient Advocate Foundation Co-Pay Relief Program

Ronald McDonald House Charities

Basic Living Expenses

American Childhood Cancer Organization

American Life Fund
The Bone Marrow Foundation

The CHAIN Fund Inc

Child Care Expenses

Family Reach Foundation

The Bone Marrow Foundation

CancerCare

Equipment /Supplies Expenses

American Kidney Fund

CancerCare

Lymphoma Research Foundation

Stupid Cancer

Government Assistance

Benefits.gov

Centers for Medicare & Medicaid Services

Eligibility.com (Medicare Resources)

Legal Services Corporation

Social Security Administration

Social Security Disability Resource Center

U.S. Department of Veterans Affairs

Home Health Care Assistance

AVON Foundation for Women

The Bone Marrow Foundation

CancerCare

Brenda Mehling Cancer Fund

Stupid Cancer

Housing During Treatment

American Cancer Society (Hope Lodges)

The Bone Marrow Foundation

Healthcare Hospitality Network Inc

Hospitality Homes

Joe’s House

Lymphoma Research Foundation

Insurance Premium Expenses

American Kidney Fund (dialysis patients)

American Life Fund

The Bone Marrow Foundation

CancerCare Co-Payment Assistance Foundation

The CHAIN Fund Inc

Fifth Season Financial Assistance

HealthWell Foundation (diagnosis-specific)

Patient Advocate Foundation Co-Pay Relief

Patient Services, Inc

Stupid Cancer

Legal Issues

American Bar Association

Cancer and Careers

Cancer Legal Resource Center

LawHelp.org

Legal Services Corporation

National Coalition for Cancer Survivorship

National Health Law Program(links to assistance programs)

Patient Advocate Foundation

Social Security Disability Resource Center

Medical Care Expenses

American Life Fund

Be the Match

The Bone Marrow Foundation

CancerCare

Cancer Warrior, Inc

Fifth Season Financial Assistance

Foundation for Health Coverage Education

Leukemia and Lymphoma Society

Patient Access Network Foundation

Patient Advocate Foundation

Post-Treatment Financial Needs

Be The Match

Stupid Cancer

Prescription Expenses

The Bone Marrow Foundation

CancerCare Co-Payment Assistance Foundation

Cancer Financial Assistance Coalition

The CHAIN Fund Inc

Foundation for Health Coverage Education

GoodDays

HealthWell Foundation

The Leukemia & Lymphoma Society

Needy Meds

Patient Access Network Foundation

Patient Advocate Foundation Co-Pay Relief

RxAssist

RxHope

RxOutreach

Together Rx Access

Transportation and Travel Resources

Angel Flight

Air Charity Network

American Cancer Society (Road to Recovery)

Angel Airline Samaritans

Angel Airlines for Cancer Patientsrg

Angel Flight Central

CancerCare

Chai Lifeline

Corporate Angel Network

Family Reach Foundation

Lifeline Pilots

Lymphoma Research Foundation

Mercy Medical Angels

National Patient Travel Center

Veterans Airlife Command

Know What Your Doctors Know: Multiple Myeloma

This video was originally published by the National Comprehensive Cancer Network on April 15, 2019, here.

Experts discussed updates in the treatment of multiple myeloma during live webinars hosted by the National Comprehensive Cancer Network (NCCN) on April 15 and 16, 2019.

Care Coordination for Your Loved One Living with Cancer and Other Health Problems

This podcast was originally published by Cancer Care.org on June 17, 2019, here.

 

 

Topics Covered

  • Overview of Cancer & Co-Morbidities
  • The Role of Caregivers in Care Coordination for People Living with Cancer & Co-Morbidities
  • Tips for Communicating with the Health Care Team about Care Coordination
  • Challenges of Coordinating Your Loved One’s Care & Follow-Up Appointments
  • Adherence – Taking Pills on Schedule
  • Lead time in Refilling Prescriptions & Planning for Visitors, Weekends, Special Occasions, Travel & Holidays
  • Resources for the Costs of Care, including Homecare
  • Finding the Practical Help You Need: Co-Pay Foundations & Federal, State & Local Programs
  • Legal Advocacy Tips for Caregivers
  • Learning How to Appeal Insurance, Medical, Medicaid & Provider Denials
  • Other Resources, VA Benefits & Family Medical Leave Act/FMLA
  • Tips on Choosing Community & Medical Resources to Improve Your Quality-of-Life
  • Time Saving Self-Care/Self-Advocacy Tips for Caregivers
  • Questions for Our Panel of Experts

Our Panel of Experts

Stewart B. Fleishman, MD

Former Founding Director, Cancer Support Services, Continuum Cancer Centers of New York, Author, Researcher in Oncology

Guadalupe R. Palos, RN, MSW, DrPH

Clinical Protocol Administrative Manager, Office of Cancer Survivorship, The University of Texas MD Anderson Cancer Center

Debra J. Wolf, Esq.

Senior Supervising Attorney, LegalHealth, New York Legal Assistance Group (NYLAG)

Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW

Director of Education and Training, CancerCare

Deciphering My Lab Results

This resource was originally published by Myeloma Crowd here.

We thought it might be helpful to have a document that describes your multiple myeloma test lab results and helps identify the important markers. This document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance.

 

Download It Here:

DECIPHERING MY MYELOMA LAB RESULTS

Managing Out of Pocket Expenses for Melanoma

This video was originally published by Cancer Support Community on August 24, 2015, here.

 

Lung Cancer: Coping With Unexpected Challenges

This video was originally published by Cancer Support Community on August 13, 2015, here.

Encore: Facing a Lung Cancer Diagnosis

This podcast was originally published by Cancer Support Community on November 17, 2015, here.

“Being empowered is choosing to adopt actions, behaviors, and attitudes that can help you regain a sense of control over your treatment and life with cancer,” excerpt from Frankly Speaking About Cancer: Lung Cancer. Part of being empowered means learning all you can about your specific type of cancer—what it is, how it affects your body, how it’s treated and what you can expect during diagnosis, treatment and beyond.

 

Know What Your Doctors Know: Non-Small Cell Lung Cancer

This video was originally published by National Comprehensive Cancer Network on December 17, 2018, here.

CLL: Risk, Research, and Resources

This podcast was originally published by The Bloodline With LLS on January 22, 2019, here.

Join Alicia and Lizette from The Leukemia and Lymphoma Society as they speak with Dr. Ann LaCasce, Program Director of the Dana-Farber/ Partners CancerCare Fellowship, the largest hematology/oncology training program in the country. On this episode, Dr. LaCasce explains the difference between chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL), CLL and its connection with Agent Orange exposure, resources available for Veterans, current and emerging therapies, clinical trials and the importance of medication adherence. Dr. LaCasce shares her excitement for what is to come for CLL treatment and her appreciation for fellow providers around the world, who work to move science forward as they continue to learn from each other.

Ann LaCasce, MD

Current Perspectives on the Treatment of Relapsed/Refractory Chronic Lymphocytic Leukemia (CLL)

This podcast was originally published by CancerCare on June 20, 2019, here.

Listen Now

Topics Covered

  • Review of CLL
  • Significant Role of Testing in Informing Your Treatment Choices
  • First Line Treatment Options
  • Treatment of Relapsed/Refractory CLL
  • Importance of Re-Testing in Determining Treatment for 2nd and 3rd Line Treatments
  • Current Perspectives on New & Emerging Treatments for CLL
  • Key Questions to Ask & Re-Ask Your Health Care Team
  • Practical & Psychosocial Support to Cope with CLL
  • Questions for Our Panel of Experts

Our Panel of Experts

Alexey V. Danilov, MD, PhD

Associate Professor of Medicine, Knight Cancer Institute, Oregon Health & Science University (OHSU)

Lindsey E. Roeker, MD

Hematology/Medical Oncology Fellow, Department of Medicine, Memorial Sloan Kettering Cancer Center

Patricia Koffman

Co-Founder and Executive Director, CLL Society Inc.

Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW

Director of Education and Training, CancerCare

Test Before You Treat

Valerie share’s her story for AML Awareness Month

This video was originally published by CancerCare on June 17, 2016, here.