How will I be supported?

Helpful tools and resources are right here

You won't have to go far to receive multiple myeloma treatment support because there are helpful resources right here on NINLARO.com. Maybe you could use a hand staying on track with treatment or maybe you need help starting a conversation with your doctor. This section includes a dosing calendar, conversation starter, and other tools to help you on your journey. Take a look through the support offerings and see what's possible!

Hear from others who may be going through a similar experience. Find a patient support event near you.

There's so much info out there for multiple myeloma; starting treatment can be daunting. These resources have given me the tools I need to stay on track with my treatment.

Healthcare team conversation starter

Get the most out of your visits by working
together with your healthcare team

Remember, you are not alone in treatment. Your doctor and nurses, along with your caregiver, are your number 1 resources for any questions or concerns you may have about NINLARO® (ixazomib) and multiple myeloma. By working together and following these helpful tips, you may be able to get the most out of your time with your healthcare team.

  • Create a partnership with your healthcare team that has clear lines of communication
  • Establish trust by having open discussions and making treatment decisions together
  • Prepare for your visit by tracking symptoms and potential side effects in your NINLARO planner
  • Ask questions if you're uncertain. There's no such thing as a silly question
  • Take notes during your visit
  • Review this discussion guide prior to your visit for a productive conversation

Common questions to discuss with your healthcare team

Starting a new treatment for multiple myeloma can be overwhelming. You may be concerned about how the treatment will affect your lifestyle, impact you financially, or you may have questions about what to expect. Review the questions below in preparation for your next doctor’s appointment to help you get the most out of your visit. You can also print these questions and write down any additional thoughts to make sure any concerns are addressed.

General questions
  • What are the goals of this treatment?
  • These are the medications and supplements I am currently taking (be prepared with a list). Do these affect my treatment, and how? 
  • Can you help me understand how this treatment works?
  • How often is treatment administered? For how long is treatment administered? What ways is treatment administered?
  • How effective is the treatment you're recommending?
  • How will I know if my multiple myeloma is responding to treatment?
  • What does it mean if I achieve remission?
  • How often will I need to come into the office?
  • Can I make plans to travel?
  • Are there patient support groups that you might recommend?
Questions about lab work and tests
  • What typical tests and scans will I need?
  • How often do I need them?
  • What tests/results should I keep track of?
  • Can you explain the results of my tests?
Questions about taking the all-oral NINLARO® (ixazomib) regimen (NINLARO+lenalidomide+dexamethasone)
  • How will I remember to take my medication?
  • How should I store my medication?
  • What if I forget to take a capsule?
Questions about side effects
  • What are the side effects of treatment?
  • Are there signs or symptoms I should look out for?
  • Should I expect any new or worsening symptoms at this point in my treatment?
  • What should I do if I experience any side effects? How can they be managed?

Multiple myeloma glossary

Common terms you may come across during multiple myeloma treatment

As you have conversations with your healthcare team and make treatment decisions together, reference this glossary to better understand medical terms.

ANEMIA: A low level of red blood cells or hemoglobin. This condition can cause a number of symptoms, including shortness of breath, weakness, and fatigue.

ANTIBODIES: Special proteins made by certain white blood cells (plasma cells and B cells) that fight infection and disease.

BONE MARROW: The spongy inner part of bones where blood cells are made.

CLINICAL TRIAL: The testing of a new medical treatment on a selected disease population. It helps determine if the treatment is safe and effective enough to be offered to the larger population with that disease. Clinical trials are often done in phases.

COMPLETE RESPONSE (CR): When there are 5% or fewer plasma cells in the bone marrow and lab tests show no myeloma proteins.

DEXAMETHASONE: A steroid medication that is similar to a chemical produced by the adrenal glands and is used to treat many conditions, including certain types of blood cancers.

EDEMA: Swelling caused by excess fluid in body tissues.

HEMOGLOBIN: A protein in red blood cells that carries oxygen in the blood to all parts of the body.

HYPERCALCEMIA: A level of calcium higher than normal in the blood. This condition can cause many symptoms, including loss of appetite, nausea, thirst, fatigue (tiredness), muscle weakness, restlessness, and confusion.

LENALIDOMIDE: A drug that may help the immune system kill abnormal blood cells or cancer cells.

M PROTEIN: An abnormal antibody found in unusually large amounts in the blood or urine of many people with multiple myeloma and other types of plasma cell tumors. Also called monoclonal protein.

MAGNETIC RESONANCE IMAGING (MRI): A technique that uses a large magnet and radio waves to look at organs and structures inside your body.

MEDIAN: The middle number in a set of data. In other words, half of the numbers in the group are more than the median and half of the numbers in the group are less than the median.

MULTIPLE MYELOMA: A cancer of the plasma cells (white blood cells that produce antibodies).

MYELOMA CELLS: Cancerous plasma cells.

NEUROTOXICITY: A disease symptom or treatment-related side effect that can cause damage to the nervous system.

NEUTROPENIA: A condition in which there is a lower-than-normal number of neutrophils (a type of white blood cell).

OVERALL RESPONSE RATE (ORR): A percentage of patients with a partial response or better in a clinical trial.

PARTIAL RESPONSE (PR): A greater than 50% decrease in M protein, also called partial remission.

PERIPHERAL NEUROPATHY (PN): A condition that causes tingling and burning in the hands or feet. It can be caused by issues with metabolism, infections, injuries, and exposure to drugs or toxins.

PLACEBO: An inactive pill, often called a "sugar pill," that may be given in clinical trials to compare the effects to the active drug.

PLASMA CELL: Special white blood cells that produce a specific antibody.

PLATELETS: A type of blood cell that helps prevent bleeding by causing the blood to form clots at the sites of blood vessel injuries (internal and external).

POSITRON EMISSION TOMOGRAPHY (PET) SCAN: A technique that uses a mild radioactive marker to reveal the locations of cancer cells in different parts of the body.

PROGRESSION-FREE SURVIVAL: The length of time during and after treatment that a patient lives with the disease but it does not get worse.

PROTEASOME: A part of a cell that breaks down unneeded proteins.

PROTEASOME INHIBITOR (PI): A drug that blocks the action of proteasomes.

PROTEIN: A molecule made up of amino acids and are needed for all cells in the body to function properly.

RED BLOOD CELLS: Cells that carry oxygen to all parts of the body.

REFRACTORY: When cancer is resistant to treatment.

RELAPSE: The return of a disease or symptoms after a period of improvement.

SHINGLES: A disease caused by the varicella-zoster virus—the same virus that causes chickenpox.

STABLE DISEASE: Cancer that is neither decreasing nor increasing in extent or severity.

STEM CELL: An early cell that matures into various types of cells in the body.

STEM CELL TRANSPLANT: A procedure that infuses healthy cells into your body to replace damaged or diseased bone marrow. These injected stem cells make healthy blood cells. Cells from your own body (autologous transplant) or from a donor (allogeneic transplant) may be used.

THROMBOCYTOPENIA: A condition in which there is a lower-than-normal number of platelets in the blood. It may result in easy bruising and excessive bleeding from wounds or bleeding in mucous membranes and other tissues.

VERY GOOD PARTIAL RESPONSE (VGPR): A greater than 90% decrease in M protein. Also called very good partial remission.

WHITE BLOOD CELLS: Formed mainly in the bone marrow, these cells help protect the body from infection and disease.

Helpful tools for your multiple myeloma treatment journey

Conversation starter

This guide includes jumping-off points for your conversation and helpful tips to have the most effective conversation with your healthcare team. Review this before each doctor's appointment.

Lab test tracker

A comprehensive tool that includes a worksheet that can help you record and better understand your lab tests.

Blank treatment calendar

Use this calendar each month to keep track of your treatment schedule and when you are taking your medicine.

Package instructions

Step-by-step instructions to help you safely and efficiently open the NINLARO® (ixazomib) packaging.

The Medisafe App

Stay on track with your medications with the Medisafe app built for NINLARO patients.

 

Takeda Oncology is not affiliated with Medisafe, does not endorse any particular service, and is not responsible for the content of these sites or services. Resources are provided here for informational purposes and are not meant to replace your healthcare provider’s medical advice.

Videos

Real patients, real experiences

Real patients, real experiences: Gail

Gail and her sister Paulette share their experiences of living with multiple myeloma as patient (Gail) and caregiver (Paulette). They discuss the decision Gail and her doctor made to try the NINLARO regimen.

Real patients, real experiences: Daryl

Daryl discusses how his journey with multiple myeloma has shaped not only his mindset, but also how he works with his heathcare team.

Real patients, real experiences: Jennifer

Learn about Jennifer's mutiple myeloma journey and her personal experience with the NINLARO regimen.

Real patients, real experiences: Deborah

Deborah shares her experience with multiple myeloma and her experience taking the NINLARO regimen.

Real patients, real experiences: Staying on treatment

Learn about the routines that Scott and Amy developed while taking the NINLARO regimen to help them remember to take their treatment.

Learn from a nurse practitioner (NP)

Hear from an NP: What is multiple myeloma?

Hear Kathleen Clifford, a heathcare professional, explain what multiple myeloma is and how it is diagnosed.

Hear from an NP: What is NINLARO?

Learn about the NINLARO regimen, an effective treatment for individuals with previously treated multiple myeloma.

Hear from an NP: Taking NINLARO

Learn how it is recommended to take the NINLARO regimen as a potential multiple myeloma treatment.

Learn more about NINLARO

Learn how to safely open the NINLARO packaging

Discover how to open the NINLARO packaging correctly and easily.