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MY FOLLICULAR LYMPHOMA
COACH

My Follicular Lymphoma Coach helps you prepare for your next discussion with your healthcare team by providing you with customized information based on your unique situation. Whether you are someone living with follicular lymphoma or are caring for someone with it, fill out the questionnaire for important information and resources personally tailored to where you are in your journey. You can share this report with your healthcare provider to help inform your next steps.

Here are some helpful hints to keep in mind as you move forward:

  1. For your privacy, we do not save any of your information, so be sure to download, save, and/or print the report.
  2. If you leave or close out of the questionnaire you will lose your place and need to start over.
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Question 1 of 6

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    (select one or more)

    Please choose an answer for Question 1.


    Back

    Please choose an answer for Question 2.

    What are common symptoms of follicular lymphoma? Toggle

    • Many patients have no obvious symptoms at diagnosis, but some common symptoms include:
      • Painless, swollen lymph nodes in the neck, armpit, or groin
      • Abdominal or chest pain
      • Persistent fatigue
      • Shortness of breath
      • Fever, night sweats, or unexplained weight loss

    Download our symptom tracker to help you keep track of any symptoms you may want to discuss with your healthcare provider.

    How is follicular lymphoma diagnosed? Toggle

    A diagnosis of follicular lymphoma is made following a biopsy of a patient’s lymph node tissue and may also include additional tests, such as blood tests, and/or advanced imaging to determine if the disease has spread to other parts of the body.2


    Back

    Please choose an answer for Question 3.

    What are the diagnostic tools for follicular lymphoma? Toggle

    Your healthcare provider may use blood tests, biopsies, specialized imaging tests, bone marrow examination, and/or other tests to diagnose follicular lymphoma.2

    What is a pathology report? Toggle

    • A pathology report is a document that contains the diagnosis determined by examining cells and tissues under a microscope.3
    • Your pathology report can include the diagnosis of the type of cancer, the tumor grade, the stage, the lymph node status, and any other test results.4
    • In some cases, after a person has been diagnosed with cancer, a healthcare provider will do tests on a sample of cancer cells to look for certain gene changes. These tests can sometimes give information on a person’s outlook (prognosis) and help tell whether certain types of treatment might be useful.16

    What is an imaging report? Toggle

    • Imaging tests can be used to look for cancer, to find out how far it has spread, and to help see if cancer treatment is working.5 A radiologist will examine and interpret the images and share a report with your healthcare provider.6
    • Your imaging report can show you what changes may have occurred in your body that are caused by the disease.5


    Back

    Please choose an answer for Question 4.

    What does my cancer stage mean? Toggle

    The stage of lymphoma describes where in the body the lymphoma is located. It is important to remember that even stage IV (the most advanced) lymphomas can often be treated successfully.7

    How is my cancer stage determined? Toggle

    Healthcare providers use diagnostic tests, such as biopsies and imaging, to find out the cancer’s stage, so official staging may not be confirmed until all of the recommended tests are finished.7

    Where can I find my cancer stage? Toggle

    Your healthcare providers will help you find your stage by conducting diagnostic tests, including biopsies or imaging.7


    Back

    Please choose an answer for Question 5.


    Back


    Back

    (select one or more)

    Back

    Please choose an answer for Question 6.

    Your Personalized Follicular Lymphoma Treatment Guide

    By completing the questionnaire from My Follicular Lymphoma Coach, you have received a personalized discussion guide that may be a helpful tool for your next discussion with your healthcare provider. Reminder, this website does not save your report, so you must download, save, and/or print it using the buttons above.

    In My Blood

    Based on your responses to the questionnaire, you’ve indicated:

    Stage

    Stage X

    Treatment Experience

    Should you need to consider additional treatment choices in the future, you may wish to discuss these options with your healthcare provider:

    Treatment Options

    • Clinical Trials: Clinical trials test the efficacy and safety of potential new medicines and may be a way to access the newest treatments prior to them being approved.14 Talk to your healthcare provider about clinical trials and you can search for active follicular lymphoma trials at ClinicalTrials.gov. Additional support services for clinical trials are offered by the Lymphoma Research Foundation and the Leukemia and Lymphoma Society.
    • First-Line Treatment (1L): First-line treatments can often include multiple medicines, and options for first-line regimens can depend on your age and health.14 Share your experience with your healthcare provider, and ask about the following options:
      • Antibody treatment: Antibodies are proteins in the immune system that help fight harmful pathogens. Monoclonal antibodies are manmade antibodies that can treat follicular lymphoma by marking the cells so that your immune system can find and destroy them, and they can also directly kill cells.14
      • Chemoimmunotherapy: Chemoimmunotherapy is a term to describe the combination of chemotherapy with an antibody treatment.14
      • Chemotherapy: Chemotherapy is a cancer treatment that stops the growth of cancer cells either by killing the cells or by stopping them from dividing. Chemotherapy is taken by the mouth or injected into a vein so the treatment can reach the cancer cells through the blood stream.11
      • Involved-site radiation therapy (ISRT) for cancers stage I or II: Involved-site radiation therapy is a form of radiation therapy on a limited area. Radiation therapy works by using high energy x-rays to damage the DNA in cancer cells to destroy the cells or stop new cancer cells being formed.14
    • Follow-Up and Supportive Care: The purpose of supportive care, sometimes called palliative care, is to improve quality of life. It’s important to understand this is not just for those at the end of life, and it can prevent or relieve emotional and physical symptoms.14 Additionally, after first-line or second-line treatment, maintenance treatment may be recommended by your healthcare provider in an effort to increase the amount of time until your cancer may come back.14 Continue regular checkups with your healthcare provider, and ask about supportive care available to you.
    • Second-Line Treatment (2L): Second-line treatments are used for those who experienced their cancer returning (known as relapse) or become resistant to a previously prescribed medication (known as refractory). Second-line treatment may consist of one or more medicines. Options offered by your healthcare provider will depend on your level of fitness, prior treatment, and length of relapse.14 Share your experience with your healthcare provider, and ask about the following options:
      • Antibody treatment: Antibodies are proteins in the immune system that help fight harmful pathogens. Monoclonal antibodies are manmade antibodies that can treat follicular lymphoma by marking the cells so that your immune system can find and destroy them, and they can also directly kill cells.14
      • Chemotherapy: Chemotherapy is a cancer treatment that stops the growth of cancer cells either by killing the cells or by stopping them from dividing. Chemotherapy is taken by the mouth or injected into a vein so the treatment can reach the cancer cells through the blood stream.11
      • *An EZH2 inhibitor: An EZH2 inhibitor is an oral nonchemotherapy medicine that is designed to target and block the EZH2 gene. When the EZH2 gene is overactive it plays a key role in causing follicular lymphoma in all patients.14
        • *Approved for adult patients with relapsed or refractory follicular lymphoma who have no satisfactory alternative treatment optionsbased on physician discretion.19
      • Immunomodulator therapy: Immunomodulators are drugs that modify parts of the immune system.14
      • Kinase inhibitor: Kinases are part of chemical pathways within cells, some of which control cell growth. Kinase inhibitors change the action of the proteins by attaching phosphates to them, stopping cancer growth.14
      • Radioimmunotherapy: Radioimmunotherapy is a type of radiation therapy that uses a radioactive substance attached to a monoclonal antibody, or a manmade antibody, which then binds to cancer cells. The radioactive substance will give off radiation to kill the cancer cells.11
    • Signs of Relapse: Signs of a relapse could include symptoms similar to those you may have experienced when you were diagnosed, such as new, rapidly growing nodes or symptoms such as night sweats, fevers, and weight loss. Monitoring and tracking for any new symptoms of relapse is very important. Please find a seven-day symptom tracker here. Talk with your healthcare provider about how to actively monitor for a relapse.
    • Third-Line and Beyond Treatment (3L+): Third-line and beyond treatments are given when both initial treatment (first-line therapy) and subsequent treatment (second-line therapy) don’t work, or stop working.18 Third-line and beyond treatments are used for those who experienced their cancer returning (known as relapse) or become resistant to a previously prescribed medication (known as refractory) and may consist of one or more medicines. Options offered by your healthcare provider will depend on your overall health, prior treatment, and length of relapse.14 Share your experience with your healthcare provider, and ask about the following options:
      • Antibody treatment: Antibodies are proteins in the immune system that help fight harmful pathogens. Monoclonal antibodies are manmade antibodies that can treat follicular lymphoma by marking the cells so that your immune system can find and destroy them, and they can also directly kill cells.14
      • Chemotherapy: Chemotherapy is a cancer treatment that stops the growth of cancer cells either by killing the cells or by stopping them from dividing. Chemotherapy is taken by the mouth or injected into a vein so the treatment can reach the cancer cells through the blood stream.11
      • Chimeric antigen receptor (CAR) T-cell therapy: Immune cells called T cells are removed from the patient’s blood and altered in the lab to have specific receptors (called chimeric antigen receptors, or CARs) on their surface. These receptors can attach to proteins on the surface of lymphoma cells. The T cells are then multiplied in the lab and given back into the patient’s blood, where they can seek out the lymphoma cells and launch a precise immune attack against them.17
      • *An EZH2 inhibitor: An EZH2 inhibitor is an oral nonchemotherapy medicine that is designed to target and block the EZH2 gene. When the EZH2 gene is overactive it plays a key role in causing follicular lymphoma in all patients.15
      • Immunomodulator therapy: Immunomodulators are drugs that modify parts of the immune system.14
      • Kinase inhibitor: Kinases are part of chemical pathways within cells, some of which control cell growth. Kinase inhibitors change the action of the proteins by attaching phosphates to them, stopping cancer growth.14
      • Radioimmunotherapy: Radioimmunotherapy is a type of radiation therapy that uses a radioactive substance attached to a monoclonal antibody, or a manmade antibody, which then binds to cancer cells. The radioactive substance will give off radiation to kill the cancer cells.11
    • Watch and Wait: Ask your healthcare provider about ongoing observation. Some individuals living with follicular lymphoma may choose not to start treatment for a slow-growing lymphoma. Observation, or the “watch and wait” approach, may be recommended if there are no clinical trials you can join and cancer is not doing the following – causing symptoms, limiting organs from working, causing a low blood cell count, spreading, growing large or growing fast, not increasing spleen size.15

    The remaining sections provide additional information about follicular lymphoma, background on possible treatment options you may wish to discuss with your healthcare providers, and suggested questions to use at your next healthcare appointment.

    References for information featured in this guide can be found here.


    Living with Follicular Lymphoma

    QUESTION 1 | Answer:  

    • Tips for Living with Follicular Lymphoma
      • It is possible to live with follicular lymphoma for many years however, follicular lymphoma is typically considered to be an incurable disease. Many often experience periods of remission (no evidence of cancer) before their disease returns (relapses).
      • It is possible to become resistant (or refractory) to previous treatments they have received as their disease becomes more aggressive and/or difficult to treat.
      • It is possible for those living with follicular lymphoma to undergo multiple rounds of therapy as part of lifelong management. It is recommended for patients to work closely with their healthcare providers to develop long-term treatment plans that take into account their cancer stage, previous treatment history, and overall lifestyle.
      • Living a healthy and active lifestyle can also help reduce the risk of developing late health effects from treatment.10
    • Understanding Follicular Lymphoma Treatments
      • Treatment options may vary depending on the stage of the cancer, and your specific needs.
      • There are several treatment options which include watch and wait (or active surveillance), radiotherapy, chemotherapy, immunotherapy, oral therapies, radioimmunotherapy, and stem cell transplantation targeted therapy with a monoclonal antibody. A combination of these treatment options may be used.11
      • Additional options include:
        • EZH2 inhibitor, an oral nonchemotherapy medicine that is designed to target and block the EZH2 gene, which has been implicated in the growth of cancer.15
        • Chimeric antigen receptors (CAR) T-cell therapy in which, immune cells called T cells are removed from the patient’s blood and altered in the lab to have specific receptors.17
    • Managing Side Effects
      • Depending on the treatment plan that you and your healthcare providers choose, you may experience different side effects.
      • Make sure to inform your healthcare provider if you experience any changes from your treatments.
      • For more details on specific side effects of lymphoma treatment you can review this guide from the Leukemia and Lymphoma Society.
    • Monitoring for Relapse
      • You may need to actively monitor your health for any changes or new symptoms of lymphoma by getting regular checkups. If your cancer comes back (relapses) or if your cancer becomes resistant (refractory) to previous treatments, you may wish to consider additional treatment. Your healthcare provider may recommend a specific type of additional treatment based on your age, overall health and symptoms, and the duration of remission from the last treatment you received.12
      • Review our symptom tracker that can be downloaded and printed to help monitor any symptoms you may be experiencing.
    • Better Communication with my Healthcare Providers
      • Your relationship with your healthcare providers is important and built on trust. Here are a few tips to for ongoing communication with your healthcare providers:
        • Plan questions for your healthcare providers in advance and write them down.
        • Keep your medical records organized and up to date.
        • It is okay to speak your mind and let your healthcare provider know if there is anything you are uncomfortable with, or anything you do not understand.13
    • Additional Steps You Can Take to Partner with Your Healthcare Providers
      • Research more about different treatments and support from reputable sources; A list of resources can be found here.
      • Proactively ask your healthcare providers about new research and treatments in the form of clinical trials.
      • Track any symptoms you may be experiencing. Download our symptom tracker to get started.
      • Seek other opinions by consulting with more than one healthcare provider, particularly if you are considering a change to your treatment plan.

    Understanding Your Pathology Report/ Imaging Records

    QUESTION 3 | Answer:  

    • Talk with Your Healthcare Provider About Your Previous Biopsy Results
      • Following a biopsy, a pathology report will become available. This is a document that contains your diagnosis, which was determined by examining cells and tissues under a microscope.3
      • Your pathology report can include the diagnosis of the type of cancer you have, as well as the tumor’s grade, the stage, the lymph node status, and any other test results.4
      • In some cases, after a person has been diagnosed with cancer, a healthcare provider will do tests on a sample of cancer cells to look for certain gene changes. These tests can sometimes provide information about the cancer’s outlook (prognosis) and help tell whether certain types of treatment might be effective.16
    • Talk with Your Healthcare Provider About Your Previous Imaging Results
      • Imaging tests such as, CT scan, Magnetic Resonance Imaging (MRI) scan, PET scan, and others, can be used to look for cancer, to find out how far it has spread, and to help see if cancer treatment is working.5 A radiologist will examine and interpret the images and share a report with your healthcare provider.6
      • Your imaging report can show you what changes may have occurred in your body that are caused by the disease.5
    • Talk with Your Healthcare Provider About Your Previous Biopsy and Imaging Results

      • Following a biopsy, a pathology report will become available. This is a document that contains the diagnosis determined by examining cells and tissues under a microscope.3
      • Your pathology report can include the diagnosis of the type of cancer, the tumor grade, the stage, the lymph node status, and any other test results.4
      • In some cases, after a person has been diagnosed with cancer, a healthcare provider will do tests on a sample of cancer cells to look for certain gene changes. These tests can sometimes give information on the cancer’s outlook (prognosis) and help tell whether certain types of treatment might be useful.16
      • Imaging tests can be used to look for cancer, to find out how far it has spread, and to help see if cancer treatment is working.5 A radiologist will examine and interpret the images and share a report with your healthcare provider.6
      • Your imaging report can show you what changes may have occurred in your body that are caused by the disease.5

    Staging/ Prognosis Overview

    • Understanding Stages of Follicular Lymphoma
      • The stage of lymphoma describes where in the body the lymphoma is located. It is important to remember that even stage IV (the most advanced) lymphomas can often be treated successfully.7
    • Questions About Staging
      • Your healthcare providers will help you determine your stage by conducting diagnostic tests, including biopsies or imaging.7 For any questions about staging, connect with your healthcare providers to determine what type of diagnostic test is right for you, or share results from a previous biopsy or imaging scan (if available).
    • Information About Prognosis
      • Prognosis is assessed by an index score from 0 to 5 that identifies the risk of cancer growing or spreading (called progression) after treatment. Information gathered to determine a score includes the number of lymph node sites that have cancer in them (greater or less than 4), if you are over 60 years of age, if you have elevated lactate dehydrogenase (LDH) levels, if you are stage III or IV, and if you have hemoglobin levels less than 12 grams per deciliter. One point is assigned to each of these characteristics.11
    • Talk with Your Healthcare Provider About Diagnostic Tests
      • Following a biopsy, a pathology report will become available. This is a document that contains the diagnosis determined by examining cells and tissues under a microscope.3
      • Your pathology report can include the diagnosis of the type of cancer, the tumor grade, the stage, the lymph node status, and any other test results.4
      • In some cases, after a person has been diagnosed with cancer, a healthcare provider will do tests on a sample of cancer cells to look for certain gene changes. These tests can sometimes give information on the cancer’s outlook (prognosis) and help tell whether certain types of treatment might be useful.16
      • Imaging tests can be used to look for cancer, to find out how far it has spread, and to help see if cancer treatment is working.5 A radiologist will examine and interpret the images and share a report with your healthcare provider.6
      • Your imaging report can show you what changes may have occurred in your body that are caused by the disease.5

    Details on Specific Stage

    QUESTION 4 | Answer:  

    • Stage I
      • The cancer is found in one lymph node region.7 These regions could include neck, underarms, chest, abdomen, and groin/pelvis.8
      • Or, cancer is found in one organ outside of the lymph nodes but not within any lymph node regions.7
    • Stage II
      • The cancer is in two or more lymph node regions on the same side of the chest. 7 These regions could include neck, underarms, chest, abdomen, and groin/pelvis.8
      • Or, the cancer involves one organ and its regional lymph nodes, with or without cancer in other lymph node regions on the same side of the diaphragm.7
    • Stage III-IV
      • Stage III and stage IV are now considered a single category because they have the same treatment and prognosis.7
      • Stage III: There is cancer in lymph node areas on both sides of the diaphragm.7
      • Stage IV: The cancer has spread throughout the body beyond the lymph nodes.7
    • Recurrent
      • Recurrent lymphoma, also called relapsed non-Hodgkin lymphoma, is lymphoma that has come back after treatment. It may return in the area where it first started or in another part of the body. Recurrence may occur shortly after the first treatment or years later. If there is a recurrence, the cancer may need to be staged again (called restaging).7

    Treatment Options

    • Clinical Trials: Clinical trials test the efficacy and safety of potential new medicines and may be a way to access the newest treatments prior to them being approved.14 Talk to your healthcare provider about clinical trials and you can search for active follicular lymphoma trials at ClinicalTrials.gov. Additional support services for clinical trials are offered by the Lymphoma Research Foundation and the Leukemia and Lymphoma Society.
    • First-Line Treatment (1L): First-line treatments can often include multiple medicines, and options for first-line regimens can depend on your age and health.14 Share your experience with your healthcare provider, and ask about the following options:
      • Antibody treatment: Antibodies are proteins in the immune system that help fight harmful pathogens. Monoclonal antibodies are manmade antibodies that can treat follicular lymphoma by marking the cells so that your immune system can find and destroy them, and they can also directly kill cells.14
      • Chemoimmunotherapy: Chemoimmunotherapy is a term to describe the combination of chemotherapy with an antibody treatment.14
      • Chemotherapy: Chemotherapy is a cancer treatment that stops the growth of cancer cells either by killing the cells or by stopping them from dividing. Chemotherapy is taken by the mouth or injected into a vein so the treatment can reach the cancer cells through the blood stream.11
      • Involved-site radiation therapy (ISRT) for cancers stage I or II: Involved-site radiation therapy is a form of radiation therapy on a limited area. Radiation therapy works by using high energy x-rays to damage the DNA in cancer cells to destroy the cells or stop new cancer cells being formed.14
    • Follow-Up and Supportive Care: The purpose of supportive care, sometimes called palliative care, is to improve quality of life. It’s important to understand this is not just for those at the end of life, and it can prevent or relieve emotional and physical symptoms.14 Additionally, after first-line or second-line treatment, maintenance treatment may be recommended by your healthcare provider in an effort to increase the amount of time until your cancer may come back.14 Continue regular checkups with your healthcare provider, and ask about supportive care available to you.
    • Second-Line Treatment (2L): Second-line treatments are used for those who experienced their cancer returning (known as relapse) or become resistant to a previously prescribed medication (known as refractory). Second-line treatment may consist of one or more medicines. Options offered by your healthcare provider will depend on your level of fitness, prior treatment, and length of relapse.14 Share your experience with your healthcare provider, and ask about the following options:
      • Antibody treatment: Antibodies are proteins in the immune system that help fight harmful pathogens. Monoclonal antibodies are manmade antibodies that can treat follicular lymphoma by marking the cells so that your immune system can find and destroy them, and they can also directly kill cells.14
      • Chemotherapy: Chemotherapy is a cancer treatment that stops the growth of cancer cells either by killing the cells or by stopping them from dividing. Chemotherapy is taken by the mouth or injected into a vein so the treatment can reach the cancer cells through the blood stream.11
      • *An EZH2 inhibitor: An EZH2 inhibitor is an oral nonchemotherapy medicine that is designed to target and block the EZH2 gene. When the EZH2 gene is overactive it plays a key role in causing follicular lymphoma in all patients.14
        • *Approved for adult patients with relapsed or refractory follicular lymphoma who have no satisfactory alternative treatment optionsbased on physician discretion.19
      • Immunomodulator therapy: Immunomodulators are drugs that modify parts of the immune system.14
      • Kinase inhibitor: Kinases are part of chemical pathways within cells, some of which control cell growth. Kinase inhibitors change the action of the proteins by attaching phosphates to them, stopping cancer growth.14
      • Radioimmunotherapy: Radioimmunotherapy is a type of radiation therapy that uses a radioactive substance attached to a monoclonal antibody, or a manmade antibody, which then binds to cancer cells. The radioactive substance will give off radiation to kill the cancer cells.11
    • Third-Line and Beyond Treatment (3L+): Third-line and beyond treatments are given when both initial treatment (first-line therapy) and subsequent treatment (second-line therapy) don’t work, or stop working.18 Third-line and beyond treatments are used for those who experienced their cancer returning (known as relapse) or become resistant to a previously prescribed medication (known as refractory) and may consist of one or more medicines. Options offered by your healthcare provider will depend on your overall health, prior treatment, and length of relapse.14 Share your experience with your healthcare provider, and ask about the following options:
      • Antibody treatment: Antibodies are proteins in the immune system that help fight harmful pathogens. Monoclonal antibodies are manmade antibodies that can treat follicular lymphoma by marking the cells so that your immune system can find and destroy them, and they can also directly kill cells.14
      • Chemotherapy: Chemotherapy is a cancer treatment that stops the growth of cancer cells either by killing the cells or by stopping them from dividing. Chemotherapy is taken by the mouth or injected into a vein so the treatment can reach the cancer cells through the blood stream.11
      • Chimeric antigen receptor (CAR) T-cell therapy: Immune cells called T cells are removed from the patient’s blood and altered in the lab to have specific receptors (called chimeric antigen receptors, or CARs) on their surface. These receptors can attach to proteins on the surface of lymphoma cells. The T cells are then multiplied in the lab and given back into the patient’s blood, where they can seek out the lymphoma cells and launch a precise immune attack against them.17
      • *An EZH2 inhibitor: An EZH2 inhibitor is an oral nonchemotherapy medicine that is designed to target and block the EZH2 gene. When the EZH2 gene is overactive it plays a key role in causing follicular lymphoma in all patients.15
      • Immunomodulator therapy: Immunomodulators are drugs that modify parts of the immune system.14
      • Kinase inhibitor: Kinases are part of chemical pathways within cells, some of which control cell growth. Kinase inhibitors change the action of the proteins by attaching phosphates to them, stopping cancer growth.14
      • Radioimmunotherapy: Radioimmunotherapy is a type of radiation therapy that uses a radioactive substance attached to a monoclonal antibody, or a manmade antibody, which then binds to cancer cells. The radioactive substance will give off radiation to kill the cancer cells.11
    • Watch and Wait: Ask your healthcare provider about ongoing observation. Some individuals living with follicular lymphoma may choose not to start treatment for a slow-growing lymphoma. Observation, or the “watch and wait” approach, may be recommended if there are no clinical trials you can join and cancer is not doing the following – causing symptoms, limiting organs from working, causing a low blood cell count, spreading, growing large or growing fast, not increasing spleen size.15

    FEELING EMPOWERED AND KNOWING YOUR OPTIONS

    It’s important to know that you are in the driver’s seat when it comes to managing your follicular lymphoma in a way that works for your lifestyle. Your healthcare provider is a trusted partner throughout your management of follicular lymphoma and wants what is best for you. Remember it is okay, and encouraged, to seek out information and multiple expert opinions on your care to make sure you are finding the best care partner and selecting the right treatment to fit your needs.

    Stay informed and prepare for discussions with your healthcare team. To ensure you’re getting everything you need from appointments with your healthcare provider, think about what you want to discuss in advance. This could include creating a list of questions, filling out and bringing in the symptom tracker, thinking about any concerns you may want to raise, or bringing a loved one for additional perspective and to help you take notes. As you navigate through your care, the following resources are available for support.

    Questions for Your Healthcare Provider

    Everyone’s experience with follicular lymphoma is different, so asking the right questions can help you play a meaningful role in understanding, monitoring, and managing your follicular lymphoma. ​

    Below you will find a customized list of questions that can help you talk to your healthcare provider about what’s most important to you in your follicular lymphoma journey.

    You can download this complete list of questions here.

    • Questions About My Follicular Lymphoma Status
      • How can I access my pathology report?
      • Can you explain my pathology report to me?
      • Would genetic testing help determine my treatment course?
      • Can you explain my imaging report(s) to me?
      • What do my diagnostic tests indicate?
      • Could you explain staging and what my designation as   means?
      • Is there any additional information that could guide my treatment?
    • Questions About Treatment Options for My Follicular Lymphoma​
    • How is Treatment Given?
      • Which of the following treatment options will I need an on-site appointment to receive?
      • Can I receive treatment from home?
      • Over what time period will treatment be given?
      • Could you explain the doses for each option?
      • Will I need to receive treatment on a given day or time each week?

        Treatment Options

        • Clinical Trials
        • First-Line Treatment (1L)
          • Antibody treatment
          • Chemoimmunotherapy
          • Chemotherapy
          • Involved-site radiation therapy (ISRT) for cancers stage I or II
        • Follow-Up and Supportive Care
        • Second-Line Treatment (2L)
          • Antibody treatment
          • Chemotherapy
          • *An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Third-Line and Beyond Treatment (3L+)
          • Antibody treatment
          • Chemotherapy
          • Chimeric antigen receptor (CAR) T-cell therapy
          • An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Watch and Wait
    • Costs
      • Should I anticipate out-of-pocket costs?
      • Are there any patient assistance programs to help me manage the costs of my care?
      • Are there any programs for someone that is uninsured to help me access my care?
    • Treatment Response
      • How long does the treatment response last?
    • Efficacy
      • Since I am  , what treatment do you think would be most effective?
      • Which of the following treatment options do you feel would work best for me:
    • Impact on Loved Ones
      • Since I am  , what should I expect long-term? How will this impact my family and those supporting my care?
      • Which of the following treatment options will allow me to maintain my independence?

        Treatment Options

        • Clinical Trials
        • First-Line Treatment (1L)
          • Antibody treatment
          • Chemoimmunotherapy
          • Chemotherapy
          • Involved-site radiation therapy (ISRT) for cancers stage I or II
        • Follow-Up and Supportive Care
        • Second-Line Treatment (2L)
          • Antibody treatment
          • Chemotherapy
          • *An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Third-Line and Beyond Treatment (3L+)
          • Antibody treatment
          • Chemotherapy
          • Chimeric antigen receptor (CAR) T-cell therapy
          • An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Watch and Wait
      • Are there any supportive services for family members and care partners?
    • Options
      • Are all of the following options available for me? Are there any other forms of treatment not listed here that you would recommend?

        Treatment Options

        • Clinical Trials
        • First-Line Treatment (1L)
          • Antibody treatment
          • Chemoimmunotherapy
          • Chemotherapy
          • Involved-site radiation therapy (ISRT) for cancers stage I or II
        • Follow-Up and Supportive Care
        • Second-Line Treatment (2L)
          • Antibody treatment
          • Chemotherapy
          • *An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Third-Line and Beyond Treatment (3L+)
          • Antibody treatment
          • Chemotherapy
          • Chimeric antigen receptor (CAR) T-cell therapy
          • An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Watch and Wait
      • How can I find out if a clinical trial is right for me?
    • Quality of Life
      • How would the following treatments impact my day-to-day life?
      • How could these treatments impact my work schedule? Will they require an infusion or can they be taken orally?
      • How could this impact my ability to perform physical tasks (e.g. exercise)?

        Treatment Options

        • Clinical Trials
        • First-Line Treatment (1L)
          • Antibody treatment
          • Chemoimmunotherapy
          • Chemotherapy
          • Involved-site radiation therapy (ISRT) for cancers stage I or II
        • Follow-Up and Supportive Care
        • Second-Line Treatment (2L)
          • Antibody treatment
          • Chemotherapy
          • *An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Third-Line and Beyond Treatment (3L+)
          • Antibody treatment
          • Chemotherapy
          • Chimeric antigen receptor (CAR) T-cell therapy
          • An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Watch and Wait
      • Are there supportive services available to me help cope with living with follicular lymphoma?
    • Safety
      • Could you explain side effects for the following treatment options:

        Treatment Options

        • Clinical Trials
        • First-Line Treatment (1L)
          • Antibody treatment
          • Chemoimmunotherapy
          • Chemotherapy
          • Involved-site radiation therapy (ISRT) for cancers stage I or II
        • Follow-Up and Supportive Care
        • Second-Line Treatment (2L)
          • Antibody treatment
          • Chemotherapy
          • *An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Third-Line and Beyond Treatment (3L+)
          • Antibody treatment
          • Chemotherapy
          • Chimeric antigen receptor (CAR) T-cell therapy
          • An EZH2 inhibitor
          • Immunomodulator therapy
          • Kinase inhibitor
          • Radioimmunotherapy
        • Watch and Wait
      • Is there anything you recommend to help manage the side effects from treatment?
      • Is there a treatment you recommend that might be easier for me to tolerate?

    Questions About the Long-Term Outlook of My Follicular Lymphoma

    • How effective are treatment options for follicular lymphoma?
    • How often is treatment successful?
    • Will my cancer come back?
    • What is the survival rate with my stage of cancer?

    You can download this complete list of questions here.

    See references Toggle
    1. Follicular lymphoma. Lymphoma Research Foundation. Accessed May 25, 2021. Available at: https://lymphoma.org/aboutlymphoma/nhl/fl/
    2. Follicular lymphoma. National Organization for Rare Disorders. Accessed May 25, 2021. Available at: https://rarediseases.org/rare-diseases/follicular-lymphoma/
    3. Pathology Reports. National Cancer Institute. Accessed May 25, 2021. Available at: https://www.cancer.gov/about-cancer/diagnosis-staging/diagnosis/pathology-reports-fact-sheet
    4. Reading a Pathology Report. Cancer.net. Accessed May 25, 2021. Available at: https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/reports-and-results/reading-pathology-report
    5. Imaging (Radiology) Tests for Cancer. American Cancer Society. Accessed May 25, 2021. Available at: https://www.cancer.org/treatment/understanding-your-diagnosis/tests/imaging-radiology-tests-for-cancer.html
    6. How to Read Your Radiology Report. Radiology Ingo. Accessed May 25, 2021. Available at: https://www.radiologyinfo.org/en/info/article-read-radiology-report
    7. Lymphoma – Non-Hodgkin: Stages. Cancer.net. Accessed May 25, 2021. Available at: https://www.cancer.net/cancer-types/lymphoma-non-hodgkin/stages
    8. Lymphoma – Non-Hodgkin: Introduction. Cancer.net. Accessed May 27, 2021. Available at: https://www.cancer.net/cancer-types/lymphoma-non-hodgkin/introduction
    9. Lymphoma – Non-Hodgkin: Subtypes. Cancer.net. Accessed May 27, 2021. Available at: https://www.cancer.net/cancer-types/lymphoma-non-hodgkin/subtypes
    10. Lymphoma Survivorship Fact Sheet. Lymphoma Research Foundation. Accessed May 25, 2021. Available at: https://lymphoma.org/wp-content/uploads/2017/06/LRF_FACTSHEET_Lymphoma_Survivorship.pdf
    11. Follicular lymphoma Guide for Patients. European Society for Medical Oncology. Accessed May 25, 2021. Available at: https://www.esmo.org/content/download/52236/963497/file/EN-Follicular-Lymphoma-Guide-for-Patients.pdf
    12. Follicular lymphoma: Relapsed/Refractory. Lymphoma Research Foundation. Accessed May 25, 2021. Available at: https://lymphoma.org/aboutlymphoma/nhl/fl/relapsedfl/
    13. Communicating with Your Doctor. UCSF Health. Accessed May 25, 2021. Available at: https://www.ucsfhealth.org/education/communicating-with-your-doctor
    14. National Comprehensive Cancer Network (NCCN) Guidelines for Patients: Follicular lymphoma Non-Hodgins’s Lymphoma Series. Version 2019. Accessed May 25, 2021. Available at: https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=13
    15. When FL returns or changes. Follicular lymphoma Foundation. Accessed May 25, 2021. Available at: https://www.theflf.org/when-fl-returns-or-changes.
    16. National Comprehensive Cancer Network (NCCN) Clinical Practices Guidelines in Oncology: B-Cell Lymphomas. Version 4.2021 – May 5, 2021. Page 24.
    17. Understanding Genetic Testing for Cancer. American Cancer Society. Accessed June 16, 2021. Available at: https://www.cancer.org/cancer/cancer-causes/genetics/understanding-genetic-testing-for-cancer.html
    18. Immunotherapy for Non-Hodgkin Lymphoma. American Cancer Society. Accessed June 16, 2021. Available at: https://www.cancer.org/cancer/non-hodgkin-lymphoma/treating/immunotherapy.html
    19. Third-Line Therapy. National Cancer Institute. Accessed June 22, 2021. Available at: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/third-line-therapy
    20. Tazemetostat indication flow statement. Epizyme. Accessed July 29, 2021. Available upon request.
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