CAR-T treatment resources for patients with Diffuse Large B-Cell Lymphoma (DLBCL) & caregivers

Seeking CAR T-Cell Therapy abroad? Here’s what you need to know to plan for your journey: Eligibility, Hospital Location, Travel Plan, Accommodation and Treatment Process.

Watch this video to find out the steps involved in the CAR-T Treatment journey, a form of immunotherapy for patients with certain advanced lymphoma and leukaemia. From the treatment procedure to booking the right accommodation, this video covers what you need to prepare for your CAR-T treatment.

HOW TO PLAN YOUR CAR-T TREATMENT JOURNEY

HOW TO PLAN YOUR CAR-T TREATMENT JOURNEY

What kind of support is
available for CAR-T therapy?

We understand that cancer treatments can be stressful for everyone involved. It is okay to ask for help. Here are some things to take note of when considering CAR-T cell therapy:

TIME OFF FROM WORK

Having a caregiver with you

  • Identify someone who can be with you for an extended period of time as you undergo treatment. If you and your caregiver are working, you will both need to plan to take time off. Talk to your employers to know what options are available, as it may require about 4 to 8 weeks of personal leave.

If you are travelling for treatment outside of your country

  • Account for considerations such as temporary housing, navigating through the financial coverage, and visa applications.

PATIENT AND CAREGIVER RESOURCES

  • Connect with others through these patient and caregiver resources*
    • Leukemia & Lymphoma Society (LLS):The world’s largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education and patient services Learn more >
      *LLS operates in the US and Canada.
    • Cancer Support Community:The largest professionally led nonprofit network of cancer support worldwide Learn more >
    • My Life Line:A network to connect cancer patients and caregivers with friends and family Learn more >
    • CancerCare:An organization that provides free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer Learn more >
    • Cancer Research Institute:An organization that leads the field with support for immunotherapy research and clinical trials Learn more >
    • Lymphoma Research Foundation:non-profit organization devoted exclusively to funding lymphoma research and supporting the lymphoma community’ Learn more >
    • My Leukemia Team:A social network that provides resources for emotional support and advice on managing treatment or therapies for leukemia. Learn more >

      • Disclaimer: The organizations and websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy or any other aspect of the information supplied by these organizations or contained on these websites.

What should I ask my child’s doctor?

What should I ask
my doctor?

Deciding on a treatment or therapy option can be daunting. Start a conversation with your care team by asking questions that you or your loved ones may have about CAR-T cell therapy. By doing so, you can learn more about the options available and make a more informed decision when considering the next steps.

Begin by describing your treatment history so that they can discuss or refer you to find the best treatment option for you or your loved one.

TREATMENT JOURNEY

  • Diagnosis history:
  • My previous cancer treatments (if any) include:
  • The length of my cancer treatment journey:
  • The impact of cancer on my life and family:
  • Other health conditions I have (if any):

Next, you may consider asking the following questions across different treatment stages to help you decide if CAR-T cell therapy is right for you.

DIAGNOSIS AND TREATMENT OPTIONS

  • Given my treatment history, is CAR-T cell therapy an option?
  • What factors need to be considered if I am a right candidate for CAR-T?
  • If CAR-T is not an option for me now, what other treatments can I look into? Can I still consider CAR-T in the future?
  • What are the options for preserving healthy T-cells early, in case they are needed at a later time?

PREPARATION

  • How do I prepare for CAR-T cell therapy and what considerations do I need to keep in mind?
  • Will I need to receive a form of chemotherapy or other treatments (i.e., bridging therapy) before CAR-T can be administered?
  • Do I have to stay in the hospital post-treatment? How much time should I plan to take off from work before and after treatment?
  • What support is available to me throughout the treatment?

POST-TREATMENT

  • What are the side effects I should take into account, and how will those be managed?
  • How will I know if my treatment is working?
  • After returning home, how quickly can I get back to my daily routines?
  • What support is available to me after the treatment?

Download the handy doctor discussion guide to determine with your doctor if CAR-T cell therapy is right for you.

pdf IconDownload the guide

Supporting nutritional and physical
needs during treatments

How support my child

A healthy and balanced lifestyle can help you feel better and stronger before, during, and after treatments. Patients who stay active by doing regular exercises benefit from maintaining heart and lung health, building muscles, improving sleep, reducing cancer-related fatigue, and boosting emotional well-being.

Most nutritionists agree that eating a mix of foods helps ensure you get the nutrition you need. A nutritious diet rich in calories, protein, vitamins, and minerals gives the body energy to recover fully and manage your treatment’s side effects better. Furthermore, it supports the immune system, reduces the risk for some diseases, and helps the body replace blood cells and healthy tissues damaged from cancer treatment.

In general, cancer patients have an increased need for protein, carbohydrates, and healthy fats. A balanced diet1 includes:

  • A variety of fruits and vegetables
  • Whole grains and legumes
  • Low-fat proteins such as poultry, lean meats, and fish
  • Fat free or low-fat dairy
How support my child

After undergoing treatment, your taste and appetite may transform dramatically. Hence, eating well can be challenging.
Here are some tips to help you eat better:

  • Eat small meals and snacks throughout the day.2 Healthy snacks are peanut butter and crackers, cheese sticks, pudding, fruit roll-ups, cereal, and milk.
  • Avoid raw or rare meat, fish and undercooked or runny eggs.3
  • Wash fresh fruits and vegetables thoroughly.3
  • Try blander foods.4 If you are sensitive to strong tastes or smells, have plain meals like bread, rice and soups that may be easier to eat.

    • The nutritional, physical and emotional needs of cancer patients may vary individually. Talk to your doctor, nurses, care team, and a registered dietitian to better understand your specific needs and recommended eating and exercise plan.

    Cancer treatments can be stressful for everyone involved. It’s just as important to ask for help from your loved ones and seek care for your mental and emotional well-being. Some ways to help reduce stress and anxiety include taking time for self-care and practicing mindfulness. Mindfulness can help you focus on the present and bring hope into your everyday life.

Frequently asked questions (FAQs)

There are 5 CAR-T cell therapies that the FDA has approved. These include8:

  • Tisagenlecleucel (Kymriah)
  • Idecabtagene vicleucel (Abecma)
  • Axicabtagene ciloleucel (Yescarta)
  • Lisocabtagene maraleucel (Breyanzi)
  • Brexucabtagene autoleucel (Tecartus)

They are approved to treat these types of cancers:

  • Acute lymphoblastic leukemia (ALL): Kymriah is the first and only approved treatment for pediatric and young adults who suffer from ALL (up to age 25). Tecartus is only indicated for young adults (aged 18-25). They are suitable for patients who have precursor ALL that has relapsed (went into recovery, then cancer came back) or is refractory (became resistant and non-responsive to standard treatment).
  • B-cell lymphoma: Yescarta, Kymriah, and Breyanziare approved for adults with large B-cell lymphoma who have undergone two or more therapies or have relapsed.
  • Follicular lymphoma (FL): (Kymriah and Yescarta is approved for adults (18 years old and above) with FL who resisted treatment, or its cancer came back after two other kinds of treatment.)
  • Mantle cell lymphoma: Tecartus is approved to treat adults with treatment-resistant or relapsed mantle cell lymphoma.
  • Multiple myeloma: Abecma is approved for adults (18 years old and above) with multiple myeloma whose treatments did not respond or returned after four other kinds of treatment.

Yes, CAR-T therapy remains as an option for patients in need of a potentially curative therapy to treat their cancers. Speak to your child’s care team to understand the steps their treatment centers have taken to ensure the health and safety of their patients.9

While there is still limited information about the effectiveness of these vaccines in patients with active cancer and who are on immunosuppressive therapies, many medical experts have shared that these vaccines are safe for use in cancer patients. There is no data at present to show that COVID- 19 vaccines have any impact on patients’ cancers.10

However, it is important to speak to your child’s care team about your child’s immune system to make a more informed decision.

Yes, make a list of the medication (prescribed or over the counter) and supplements your child is taking. You will also need to inform your child’s care team how much and how often your child is taking them and what it is treating.11

CAR-T patients generally do not lose their hair while undergoing therapy.12

Perhaps 4-6 weeks post treatment. Your care team will establish a monitoring plan for ongoing follow-ups. The Food and Drug Administration (FDA) recommends that all patients be followed for 15 years after infusion.13

CAR-T cell therapy continues to be an innovative immunotherapy option for cancer patients. This potentially curative treatment is also currently being studied to treat other types of cancers which don’t respond to or have returned after treatment, including follicular lymphoma (FL), chronic lymphocytic leukemia (CLL), and multiple myeloma (MM).14

Other CAR-T cell therapies are being studied to target different types of cancer, such as brain tumors, breast cancer, acute myeloid leukemia, Hodgkin’s lymphoma, neuroblastoma, and pancreatic cancer. Learn more about these on clinicaltrials.gov.

References

  1. Food and nutrition. (n.d.). Lls.Org. Retrieved March 11, 2022, from https://www.lls.org/managing-your-cancer/food-and-nutrition

  2. American Cancer Society. (2019). Nutrition for the patient with cancer during treatment. American Cancer Society.

  3. Diet guidelines for immunosuppressed patients. (n.d.). Lls.Org. Retrieved March 11, 2022, from https://www.lls.org/managing-your-cancer/food-and- nutrition/diet-guidelines-immunosuppressed-patients

  4. UCSF Health. (2019, March 14). Diet for cancer treatment side effects. Ucsfhealth.Org; UCSF Health. https://www.ucsfhealth.org/education/diet-for- cancer-treatment-side-effects

  5. CAR T-cell therapy: Who might benefit? (n.d.). WebMD. Retrieved March 11, 2022, from https://www.webmd.com/cancer/features/who-benefits-car-t- cell-therapy

  6. Bachanova, V., Bishop, M. R., Dahi, P., Dholaria, B., Grupp, S. A., Hayes-Lattin, B., Janakiram, M., Maziarz, R. T., McGuirk, J. P., Nastoupil, L. J., Oluwole, O. O., Perales, M.-A., Porter, D. L., & Riedell, P. A. (2020). Chimeric antigen receptor T cell therapy during the COVID-19 pandemic. Biology of Blood and Marrow Transplantation: Journal of the American Society for Blood and Marrow Transplantation, 26(7), 1239–1246. https://doi.org/10.1016/ j.bbmt.2020.04.008

  7. COVID-19 vaccines in people with cancer. (n.d.). Cancer.Org. Retrieved March 11, 2022, from https://www.cancer.org/treatment/treatments-and-side- effects/physical-side-effects/low-blood-counts/infections/covid-19-vaccines-in-people-with-cancer.html

  8. Frankly Speaking About Cancer, Cancer Support Community, Gilda’s Club. (2021). CAR T Patient & Caregiver Guide. The Cancer Support Community. Retrieved March 11, 2022, from https://www.cancersupportcommunity.org/sites/default/files/fsac/CAR_T_Patient_and_Caregiver_Guide.pdf

  9. Frequently asked questions about CAR T-cell therapy. (n.d.). Uchicagomedicine.Org. Retrieved March 11, 2022, from https://www.uchicagomedicine.org/ cancer/types-treatments/car-t-cell-therapy/frequently-asked-questions

  10. Novartis.(2021a).KymriahpALLPatientBrochure.https://www.us.kymriah.com/siteassets/kymriah/all/pdf/kymriah-pall-patient-brochure.pdf

  11. CAR-T cell therapy: Pioneering cancer therapy. (n.d.). Novartis. Retrieved March 11, 2022, from https://www.novartis.com/research-development/ technology-platforms/cell-therapy/car-t-cell-therapy-and-beyond/car-t-cell-therapy-pioneering-cancer-therapy

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Disclaimer:This is global website for information on CAR-T Cell Therapy and is intended for Patients and Caregivers outside the US. The information on the site is not country specific and may contain information that is outside the approved indication in the country in which you are located.