CAR-T treatment resources for patients with Pediatric Acute Lymphoblastic Leukemia (pALL) & 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 OR SCHOOL

If you and your child are working or schooling, you will need to plan to take time off work. Talk to your employers or teachers to know what options are available, as it may require about 4 to 8 weeks of personal leave.

PATIENT & CAREGIVER RESOURCES

  • Talk to a social worker to find out if there are nonprofits with assistance programs for Acute Lymphoblastic Leukemia (ALL) patients.
  • Connect with others through these patient and caregiver resources*
    • Leukemia & Lymphoma Society (LLS):
      World’s largest nonprofit dedicated to creating a world without
      blood cancers. Learn more >
      *LLS operates in the US and Canada.
    • American Childhood Cancer Organization (ACCO):
      ACCO is America’s oldest and largest grassroots organization
      dedicated to childhood cancer. Learn more >
    • VIVA Foundation for Children With Cancer:
      VIVA Foundation for Children with Cancer is a Singapore-based charity which focuses on saving lives of children with cancer in Asia through research, medical care and education. Learn more >
    • BraveHeart for Kids:
      Life-saving hope and inspiration to families facing a pediatric
      cancer ordeal. Learn more >
    • CancerCare:
      Organization dedicated to providing free, professional support
      services. Learn more >
    • Childhood Cancer International:
      Largest patient support organization for childhood cancer. Learn more >
    • Children with Cancer: A Guide for Parents:
      A guide to help parents every step of the way. Learn more >
    • So Your Child Has Cancer:Resources contributed by parents who has kids with cancer. 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 child’s doctor?

Deciding on a cancer treatment or therapy option can be daunting. Start a conversation with your child’s 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 child’s treatment history so that they can discuss or refer you or your loved one to the best treatment option.

CANCER TREATMENT JOURNEY

  • Diagnosis history:
  • My child’s previous cancer treatments (if any) include:
  • The length of my child's cancer treatment journey:
  • The impact of cancer on the overall life of my child and family:
  • Other health conditions my child has (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 your child.

DIAGNOSIS AND CANCER TREATMENT OPTIONS

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

PREPARATION

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

POST-TREATMENT

  • What are the side effects we should take into account and how will those be managed?
  • How will I know my child’s cancer treatment is working?
  • After returning home, how quickly can my child get back to their daily routine?
  • What support is available to us after the cancer treatment?

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

Download the guide

How do I support my child’s nutritional
and physical needs during cancer treatment?

How support my child

A healthy and balanced lifestyle can help your child feel better and stronger1 before, during, and after cancer treatment. Encouraging your child to stay active by doing regular exercises has a wide range of benefits.2 This includes 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 your child gets the nutrition they need. A nutritious diet rich in calories, protein, vitamins, and minerals gives the body energy to recover fully.3 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, children with cancer have an increased need for protein, carbohydrates, and healthy fats.4 A balanced diet5 includes:

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

When your child undergoes cancer treatment, their taste and appetite6 may transform dramatically. Hence, getting them to eat anything can be challenging. Here are some tips to help your child eat better:

  • Eat small meals and snacks throughout the day. Healthy snacks are peanut butter and crackers, cheese sticks, pudding, fruit roll-ups, cereal, and milk.
  • Drink liquids between meals instead of with meals. This way, your child won’t be too full from the liquids and may have an appetite to eat.
  • Have your child eat their biggest meal when they feel the hungriest. For example, if your child is hungriest in the morning, make breakfast the biggest meal.
  • Try blander foods. If your child is sensitive to strong tastes or smells, serve plain meals like bread, rice and soups that may be easier to eat.

The nutritional, physical and emotional needs of children with cancer may vary individually. Talk to your care team and a registered dietitian to better understand your child’s specific needs and recommended eating and exercise plan.

While coping and caring for your child during their treatments can be stressful, practicing mindfulness may help reduce stress and anxiety. It may not be easy, but mindfulness can help you and your child focus on the present and bring hope into your everyday lives.

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 cancer 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. Why good nutrition is important. (n.d.). Retrieved March 11, 2022, from Cancer.org website: https://www.cancer.org/treatment/children-and- cancer/when-your-child-has-cancer/nutrition/why-nutrition-is-important.html

  2. 7 Ways Children With Cancer Benefit From Physical Activity. (2021, July 27). Retrieved March 11, 2022, from Choose PT website: https://www.choosept.com/health-tips/7-ways-children-cancer-benefit-physical-activity

  3. What children with cancer need: Nutrients. (n.d.). Retrieved March 11, 2022, from Cancer.org website: https://www.cancer.org/treatment/children-and- cancer/when-your-child-has cancer/nutrition/what-children-with-cancer-need.html

  4. Nutritional needs for kids with cancer. (n.d.). Retrieved March 11, 2022, from Kidshealth.org website: https://kidshealth.org/en/parents/cancer- nutrition.html

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

  6. Dell Children’s Medical Center of Central Texas. (2017, April 17). How to help children with leukemia eat after treatments. Retrieved March 11, 2022, from Children’s Blood & Cancer Center website: https://www.dellchildrens.net/childrens-blood-and-cancer-center/2017/04/17/help-children-leukemia-eat- treatments/

  7. Ways to help your child take in more protein and calories. (n.d.). Retrieved March 11, 2022, from Cancer.org website: https://www.cancer.org/treatment/ children-and-cancer/when-your-child-has-cancer/nutrition/ways-to-increase-protein-and-calories.html

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

  9. Bachanova, V., Bishop, M. R., Dahi, P., Dholaria, B., Grupp, S. A., Hayes-Lattin, B., … CAR T-cell Consortium. (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. doi:10.1016/j.bbmt.2020.04.008

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

  11. CAR T Patient & Caregiver Guide. (n.d.). Retrieved March 11, 2022, from Cancer Support Community website: https://www.cancersupportcommunity.org/ sites/default/files/fsac/CAR_T_Patient_and_Caregiver_Guide.pdf

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

  13. A Caregiver’s Guide to Kymriah Therapy, 2019 (11/19, KYM-1223352) – extracted from Novartis resource

  14. CAR-T cell therapy: Pioneering cancer therapy.(n.d.).Retrieved March 11,2022,from Novartis website: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.