Discharge advice from ward C10 / C9 following CAR-T cell therapy

Introduction

Although you are well enough to go home there are still certain precautions to take and things to be aware of. Before you go home, you will have a discharge talk with your transplant Clinical Nurse Specialist (CNS). This will give you the opportunity to ask any questions you have and also identify any extra support you or your family might need.

Information for patients, relatives and care givers

You will need to remain close (less than one hour drive) to Cambridge University Hospital, Addenbrookes for at least 4 weeks following your treatment with CAR-T cells.

You should should not be left alone at any time of the day or night for at least the first 28 days following CAR-T cell infusion, as there is a potential risk that you could develop neurological toxicity during that time.

You must not drive for 8 weeks after receiving your infusion. If you experienced a neurological event after your treatment with CAR-T cells, then do not drive for 8 weeks after this has been resolved.

In the weeks after CAR-T treatment, it is important to continue to look for side effects and be mindful of your health and wellbeing.

Cytokine Release Syndrome (CRS) and Neurological Adverse Reactions are side effects of your infusion that may occur after your discharge and require readmission to the hospital to treat your symptoms.

The symptoms you will need to be aware of

• Fever higher than 38.0°C (Please contact the hospital if your temperature is more than or equal to 37.5°C) – please check your temperature daily
• Shortness of breath when at rest or active
• Confusion, disorientation, hallucinations
• Difficulty speaking or understanding what you are being told. This may also include difficulty in reading or writing
• Somnolence (feeling sleepy or drowsy)
• Tremors (shaky arms or body parts)
• Muscle Twitching
• Involuntary muscle movements / seizure
• Pain in your muscles
• Unexplained bleeding from skin or mucosa

Support after treatment

• Staying rested , moderate exercise
• Keeping hydrated, eating well
• The impact of your treatment on you and your family, psychologically as well as physically, can be underestimated, especially as recovery can often feel frustratingly slow.
• Please talk with your CNS or doctor about how you are feeling, as we are here to support both you and your family ( counselling and financial support )

Important reminders

• Carry Patient Alert Card with you at all times and inform all healthcare providers when attending
• Not to drive or use machinery for 8 weeks after the CAR-T cell infusion , or until your cell therapy tream says is safe to do so.
• To have irradiated blood products only
• Will not be able to donate blood or organs
• To avoid use of steroids unless directed by consultant
• Continue to watch for side-effects or symptoms that may occur and tell your cell therapy immediately
• Disease monitoring (include PET / CT at 1 and 3 month post infusion)

Useful Contact Numbers

Being at home after treatment can often be a daunting prospect. If you have any problems or just want to talk to someone, please don’t hesitate to call the CAR-T/BMT team on one of the numbers below. There is always someone here that will be pleased to speak to you.

Please immediately contact us on the numbers below if you develop any of the symptoms.

CAR-T / BMT office - 01223. 217224 Monday to Friday (08.00-18.00)

Cellular Therapy Nurse Specialist (CNS) - 01223 274669 Mon/Wed/Thur/Fri (08.00-18.00)

Dedicated Emergency Number - 01223 274225 (for Urgent enquiries, 24 hours a day, 7 days a week - inform them that you received CAR-T cell therapy)

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and / or specialist one to one care is required.