Methylprednisolone and Cyclophosphamide for lung fibrosis Information for patients

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1 Methylprednisolone and Cyclophosphamide for lung fibrosis Information for patients This leaflet can be made available in other formats including large print, CD and Braille and in languages other than English, upon request.

2 This information leaflet is for those patients who will undergo treatment with cyclophosphamide and methylprednisolone. What are methylprednisolone and cyclophosphamide? Cyclophosphamide and methylprednisolone are powerful medicines which are used to suppress the immune system. Why have I been prescribed this treatment? You have a lung condition known as pulmonary or lung fibrosis. This may progress or worsen over time due to your immune system being overactive. You have been offered this treatment to try and slow or stop the condition from worsening. Your doctor will have discussed this treatment with other specialists at a meeting to ensure there is agreement that this is the best treatment for you. It is important to realise that this treatment will not reverse or heal the scarring which has already occurred but will hopefully prevent it worsening. What will happen before I start this treatment? Before starting this treatment your doctor will check: That your kidney and liver function are normal, this is done by a simple blood test Whether you have had any recent infections Whether you are prone to bladder infections That you don t have any allergies which may stop this treatment That you aren t pregnant or planning to become pregnant or are breast feeding Whether you have had any vaccinations recently

3 Whether you have had chicken pox or measles in the past. What will happen during my treatment? The treatment is given in the chemotherapy day unit of either North Tees Hospital or Hartlepool Hospital, whichever is closer to your home. The medication is given in this unit as the staff have the expertise in administering this treatment. Each treatment is called a pulse and these are usually given every 3 4 weeks. The complete treatment will take 4-6 hours. The nurse looking after you will monitor your pulse and blood pressure during the treatment. One hour before each treatment, you will be given a medication to prevent bladder inflammation called Mesna. The 2 medicines are given separately into your vein through a drip and each one takes an hour to be given. After this you will go home. What side effects could I have from this treatment? Every patient is an individual; your experience may be different to other patients receiving this treatment. Side effects that you may experience are: - Fatigue - Many people feel tired and have low energy levels for a few days after treatment. If you suffer fatigue it is best to take gentle exercise and rest often. This feeling of fatigue is quite normal and energy levels should begin to improve a few days after treatment. Nausea (feeling sick) and vomiting (being sick) - The severity of any nausea and vomiting will vary from person to person. To try and stop this you will be given an anti-sickness drug before receiving your treatment and some tablets to take home with you.

4 An increased risk of infection You may be more prone to catching infections when receiving this treatment. If possible, it is best to avoid contact with people who have nasty colds, whilst you are receiving this treatment. It is also best to avoid contact with children who have chicken pox. If you have contact with a child who develops chicken pox, please contact your consultant or GP, so that we can check if you are immune to chicken pox. This is done by performing a blood test at the hospital. Rarely a patient may develop a very severe lung infection called PCP or pneumocystis whilst on this treatment. We try to prevent this infection by asking you to take an antibiotic called cotrimoxazole (Septrin) while you are receiving this treatment. You will receive information about symptoms to look out for and who to contact if you are feeling unwell from the nurses at the chemotherapy day unit. Inflammation of the bladder This may occur with the treatment. To help prevent this, you will be given additional fluid by a drip asked to drink plenty of fluids for 24 hours after the treatment. We suggest that you drink approximately 3 litres of fluid on the day of your infusion. Infertility - If you are planning to have a family in the future please tell your doctor as cyclophosphamide can make some people infertile. Infertility may be permanent and can occur in both men and women. For men wishing to father children in the future, you will need to consider sperm banking prior to treatment. In women, cyclophosphamide may also cause a temporary or permanent change in monthly periods, causing them to become irregular or causing them to stop. Women may experience an earlier menopause.

5 Other possible side effects Very rarely some patients experience hair thinning which will grow back on completion of the treatment. You also may experience mouth ulcers and thrush. Will I need more tests while I am taking this treatment? You will need a blood test before each pulse. This will be performed in the chemotherapy day unit 5-7 days before the next treatment. We will test your urine before every treatment to ensure that you are not developing an infection or any bladder inflammation. What if I miss a pulse of this treatment? If you need to miss a pulse for any reason then inform the chemotherapy day unit staff and they will arrange another date. If you are missing a pulse due to side effects they will discuss with your consultant who will decide on further treatment. Can this treatment react with my other tablets? Cyclophosphamide can react with some other medications. Your consultant will review all of your medication to ensure that there aren t any potential problems. It is important that you also tell your consultant of any herbal or over the counter medications you are taking in addition. Can this treatment affect pregnancy or breastfeeding? Yes. Cyclophosphamide must not be taken during pregnancy or breastfeeding as it can harm a developing baby and also pass to your child in breast milk.

6 Both men and women should avoid starting a family for at least 6 months after treatment. It is important that you continue to use highly reliable contraception while you are having treatment. Please inform your consultant or nurse if your period is late and you think you may be pregnant. Should this treatment be stopped for an operation? Yes. If you need to undergo any elective operations you must tell the team looking after you as they will need to decide how long to stop the treatment for before you can undergo an operation. Can I drink alcohol while taking this treatment? Yes, but please drink alcohol in moderation. You should not receive this treatment whilst you have an infection. Please let your nurse or doctor know if you develop any infections. Contact Numbers University Hospital of North Tees Chemotherapy day Unit Telephone: Lung Health Telephone: Department of Respiratory Medicine Telephone:

7 Emergency Department Telephone: hours a day, 7 days a week University Hospital of Hartlepool Chemotherapy Day Unit Telephone: Further information is available from: NHS Choices Telephone: 111 (when it is less urgent than 999) Calls to this number are free from landlines and mobile phones. or via the website at Telephone:

8 This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Quality Assurance Team, University Hospital of North Tees or Comments, Concerns, Compliments or Complaints We are continually trying to improve the services we provide. We want to know what we re doing well or if there s anything which we can improve, that s why the Patient Experience Team is here to help. Our Patient Experience Team is here to try to resolve your concerns as quickly as possible. If you would like to contact or request a copy of our PET leaflet, please contact: telephone: Monday Friday, 9.00am 4.00pm Messages can be left on the answering machine and will be picked up throughout the day. freephone: patientexperience@nth.nhs.uk Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard who will bleep the appropriate person. telephone: hours a day, 7 days a week The Patient Experience Team is available to discuss your concerns in person Monday Friday, 1.30pm 4.30pm. The office is based on the ground floor at the University Hospital of North Tees. Data Protection and use of patient information The Trust has developed a Data Protection Policy in accordance with the Data Protection Act 1988 and the Freedom of Information Act All of our staff respect this policy and confidentiality is adhered to at all times. If you require further information please contact the Information Governance Team. telephone: or information.governance@nth.nhs.uk University Hospital of North Tees, Hardwick, Stockton-on-Tees. TS19 8PE University Hospital of Hartlepool, Holdforth Road, Hartlepool. TS24 9AH Telephone: Fax: PIL1023 February 2018

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