Post-chemotherapy advice and treatments

What is the most common side effect of treatment?

The most common side effect that your child’s treatment causes is bone marrow suppression.

The normal activity of the bone marrow is reduced. The bone marrow’s purpose is to produce cells, white cells, red cells and platelets. Following a course of chemotherapy these cells are not produced in normal amounts for several days. Usually, the blood count falls gradually following each course and is at its lowest around 12 to 15 days after the start of a course. It recovers in a further 7 to 10 days, so the courses of drugs can be given every 21 to 28 days.

When the blood count is low your child is at risk of becoming unwell as a result of an infection. This can be life threatening and must be treated promptly with antibiotics. The usual sign of a potential infection is a high temperature, but the temperature may be low. If you are concerned your child is unwell then it is important to contact the ward for advice. The infections that can cause problems, usually occur as a result of infection from the common germs found on our own skin and in our own gut. It is quite safe for your child to mix with other people and go to school in between their courses of treatment, providing they feel well.

If your child is unwell

If your child is unwell, please contact the day care between Monday to Friday from 8am and 4pm on 0114 226 7875 or 0114 271 7268.

If it is out of hours from 4pm to 8am or on weekends, please contact Ward 6 on 0114 271 7322 or 0114 271 7309.

If your child becomes seriously unwell, please call 999 for an ambulance so that your child can receive immediate medical attention and be taken to the nearest emergency department.

What do I do if my child has a temperature?

If you child’s temperature reaches 38 degrees Celsius , please telephone the ward for advice. Please do not give your child Calpol, until you have spoken to the ward.

If your child’s neutrophil count is below 0.5 and they have a temperature above 38 degrees Celsius they will be admitted to a ward. They will have blood tests and blood cultures taken and commence intravenous antibiotics for a minimum of 48 hours. Further management may be required after this time depending on whether your child remains unwell, if they have persistent fevers, their blood test and blood culture results.

My child has purple blood spots (petechiae) under the skin, what do I do?

If your child has petechiae spots (purple blood spots) you should telephone the ward for advice. It is likely that they will need to attend the ward for a full blood count and subsequently a platelet transfusion.

My child looks pale, what do I do?

If your child is pale, breathless, lethargic and complaining of headaches they may be anaemic. This is a low red cell count, and a blood transfusion may be necessary. However, if the blood count is low and your child is well and performing at their normal level then a transfusion is not usually required. Please phone the ward for advice if you are concerned or unsure.

My child has a nosebleed, what do I do?

If your child has an un-resolving nosebleed or gum bleed, you should telephone the ward for advice. It is likely they will need to attend the ward for a full blood count and subsequently a platelet or blood transfusion.

What do I do if my child is sick or has diarrhoea?

During chemotherapy many children may be sick or if not actually sick may feel as if they want to be sick (nausea). Diarrhoea can also be a problem for some children. Anti-sickness drugs are given and can be very helpful at preventing these unpleasant symptoms.

If your child is being sick a lot or have diarrhoea, and is not keeping any oral fluids down, then you should contact the ward for advice. You may need to attend the ward for intravenous anti-sickness drugs and fluids for potential dehydration.

Will my child’s hair fall out?

Due to the chemotherapy treatments your child may lose their hair. This does not happen for every child and depends on which chemotherapy drugs your child is receiving. Some children may like to cover their heads with a hat or bandana. Wigs are available on prescription and from The Little Princess Trust. Please speak to the ward or clinic staff if your child would like one.

Mouthcare

How can I help prevent my child’s mouth becoming sore?

The lining of the mouth is very sensitive and can be damaged by chemotherapy and radiotherapy. Harmless bacteria normally present in the mouth can cause infections and soreness, particularly after chemotherapy. Carrying out effective mouth care can help reduce your child’s risk of infections or soreness in the mouth.

Regular mouth care is an essential part of your child’s treatment. The health of the mouth greatly influences their nutritional status, comfort, communication and protective mechanisms against infection. Mouth care should be carried out as a minimum of 2 times per day.

If the mouth is sore use 10mls of Difflam mouthwash or spray preparation (as prescribed by the doctors). This will help to numb the mouth as it is mildly antiseptic (swish and spit).

Use a soft nylon toothbrush to gently clean the teeth with regular toothpaste or chlorhexidine gel. Do not mix chlorhexidine gel with regular toothpaste.

Corsodyl (Chlorhexidine gel) can be used with a toothbrush. These products are aimed at reducing plaque. If you use your own toothpaste, please leave 60 minutes between this and the Chlorhexidine gel or mouthwash.

If you have used Corsodyl toothpaste, then proceed to thoroughly swish and gargle and spit 10mls Corsodyl (chlorhexidine) mouthwash for 30 seconds if possible. Please wait for 60 minutes before taking diet and fluids.

Apply yellow soft paraffin (Vaseline) to dry or cracked lips.

We believe that parents are the best people to look after their child’s mouth and to undertake their mouth care. If you find this difficult, please ask for help.

My child needs to see a dentist, what do I do?

We advise you not to have dental treatment carried out by the family dentist during your child’s treatment. The dentists from the Charles Clifford Dental Hospital will see your child whilst they are at the Children’s Hospital and carry out any necessary dental work.

Eating and Drinking

I am concerned about my child’s eating and drinking, what can I do?

Many children receiving chemotherapy have a poor appetite and will not eat well. This naturally causes anxiety, and many parents worry that their child will not be strong enough to cope with their treatment. Please try not to get worried about this. Getting into arguments with your child about eating is stressful for everyone. We will monitor your child’s weight and if we have concern about their food and drink intake, we can supplement nutrition in several ways.

Our dietician can discuss with you how you can improve the nutritional content of what your child will eat. There are also several supplements that can be added to drinks and foods to make them more nutritious. If your child cannot eat enough then sometimes, we use a nasogastric tube (NG) to supplement or replace what your child is taking by mouth. Occasionally we may have to use intravenous total parental nutrition (TPN) if NG feeds cannot be tolerated.

Contact with infectious diseases

My child has been in contact with chicken pox (Varicella), what do I do?

Chicken pox (Varicella) is an acute and highly infectious disease which is transmitted directly by personal contact or droplet spread. Vesicles (fluid filled spots) may appear on the face and scalp, spreading to the body and then the arms and legs. After 3 to 4 days they begin to dry out and scabs form, but new vesicles may continue to appear. There may only be a few spots, or your child may be covered in them. The infectious period is from 2 days before the spots appear until all the spots are dry and scabbed.

If your child has had chicken pox, then they will usually have antibodies, and these provide sufficient protection against further infection. We test your child’s blood at the time of diagnosis to check their antibody status. If your child has antibodies, you should not need to worry about contacts with chicken pox or shingles.

If your child does not have antibodies and has a close contact with a person who has chicken pox, or who develops it within the following 4 days, then please contact the ward so we can decide if treatment is required. It may be necessary for your child to have a 3 week course of medicine to reduce the chance of chicken pox developing. It is not necessary to keep your child away from school because there is “chicken pox about”.

Close contact is where your child has been in the same room for more than 20 minutes with a person that has chicken pox or subsequently develops it.

My child has been in contact with shingles (Herpes Zoster), what do I do?

This is the reactivation of the virus which initially causes chicken pox. Vesicles usually appear in one area of the body, commonly the head, neck or trunk and the child may experience intense pain along the effected nerve pathway.

Shingles is infectious and may cause chicken pox in children who have not had them. It does not cause a problem to anyone who has had chicken pox.

My child has been in contact with measles, what do I do?

Measles is an acute viral illness transmitted via droplet infection. Common signs include spots in the mouth, runny nose, runny eyes, cough, rash and a temperature. Cases of measles are on the increase due to the poor uptake of childhood immunisations.

If your child has had measles or the measles vaccination, then they should be immune and thus contact with a person with measles should not produce any problems. If your child does not have the antibodies to measles and there is a history of contact with a person who either has measles or who develops them within the following 2 to 3 days, then please contact the ward. It may be necessary for a doctor to confirm that the rash is measles as it is often difficult to be sure. If your child is not immune, then we may advise treatment with an antibody injection. It is not necessary to keep your child away from school if there is “measles about”.

My child has Covid 19, or has been in contact with someone who has, what do I do?

Research has shown that Covid 19 in immunocompromised children causes mild symptoms for most children. If your child develops symptoms or has had contact with Covid 19 please contact Ward 6 or Day Care for advice.

What do I do if my child is in contact with anything else infectious?

Contact with other infections such as German measles, mumps, scarlet fever, coughs and colds and so on, do not require specific treatment but in general, contact with anyone who is unwell with an infection is best avoided.

Immunisations

What do I do If my child is due their childhood immunisations and vaccinations?

It is recommended that for the duration of your child’s treatment and for a period of 6 months following completion of treatment that routine immunisations should not be given. This is because your child’s immune system may respond inadequately.

6 months following completion of all treatment, your child’s immune system should be able to respond correctly and therefore the immunisation programme may be resumed.

Siblings and close contacts of immunocompromised children such as those receiving chemotherapy or within 6 months of completing chemotherapy should not be given the oral ’live’ poliomyelitis vaccine. The inactivated vaccine should be used instead. Siblings and close contacts can have the MMR immunisation. All children, at any stage of treatment may have the meningitis C vaccine.