- Sometimes CLL patients feel alone; is there help for patients who need help with living with CLL day-to-day?
- Do patients need to limit contact with their family owing for potential from picking up infection from children for example?
- If a patient has a cold should the infection be managed differently and what should they do to communicate this to their care providers
- What can you do to manage the symptoms of CLL?
- Can you give us some advice on managing nausea?
- Is it best for patients to be totally open about their lifestyle and what measures they are taking to manage their disease?
- Is there anything CLL patients can do to proactively assist with their disease management, for example taking dietary supplements?
Self Help; Managing your health when living with CLL
This article and the CLLSA site is not intended to be a substitute for professional medical care and we would always advise you to check with your doctor if you have any concerns about your condition or treatment.
These articles cannot cover all the areas that affect your health. The key to staying as well as you are able is to think about your lifestyle and when you do things.
Consider what you read carefully - you may need further advice.
Anyone who has been diagnosed with CLL has a damaged immune system. This means that we are more likely to get infections, and less able to fight them than healthy people of the same age.
Words that your doctors may use are immunosuppressed, leucopoenia, myelosuppression, pancytopenia, thrombocytopenia, granulocytopenia – they are all connected to having a damaged immune system.
To find out about your own immune status and health talk about your particular health needs with your hospital (haematology or oncology) doctor and your own GP surgery.
Although we can theorise about how good your immune system is at various times in the CLL journey, think about what you actually need. If you are getting many infections, or your cuts infect easily, or you do not recover well from colds, go back and talk to your doctors to decide what you need to do to stay healthy.
A good site to read about your needs is chemocare.com
If you are having treatment for CLL (chemotherapy or other drugs) or you have had a stem cell transplant then you are more at risk from infections than ‘ordinary’ CLL patients. You will have had clear instructions from your doctors how to protect yourself and when to contact them if you are ill, there are also some links included here.
Links in this section
Two warnings- always consider what you read carefully, it may not apply to you.
Although we have selected useful sites (Jan 2015) things change fast over time. As we get more knowledge, the sites may become inaccurate. Some of the sites may be commercial; inclusion of their site is not an endorsement of a product. CLLSA has no links with manufacturers.
Some of the facts and links on this page may apply to you, some may not.
Risk management is about knowing where the risks are and if you are willing to take them. If you have concerns discuss these with your medical team to aid your decisions.
Taking Your Meds
If you have medications for any condition take them as directed by your medical team.
Take any medicines that you have been given to protect you from infections- (prophylactic medicines).
Getting Help with your medicines
For minor ailments you can ask your pharmacist. The pharmacist needs to know all your medications including anything you buy for yourself like indigestion tablets or pain killers. You can ask for help by telephone to the pharmacy.
For other problems-
NHS Direct Wales
GP Surgery- keep the number by your telephone.
Work with your carer and family.
Make sure that your carer and your family know what they need to know about your conditions and when they need to help you. Working together you can avoid more problems- more time for everyone to get on with what they enjoy. There are jobs around the home that you should avoid if you are immune suppressed. Pregnant women are also immune suppressed and at risk see: Healthline.com
If a family member is pregnant, then the pregnant woman needs to know her risks as well as you do, and any high risk tasks should be done by a third party.
Reporting Symptoms- seeing your doctors
To help your doctors to help you, keep a diary of your symptoms. To see which symptoms are relevant to CLL a good site to read is (add the link form home computer). But record and take the notes of all your symptoms. CLL symptoms include night sweats, and the number of infections that you have had.
This site is about working with your doctor and how you can build on your partnershipLymphomation.org.
Take your notes to each visit to the doctors, including your GP. Very occasionally your visits to the surgery or hospital may be recorded on different ‘screens’ at the surgery or clinic, so while you may be aware that you are had 4 infections in 3 months, the doctor would not be. Have a summary ready-‘4 infections in 3 months, night sweats every week’ to quickly give the doctor the important part of the picture.
If you are having chemotherapy or a stem cell transplant, you will be given emergency help lines and told when to contact them. Keep the numbers by the phone.
Don’t wait- get help
CLL patients do not have the luxury of being able to wait for a doctors appointment. If you have a temperature, or feel ill, then get in touch with your GP or
NHS Direct Wales
Do it now, not Monday morning. If you contact any medic, or have to go to accident and emergency for treatment, repeat to every new doctor or nurse that you talk to that you have CLL, and have a damaged immune system.
What can I ask the NHS for?
At any time, you can ask to see your GP and get referred back to the hospital. If you are not happy about your health, then you could well be saving the NHS time and money by self referring.
If you have trouble with talking in front of a doctor, or disagreeing with a doctor even for your own good, then consider taking a friend to help talk to them with you. You and your doctors are a partnership, and they need your information just as you need the doctors’ information.
You can ask for a second opinion on your CLL through your GP or through your hospital doctor. This is available on the NHS.
Tiredness or Fatigue
If you suffer from tiredness or the fatigue due to cancer or treatment, learn to pace yourself. Getting CLL and getting tired is not your fault- if you can pace yourself, you can get the most out of life.
See symptoms page
This section is about fatigue due to cancer or its treatment. Fatigue means feeling very tired or exhausted all or most of the time. The tiredness is not relieved by rest and can affect you physically, psychologically and emotionally.
Although CLL patients may not get the full protection from vaccines, it is recommended that are vaccinated.
Visit CLLSA Vaccination Page for full guidance.
It is important that patients receive vaccinations against the common pneumonia causing bacteria – Pneumococcus and Haemophilus Influenza B, and the meningitis preventing vaccine against Meningococcal C.
The annual flu jab is also important but the majority of patients with CLL will not mount an immune response against that particular strain of flu.
As important is to make sure those close to you have the flu vaccine as the most likely source of flu transmission to you is people close to you. They will respond to a flu jab so they are protecting you by having it.
Warning live vaccines such as polio, H. zoster (shingles) and yellow fever should be avoided and not given to CLL patients.
The whole you
You are not ‘just’ a CLL patient- take care of the whole you. If you have concerns about other conditions, get advice and help from health care professionals and your medical team.
Keep up to date with your dental work, and any specialist care for conditions such as diabetes. If you are asked to go to reviews for conditions, such as asthma, then help your doctors to help you and make an appointment and go.
Out and about
Washing your hands frequently and avoiding hand to mouth activities will help you avoid infections. Take an alcohol gel hand sanitizer with you ( lots of products, try Superdrug or Boots for small sizes) and use it frequently-for example:
1. After using a supermarket trolley.
2. After strap hanging on the bus.
3. After you have had to open the outside door the public toilet by the handle after washing your hands.
Where do you go
The more often you are in crowds, the more likely you are to get infections. You must balance this with the life that you enjoy. By all means go to football if you accept the risk.
Work around things you can avoid- can you avoid rush hour transport, especially the underground? That would cut down your risk of getting respiratory infections.
Consider using the phone, e mail or msn messenger when you know someone is ill rather than meeting them.
Tell your friends clearly and often that you are susceptible to diseases. You may want to use words like “if you come and see me when you have cold I will get it. Please could you ring me first if you think you have a cold?” or even “if you come to see me when you have had diarrhoea in the last week I will get it and be much more ill than you. You don’t want that and I don’t want that. Let me know and I will phone you for a chat, then we can meet again when we are both well.”
We all want to be close to and hug our families, and usually this is fine. But sometimes you need to not have close contact to keep yourself well.
You will need to explain this to your family, something like- “I catch colds very easily- I don’t want us both of us ill at the same time,” or whatever your family can understand. Many younger children can be very responsible if you explain why you are behaving differently from usual.
If the grandchildren feel unwell, or ‘off colour’, or are behaving as though they might be sickening for something, then avoid close contact with them.
Get your family to tell you when youngsters have been vaccinated; get them to find out if the child has been vaccinated with a live vaccine. If the child has had a live vaccine then the child will be shedding live virus that you might catch and get the disease. You should not have contact with the vaccinated child until they are clear of the live virus. Medics can help as each vaccine should have warnings on how long the person being vaccinated will be shedding virus, so ask the child’s doctor or nurse.
Nappy changing is not your job. Dealing with or cleaning up poo (faeces) or diarrhoea is not your job. If you have to clean up poo or change nappies then wear disposable gloves if at all possible, and wash your hands thoroughly with soap after you have cleared away.
Eating well with CLL
By Yvonne M Jeanes BSc RD PhD
Senior Lecturer in Clinical Nutrition.
Eating well includes practicing good food hygiene principles and eating and drinking to maintain a healthy weight. A healthy diet provides adequate energy and nutrients to maintain normal body functions, it contains a variety of foods as no food contains all the essential nutrients the body needs. A balance of nutrients is required for health, we all need energy to carry out daily activities, however, too much fat can lead to obesity and heart disease. Adequate intakes of vitamins, minerals and dietary fibre are important for health.
For some people, weight loss or eating problems may be present, for those who are not eating enough, especially if they are losing weight, they will need more energy and protein in their diet. If you are losing weight you may need to eat differently to try and maintain your weight. Your doctor or dietitian may recommend foods that you would normally think of as unhealthy, but they have good reasons for doing this.
Macmillan 'Healthy eating and Cancer' booklet PDF download
Following a cancer diagnosis, many people want to make positive changes to their lives. Taking steps to live a healthier lifestyle is often a major part of these changes.
This information has been written for people living with or after cancer, who want to know more about a healthy diet. It explains why diet is important, and has tips on how to eat well and maintain a healthy body weight. It aims to help you think about what changes you may want to make, and help you put them into practice.
There are also answers to some commonly-asked questions about diet and cancer, and other sources of support and information, which we hope you’ll find useful.
What you can eat safely depends on how your immune system is. Your doctors will tell you.
To summarise - Avoid these foods
Any food or product that would give a healthy person food poisoning or an infection- out of date foods or infected foods, food not properly stored. If in doubt, throw it out.
And also do not eat or drink-
Unpasteurised dairy foods (milk, or foods made from unpasteurised milk), raw eggs, miso and other soya products.
Water from untreated sources- rivers, wells.
Raw and undercooked meat, poultry, sea food, uncooked vegetables, unwashed fruit.
Readymade salads especially in salad bars.
Shared foods where other people may have contaminated the food- dips, crackers and peanuts in public spaces.
Don’t use the same cup or eating utensils as other people when you are sharing a meal.
Join the active CLLSA on-line community of 1700+ CLLSA members to gain a diverse perspective, where there is frequent discussion and evidence/experiences shared by our members on the topic of diet and CLL.
Guidelines for food preparation.
Do not cross contaminate foods. For example, raw foods such as raw chicken should not come in contact with cooked foods. In a domestic refrigerator, the raw meats should be at the lowest level or in drawers where they can’t drip fluids onto other foods.
Have separate preparation boards; one for raw vegetables, one for raw meats, and others for the other foods that you prepare. Shops sell helpful sets, often colour coded.
Wash your hands thoroughly after preparing raw foods. Soap and water are fine. Clean down all surfaces and the utensils that you have prepared raw food with. First remove any fat and dirt with detergent and water, then hot wash by hand or in the dish washer.
If you want to disinfect a hard surface, you can use a spray made for the purpose. Or thoroughly clean the surface and make a dilute solution of ‘thin bleach’, I tablespoon to a gallon, wash down and leave to evaporate. If the surface is scratched, you can’t clean it. Consider getting a replacement for that old plastic jug.
Special care has to be taken with use of supplements as these may be contrary indicated, unproven to be beneficial and ineffective and costly if you are considering use of supplements or an alternative diet please consult your clinical specialist for confirmation of suitability.
Talk to your doctor about where you want to go and if they feel you should take the risk; best to do this 3 months before travel, if possible, and certainly before booking.
Again, this is risk management the choice is up to you after listening to the doctor’s advice.
If you go away-
Read the list of foods to avoid for neutropenic people (and seriously consider applying it to yourself while you are away; It worth risking traveller’s tummy for a salad).
Avoid street vendor foods such as ice cream.
You can normally safely eat/drink bottled water (check the seal is original some unscrupulous traders in poorer countries will refill old bottles with tap water) and manufactured carbonated drinks.
Only drink tap water if it has been at a rolling boil for one minute, and drinks like tea made from this water. Check with the hotel where the source of the water for the ice in your drink, or avoid ice. Freezing does not kill germs.
Brush your teeth with bottled or sterilised water, not tap water.
The rolling boil treatment kills cryptosporidium spores and many other disease organisms - Don’t forget to use this boiled water or bottled water to brush your teeth with. UK.Gov cryptosporidium
Camping and the countryside
If you have to drink the water from rivers or lakes, see the advice on cryptosporidium in ‘going abroad’ and boil the water for at least one minute at a rolling boil before using it for drinking or brushing your teeth.
Swimming, even in public pools, can lead to cryptosporidium infection as chlorine treatments are not effective against cryptosporidium.
Hot Tubs, saunas and communal baths
Bacteria that cause disease can thrive in hot tubs saunas and communal baths, they are not recommended for immunosuppressed people. But if you know that the hot tub is regularly and effectively disinfected you may choose to use the tub.
Places that produce fungal spores
Place that are always damp produce fungal spores. These are a hazard to people who are immune suppressed. If you have surfaces at home that grow black mould, then get advice how to treat and prevent this; it is an aspergillus mould that can cause serious lung problems.
Other places that have hazardous spores include compost heaps and animal bedding (horses, cows) and animal feed (Hay, silage). Get someone else to turn the compost, hay and silage; turning releases spores.
Gardening and farming, keeping pets and livestock.
As well as the problems with spore producing fungi, compost heaps, animal bedding and soil all contain other harmful germs. These can cause infections in people who are immune suppressed.
Keep the outside outside
Have a place for your outside overalls and gardening gear, boots and outside shoes. Take them off there. Don’t tread soil and pavement mess into the house- you can not disinfect a carpet.
For gardening, you can get farm overalls from you local farm shop that wash and dry well. Unattractive but tough, wearing the overalls reminds you to change your clothes when you come back in. Not cheap but hardwearing.
If you want to garden, then protect yourself by wearing gardening gloves and get someone else to dig, mow the lawn, turn compost heaps and soil.
Some animals that are often kept as pets can have germs that spread to people and cause disease.
Immune suppressed people should not have contact with young animals particularly cats under one year old.
If you have CLL do not help with animals of any kind giving birth- the risk of infection is high for you.
Diseases from animals can be difficult for doctors to diagnose as the diseases are rare. Your treatment can be delayed.
Animals in the house
1. Cats bury their poo with their feet and then walk on any surface. Even if they are kept out of the food preparation areas, they contaminate other surfaces.
2. Pet birds can give you serious but rare lung disease call psittacosis.
It is not your job to clear this up. Someone else has to empty the litter trays and bird cage. If you really have to do it, then wear disposable gloves, and an overall, wash thoroughly after the job.
Animal hazards can be judged by the animals’ diet, it’s habits and it’s health. Examples are given in brackets.
High risk meat eaters (cats, dogs) and omnivores (rats, pigs).
Lower risk vegetarians (rabbit, horse).
Contacts (poo)faeces then goes onto house surfaces (cat, dog, also mice see housekeeping).
Animals that poo in the house (pet birds).
Animals kept in water- fish, terrapins.
An animal that is ill, pregnant or giving birth is a high risk of infection. A sick animal is an infection risk.
It is reasonable to share with the normal housekeeping in a regularly cleaned home.
Avoid cleaning places with long standing dust and rubbish- again this can be a problem if mould spores are put in the air.
If you are planning to help with building work or re furbishing an old building ask your doctor if they can guide you about infection hazards, before you start.
As far as possible, keep your home pest free.
Mice and rats contaminate surfaces with poo and wee, and often have salmonella. Not what you want on your plates. Get rid of the mice and rats and stop any more getting in to the home.
Control flies, ants, cockroaches and other crawling insects.
There are many websites that will give you advice on getting rid of pests.