Self Help; Managing your health.
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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
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
Any one 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,
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
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
I have selected the most useful sites that I can find, (April 2011)
things change fast over time. As we get more knowledge, the sites
may become inaccurate. Some of the sites are commercial; inclusion
of their site is not an endorsement of the product. CLLSA has no
links with the manufacturers but their sites are currently the best
way of providing the facts.
Some of the facts
and links on this page will apply to you, some will not. Risk
management is about knowing where the risks are and if you are
willing to take them. You have to decide for yourself.
If you have
medications for any condition take them as directed by your medical
Take any medicines
that you have been given to protect you from infections-
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
For other problems-
NHS Direct- 0845 46 47 a 24 hour help line.
if you have not
visited the site already, check it out. (April 2011)
GP Surgery- keep the number by your telephone.
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
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 partnership.
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. 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.
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.
patients may not get the full protection from vaccines, it is
recommended that are vaccinated.
Influenza vaccine -is recommended annually before the influenza
Pneumococcal vaccine is recommended for all patients.
and children in the household should receive inactivated (injection
form) of polio vaccine rather than the oral (live virus) vaccine.
Consult the child's doctor (paediatrician).
CLL patients should
never have live vaccines- do not have shingles vaccine or
chicken pox vaccine they are live vaccines, as are some others.
If you have had a
stem cell transplant, then your new immune system will need to
‘learn to recognise’ all infections from new- a list for recommended
and forbidden vaccines that applies to all stem cell transplant and
all CLL patents is
Your own immune
status must be determined by your own doctors. There are no rules
that say that a new CLL patient does not have a damaged immune
system or that at 6 months after chemotherapy your immune system
will have recovered. Unfortunately, there are many people who have
damaged immune systems many years after chemotherapy.
If you have not had
a stem cell transplant, you will probably still have immunity from
any vaccinations that you have had before. We all need new ‘flu
vaccine every year as the ‘flu virus changes.
Professor Terry Hamblin has written a great deal
about vaccines and CLL patients- his blog is at
http://mutated-unmuated.blogspot.com/ and is searchable.
He also posts on ACOR
Simple ways to protect yourself from harm
You won’t get ‘flu
if enough of the people around you are immune. So when there is a
‘flu epidemic, ask your family and the people that you see most
often to get vaccinated. This will cut down your chances of getting
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 the health care
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
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
using a supermarket trolley
strap hanging on the bus
you have had to open the outside door the public toilet by the
handle after washing your hands.
Where do you go
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
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
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.
There are many sites
that will give you lists of foods that are inadvisable for people
who are very immunosuppressed. If you run a search or go to
for example, you can get an overview of foods that may give you
infections. Another term to use to search is neutropenic.
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.
from untreated sources- rivers, wells.
and undercooked meat, poultry, sea food, uncooked vegetables,
Readymade salads especially in salad bars.
foods where other people may have contaminated the food- dips,
crackers and peanuts in public spaces.
use the same cup or eating utensils as other people when you are
sharing a meal.
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.
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.
A good site is
and other pages there.
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.
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).
street vendor foods such as ice cream.
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.
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.
your teeth with bottled or sterilised water, not tap water.
- the rolling boil treatment kills cryptosporidium spores and many
other disease organisms- check the site above, and don’t forget to
use this boiled water or bottled water to brush your teeth with.
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
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
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.
animals can be difficult for doctors to diagnose as the diseases are
rare. Your treatment can be delayed.
Animals in the house -
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.
Pet birds can give you serious but rare lung disease call
Animal poo -
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.
meat eaters (cats, dogs) and omnivores (rats, pigs)
Lower risk -
vegetarians (rabbit, horse)
then goes onto house surfaces (cat, dog, also mice see
that poo in the house (pet birds)
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.
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
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.