Many blood cancers are associated with damage to our immune systems. This can happen even before you are diagnosed, then gradually get worse during watch and wait, and treatment can further affect our immune systems.
What I mean by that is that our immune system is not as good as the average person. This doesn’t mean we have no immunity. And the level of damage at the early stages might not be huge. But sadly even if we don’t need treatment this will gradually get worse for people with some blood cancers.
As such infection prevention and treatment are the most important things you can do. No need to go crazy about it though. But simple habits like washing hands often, and only ever drying them with a paper towel (cotton towels and air dryers just pass on germs) as well as implementing a six feet exclusion rule around anyone who might be sick, and being a bit more aware of what we eat (and who made it!) can all help. (Here is a link for some advice on food safety, though some of these tips are only needed for people who have more severe immune problems https://www.ouh.nhs.uk/patient-guide/leaflets/files/31235Psafety.pdf )
To be honest most of this advise is good advice for anyone Even if they don’t have a blood cancer. And by following it I’ve managed so far to avoid catching any flu or colds this winter despite several of those I live With going down (and the fact that for me post treatment my immunity is pretty poor). To be fair for other reasons I’m not going out much so that may help too. Hope I’ve not put a jinx on myself by saying this now!
Immunisations should be up to date for everything except live vaccines (so no shingles in the uk unless you decide to pay to have the new non live one shingrex privately). And for those who live with him you can also get free flu vaccines on the NHS to help prevent him from getting the flu. The pinned post on the subject from health unlocked can be printed and taken to your GPs nurse. If you are not sure if your blood cancer is one that can affect the immunity ask your hospital doctor or nurse or read the information on specific blood cancers.
But none of this should be done in a huge panic as many people with chronic blood cancers don’t get infections for years and years after diagnosis.
But if you do get an infection most experts agree that there should be a lower threshold for treatment with antibiotics in people with immune system problems. In other words where most people even if they had say a bacterial throat infection don’t really need antibiotics to get over it, people with certain blood cancers are advised to be more ready to take them.
This means of course learning how to navigate the uk NHS. Not sure if your hospital has an out of hours nurse advice line for blood cancer patients it’s something that can be invaluable if you do end up with issues, but it’s also something that in the Uk only the bigger hospitals with real blood cancer specialism tend to have.
At UCLH where I am treated if I am concerned I can call up a nurse on one of the haematolgy wards at any time of the day or night and get advice as to what is the best way to go ie do I need to come in and be seen by one of the specialist haem doctors in A and E or will a GP appt in the morning be fine. Hopefully you won’t need a service like this at all in the early years of this disease but it’s definitely something worth looking into.
Depending on where you live you could get yourself referred to a specialist centre which tend to be in the big cities.
Being under a specialist centre probably doesn’t make a huge difference early on but it can be so helpful if and when treatment is needed. So for example right now the NHS tends to offer only FCR chemotherapy first line to most patients with CLL. But if you are at a specialist centre they can also offer enrolment into clinical trials which offer some of the newer more specific treatments. I was treated in the FLaIR trial tho it looks like that will be finished enrolling in a couple of months.
Do Make sure you get good travel insurance before going oversee and that they know of your condition. Supposing an infection did happen you wouldn’t want to find the insurance was not valid and didn’t want to pay out. Again this is a belt and braces thing. But an important practical measure. You may have to shop around for a reasonable price.
Working out now how easy it will be to access a GP appointment if you need one in the future is really important. Some GP surgery’s have online booking systems and hold back appts for the same day (mine for example release them at 07:15am and you have a mad scramble to book one). Find out how it works at your surgery and if yours is one of those that won’t let you be seen for two to three weeks consider changing. Again this is something you might not need to five years but could be hugely important at the time.
NHS 111 is becoming a bit more useful in some areas and can often be the access point for a Saturday or Sunday GP appt in some areas.
Most experts would advise anyone with certain types of blood cancer who has signs of any infection to get it reviewed quickly. And if there is a temperature over 38C /100.4F many experts advise a review in hospital A and E should take place. Although in the vast majority of cases even a temperature will not be anything to worry about. But they can screen you, perhaps do blood and X-ray, maybe even confirm flu by a throat swab and then hopefully send you home with antibiotics if you need them.
I really hope this doesn’t sound doom and gloom because it is not meant to. Chances are good that if on watch and wait you won’t need to use any of these tips for a long time. Certainly I wouldn’t worry about reading up about treatments too early as they are changing rapidly and so if it’s five or ten years before you needs treatment then other treatments may well be being used. But it’s worth saying we do have great treatments already that work really well.
For many people their lives carry on as normal and even infections don’t seem like a problem to them.
What infection prevention tips have you used?
It is such an important topic, infection control. It would be interesting to know how people find incorporating this into their everyday lives, this often does come up on our helpline- people looking for advice/tips on what they can do to protect themselves.