Hello all!
We asked in a recent poll, which topics this community would like to see for our ‘Ask the Nurse’ threads, and six weeks ago we covered Fatigue, this time we are covering Infection.
You may want to ask about things like symptoms of infection, what you should do if you have an infection, managing infection risks, or anything else related to infections.
So, if you have any questions or concerns on this topic please do use this space to ask the @BloodCancerUK_Nurses and we will do our best to answer them for you.
(Do note that our Forum is not monitored 24hrs a day, and so if you do have an infection or think you may have an infection, please contact your GP or Haematology team. If you are on active treatment, call your 24hr Helpline.)
Hello@BloodCancerUK_Nurses my question is regarding the 4 month testing for Monoclonal gammopathy of unknown significance (MGUS) I have IgG kappa which is rising 14.40
.The Immunoglobulins test shows that the IgG is 15.80 normal range 6.00 -16.O0.
IgA 1.88
IgM 0.55
The report on the bottom says that I have less than 5g/L functional IgG and may be at increased risk of imfection.
How is that worked out and what does it mean in real terms about “may be at increased risk”?
Thank you
Feeling More Prone to Infections After Treatment (Tonsillitis Again!)
Hi Ask the Nurses,
I wanted to tell everyone a bit about my experiences since finishing treatment six years ago. I do feel that I seem to get sick more often, especially with things like chest infections. I never used to get them, but now I’ve needed antibiotics at least once a year ever since having treatment, having never had them before.
Last year, I had a CT scan that showed activity in my tonsils and I went into a panic thinking it might be a recurrence of my lymphoma. Thankfully, a biopsy confirmed it was just another infection.
And wouldn’t you know it, I woke up earlier this week with tonsillitis again! I thought it was strange because, I had them out when I was five, but aren’t I the lucky one as mine have started to grow back! ( happens in about 10%cases) as well as my thyroid that I also had out ! If only I could grow healthy blood cells for myself ! Nope I will just regrow useless tissue
I’d be interested how everyone else has fared after treatment, how have you been more proactive for prevention? Or about spotting signs and symptoms early on?
Wow @Jules I had no idea tonsils and thyroids could grow back! This forum continues to help me learn something new every day, thank you for sharing that wisdom. I"m sorry to hear you’re going through tonsillitis again. Do take it easy and rest well, I’m sure you know the drill!
Hi @Bannanacake,
I do hope you are well? I am no expert in this area and I would encourage you to have a chat with your team about this. For some context, immunoglobulins have different actions and IgG is part of our bodies antibody response to infection. When certain immunoglobulins are low you would have an increased risk of picking up virus’/infections and they might get worse quicker than they would in someone with a healthy immune system, meaning antibiotics may need to be used more frequently.
I am sure I haven’t said anything you do not already know and a more detailed chat with your GP or consultant would give you more clarity around this.
Best Wishes,
Heidi J (Support Services Nurse)
Hello @Bannanacake
Wow - what a question! You’re certainly challenging my small brain cells here, but it’s a really great question, that I am sure many people will want to know about this for themselves as well.
A very basic and quick answer to your question is that our bodies need a certain number of fully functioning immunoglobulins and white blood cells to be able to fight off infection. If you don’t have enough of one type it (for you this would be your IgG) or you have mutated or immature white blood cells, then your immune system will be compromised against infection, and might not be able to overcome it easily or at all. It’s like going into battle with only the Army, when really you need the Air Force and Navy too!
In terms of what it means on your blood report, “may be at increased risk” this is rather a general statement to alert the healthcare professional to have consideration when treating you or speaking to you about your health.
I think the words “may be” are used, as individual infection ‘risk’ is so very difficult to 'quantify (and we realised this with Covid, when some people in the same households did or didn’t catch Covid) as there are many other factors that need to be considered, so just because you have abnormal or few IgG counts, does not always mean you will catch or be at risk.
Factors that influence the extent and severity of an infection are amount of infection, route of entry, and virulence, and also, competence of the individuals immune system, previous exposure to the infection and existence of co-infection. As the lab don’t really know the levels of the other factors, they can’t really 100% say you are at risk.
Each immunoglobulin (Ig) and each type of white blood cell have a certain role in fighting infection. An immunoglobulin is basically an antibody that can ‘connect’ to an infection
There are four subclasses of IgG, one IgM, two IgA, one IgD and one IgE, again they all do a slightly different job. IgG is a very important type, firstly because there are more of them and secondly because they are able to change into other types, thirdly they can mobilise everywhere in the body. All Igs have specific receptors on them, so attach themselves to specific infections and take it along to be destroyed by the white blood cells, either neutrophils or lymphocytes.
If I visualise in my head in cartoon form what happens, in very simple terms, I see the infection (antigen) as a ‘baddie’ and the immunoglobulins (antibody) as a policeman or soldier. Each antibody carries a specific ‘wanted’ poster with them. The antibody arrests/captures the antigen and drags it along to the chief of police (a white blood cell), who is not very kind. The white blood cell, depending on the type, will decide the fate of the 'baddie. It will either eat the antigen or ‘explode’ it.
Obviously the whole blood and immune system is incredibly complex and it’s not quite as simple as I have described, but hopefully I have managed to explain some of it (or may have confused you even more).
Do ask if you need something more clarifying, and I will try my best
Heidi.
Hello @BloodCancerUK_Nurses, thank you for offering these spaces to ask you stuff. Such a great idea.
I’m wondering when those of us living with MPNs, such as my Polycythaemia vera (PV), need to do more about infections than just taking a painkiller like ibuprofen? Because these chronic blood cancers can be so tolerable, and yet we live with numerous daily symptoms like the fatigue and foggy thinking and so on, how do we know when to seek out specialist care? When is an infection ’serious’ as opposed to just another headache, for example?
It seems like there’s always some mysterious physical stuff going on around my body with Polycythaemia vera (PV)! It’s hard to differentiate when it’s normal side effects to treatments like hydroxyurea and when it’s potential signs of infection.
I’ve got a thermometer to check if I’m developing a fever, and already take daily aspirin so am wary of popping another NSAID too often due to bleeding risks. I have monthly blood tests so I guess they’d catch signs of infection in my blood.
Thank you for reaching out on our infection thread. It sounds as though you are already very vigilant with any changes in your health and that is so important.
I would say the most important thing is to listen to your body, if you feel something isn’t right you must always raise this with your treatment team.
You should have access to a 24 hour helpline? It is really important that you keep this number to hand and do always use it with any concerns. Having a thermometer to hand is so important, when you ring the helpline they will ask for a temperature reading, this gives a good indication if there is an infection brewing. Blood tests are great and tell us a lot about your health but listening to your body is key and if you notice new symptoms or you begin to feel unwell you must raise this as soon as possible.
With regards to medication, I would encourage you to speak to your treating team particularly about the use of NSAIDS, some haematologists would discourage the use of these so do chat to them with regards to your individual circumstance.
Thank you so much @Heidi-J-BloodCancerUK, this is very helpful and reassures me that I’m doing enough.
Funnily enough I contacted my haematologist (about my first nosebleed) and he reminded me to take acetaminophen rather than another NSAID for headaches and other pains, just like you! Great minds…
I think, for me an issue around infections is that I just haven’t had many in my life and the ones I have had were so pronounced that it was obvious I needed medical care. I’m thinking of the random kidney infection I got before diagnosis with Polycythaemia vera (PV), or a time a had a lymph infection which I could see and feel through my skin.
I do have 24-hour support and nearby emergency hospitals plus local health centres and apparently even my haematologist at the end of an email who replies swiftly, and of course lovely folks here. I feel very supported and know what to do in the case of an emerging infection now, so thank you again!
I haven’t posted for a while… I had treatment for Acute myeloid leukaemia (AML) last year, with a Stem cell transplant in September. So I am 11 months post-transplant. I hadn’t expected to feel quite as rough as I do, almost a year on! There is so much about my ‘old life’ that I simply cannot resume anytime soon.
My consultant tells me I am untypical as I have had repeated viruses and infections since coming off the Ciclosporin in December. Just as I start to make a little progress, something else hits me. So my blood count isn’t anywhere close to normal, which of course, triggers my anxiety about relapse! Although the doc says I am not. So finally, it seems he is referring me to immunology to see if they can help, possibly with immunoglobulin infusion(?). And I guess there will be a long wait…
This seems to be my ‘trade off’ thing following transplant, and I am learning that many of us have to learn to live with a longer term effect of Stem cell transplant. I truly have never had so much illness back-to-back. So I am wondering if there is anyone out there who has encountered this too, and give me some hope that I WILL, one day, feel better again!??
That said, I am beyond grateful to even still be here. And if this turns about to be my ‘trade-off’, I guess I’d have to say I’ll take it on the nose…!
Hi @Ledgell,
Great to hear from you again, we are sorry to hear that you aren’t feeling too good and are having problems with repeated infections.
We can imagine how this must be frustrating for you, but try not to put too much pressure on yourself to feel a certain way. Fatigue from transplants is very common, and unfortunately there is no ‘set time’ frame for when this may resolve as everyone is individual. Some people may start to feel as though they have more energy after six months, but for others this can be a bit longer. Anthony Nolan have a page on this that you may be interested in How to manage fatigue after a transplant | Anthony Nolan.
We can imagine that it can be anxiety provoking if your blood count is not where you expect, but it is reassuring that your doctor has said you remain in remission. Immunoglobulins (or IVIG as it is know) contains antibodies that help to fight infection, they are usually given intravenously through a cannula, these should help boost your immune system and hopefully reduce the likelihood of infections. You will likely be given these on a day unit and would usually have these at periodic intervals i.e. every 4 weeks etc until your haematology team are satisfied with your risk of infection/ blood counts.
We hope this helps and if you feel you need further support from us, please do not hesitate to call us on 0808 2080 888.
Take care & best wishes,
Emma (Support Services Nurse)
