Sore Throat

[sun_flower]

I was diagnosed in December 2014 with Stage A CLL,I have had a sore throat for 2 days should I be worried,??

[AussieNeil Partner Administrator]

Any other symptoms? Are you running a temperature? Are your neck glands particularly swollen? Anything else happening out of the ordinary?

There's lots of lymphoid tissue in your neck to provide a first line of defence against infection, which is why a painful sore throat is the usual sign of a cold developing. If that's what you are coming down with, then there's nothing you can really do other than treat the symptoms, since it's a viral infection.

However if you do develop a cold then you do need to be more vigilant and be prepared to get prompt medical attention if if looks to be rapidly worsening, which may be due to a secondary bacterial infection for which antibiotics may be required. You can also get a rough guide to what extent your CLL is impacting on your immune system by observing how long it takes for you to get over colds compared to others that likely have the same cold and also whether it starts to take you longer over time too. That's been my experience.

Neil

[sun_flower in reply to AussieNeil]

Thankyou for replying so fast neil,No I havent got any other symptoms,I have been having green tea with real honey from a friends bees how ever i will be keeping an eye open,the last time I had a cold it took a month to go thats how I came to have blood tests,I had antibiotics for the last week last time that was in November 2014.

[AussieNeil Partner Administrator in reply to sun_flower]

Just be wary that raw honey contains bacteria and fungi and as Newdawn points out, we are more susceptible to infections compared to the rest of the population. Packaged honey is generally pasteurised in which the high temperature kills off the bacteria and fungi. You might get away with raw honey now, but I'd be wary, particularly if you have a very raw throat that could result in the bugs in the honey setting up an even worse throat infection and so on.

This is one of these situations where we'd welcome guidance from our haematologist/specialist. Should we go to the doctor early and risk picking up further infections or try and tough it out? Certainly as our immunity worsens with CLL progression and after treatment, we are potentially taking a great risk in NOT being checked out. It is worth reinforcing that you have lowered immunity when you next see your doctor and asking your specialist next visit about the state of your immunity and what you should do if you do feel ill. Just be aware that blood counts only tell part of the story; how often you get infections and how long you take to recover are also an important gauge.

At least in Australia, if you are coughing, masks are commonly either on hand for your use in the waiting room, or you are asked to request one (to protect other patients - but also providing some protection to you). I gather that's not the case in the UK.

Neil

[sun_flower in reply to AussieNeil]

No not over here in the UK,thanks for the warning about the honey i didnt know that,I will stick to paracetamol.

[Newdawn Administrator]

We CLL'ers are much more susceptible to bacterial, fungal and sinus infections than the non compromised but obviously the level of your compromisation is an issue because in the early stages more conservative therapy like paracetamol, lozenges and gargling can sort it. Is your temp ok?

I'd be considering how severe it was, did I feel ill generally and how are my present blood counts and immunoglobulin levels looking.

Any doubts and a visit to the doctor is advised. In an ideal world a swab would be taken but I've never yet been offered that. The general trend with CLL seems to be more of a 'belt and braces approach' which means giving antibiotics. These won't be effective if the cause is viral but they can address resultant secondary infections.

i don't know how advanced your CLL is nelliemay as the site won't let me access past posts at present but if you're worried and can get an appointment, I think having it checked out would put your mind at rest. I'm guilty of leaving things too long I'm afraid and seem to have low level cold symptoms quite a lot.

This is a dilemma we all seem to encounter...at what point should medics be consulted?

In an ideal world, access would be immediate but in reality, it isn't.

Newdawn

[Newdawn Administrator]

I was typing at the same time as Neil so apologies for duplicating some of the advice nellie. Hope you feel better soon.

Newdawn

[AussieNeil Partner Administrator in reply to Newdawn]

Newdawn, your advice was excellent and covered what I omitted. I also can't access previous posts and will report the bug.

Thanks for spotting it.

[Newdawn Administrator in reply to AussieNeil]

Thanks Neil,

Another oddity is the name of the person asking the question is different on my iPhone which confused me. The mail I received has sun_flower as the poster not nelliemay.

Newdawn

[sun_flower in reply to Newdawn]

sorry yes I changed last week to sun_flower.

[sun_flower]

Thanks Newdawn I was diagnosed with Stage A CLL in December 2014 ,all red bloods normal and a WBC of 11,so its all new to me.

[AussieNeil Partner Administrator in reply to sun_flower]

For an idea on how CLL is affecting your immunity, you need to check your neutrophil levels (these are normally the most common of your white blood cells) and track your Absolute Neutrophil Count (ANC) and your immunoglobulins/antibodies, i.e. IgA, IgG and IgM. Your neutrophils will be stated on your standard blood test, but your immunoglobulins (made by B-lymphocytes which are cancerous in our case and don't work) are measured less frequently, particularly if you are at an early stage.

My last white blood cell count was under 8, but I have more of the SLL presentation and neutopenia (low ANC), so most of my white cells were B-lymphocytes. You have to look at your complete blood picture.

Neil

[Newdawn Administrator]

Obviously it's not the whole picture but a WBC of 11 is barely beyond 'normal' limits nellie so I wouldn't be panicking too much at all especially with no other symptoms.

You need to be watching your Absolute Lymphocyte Count (ALC) for trends over time as a greater indicator as the WBC can rise and fall dependent on infection etc.

Keep on with the honey and lemon and hopefully it won't progress.

Newdawn

[sun_flower]

Thankyou x

[sun_flower]

its so confusing just trying to get my head around it

[splashsplash]

The hospital told me to take Ibruproven for a sore throat or any type of inflammation and alternate it with Paraceptamol throughout the day.

[sun_flower in reply to splashsplash]

Thanks,yes thats what I have been doing and it seems to be working so far,i was a pharmacy dispencer for 20 years and gave that advice but you have to be weary about the ibuprofen with certain stomach complaints,all those years and I never heard about CLL untill I was faced with it.

[sun_flower]

I still have a red throat after six days although not painfull now and hasnt progressed any further ?? not sure if this is down to my CLL,I am trying to be very hygenic.

[AussieNeil Partner Administrator in reply to sun_flower]

Hi Sun_Flower,

I guess you can take this as a good sign that your body still has a strong enough immune system to mount a good defence.

The old saying about "An ounce of prevention is worth a pound of cure" is certainly true of us with CLL and respiratory infections. After a while, taking hygienic precautions does become second nature - it's worth the effort.

I hope that you continue to improve.

Neil

[sun_flower in reply to AussieNeil]

Thanks for the reply Neil,its so comforting to know the community is there for each other, I am thinking about calling my GP surjury tomorrow because I havent been offered any other vaccinations except the flu jab,I know I was only diagnosed two months ago with Stage A but still I suppose its down to me to ask.

[AussieNeil Partner Administrator in reply to sun_flower]

That sadly seems to be the case - that we need to push to have (non-live) vaccinations. Just get over that sore throat first!

The pneumonia ones are probably the most important. Do a search here and you'll find that you definitely have to be proactive based on the experience of those in the UK and you'll also need to remind your doctor that they should be repeated after 5 years. That repeat used to be the case (in Australia anyway), but was dropped for the general population, but immune compromised folks like us are still given them with repeats - again free for Australians.

Neil

[Cllcanada Top Poster CURE Hero in reply to sun_flower]

nellie may

The old days of waiting to see if something gets better by itself are over, with a diagnosis of CLL. General rule of thumb, see your doctor within 48 hours for a proper diagnosis.

The pneumonia shot you want is the one used for children... Prevnar 13. The general recommendations of the CDC in the U.S. are to follow that shot with the adult vaccine... pneumovax 23 about 8 weeks later

See link here

cdc.gov/vaccines/vpd-vac/pn...

However, these recommendations may not be adopted in other countries yet.

~chris

[Colnegirl]

Hi! Sorry to butt in on this post. On the 29th March I developed a cough which had become so annoying that after 4 weeks I went to the doctors, who advised me it was viral and nothing he could do. Two weeks later I still have a cough, producing lots of green mucus, phlegm and now no voice!! I went to the doctors again yesterday and once again told it was viral, but he has taken some blood for testing this time. I am nearly 3 years post FCR and have found that coughs/colds are the things I find hardest to fight.

[sun_flower in reply to Colnegirl]

If you are bringing up coloured phlegm then you have an infection and need antibiotics l cannot imagine why you haven't been given them, get well soon

[AussieNeil Partner Administrator in reply to sun_flower]

Mucus colour is a good guideline, but reality is always more complicated, particularly when it comes to CLL patients .

webmd.com/allergies/feature...

'When you have a cold, your immune system sends white blood cells called neutrophils rushing to the area. These cells contain a greenish-colored enzyme, and in large numbers they can turn the mucus the same color.

But "you can have perfectly clear mucus and have a terrible ear and sinus infection," Kao says. If you do have an infection, you'll likely also have other symptoms, such as congestion, fever, and pressure in your face, overlying the sinuses, Johns says'

Note that if you are neutropenic, you won't have as many neutrophils available to change the colour of your mucus! So you may have a bacterial (or even fungal) infection and your mucus may not reflect that you have a secondary infection.

and later, when discussing nasal irrigation...

'According to the CDC, if you are irrigating, flushing, or rinsing your sinuses, use distilled, sterile, or previously boiled water to make up the irrigation solution. It’s also important to rinse the irrigation device after each use and leave open to air dry.'

Those precautions are extremely important for us in particular.

My search also turned up this interesting study, reported in the European Respiratory Journal, where the research team looked for disease causing bacteria in over 4,000 different mucus samples. They did indeed find that the colour was a guide, but it's not definitive:

"Just 18 out of every 100 samples of clear phlegm tested positive for disease-causing bacteria.

The study, published in the European Respiratory Journal, did not show that green or yellow phlegm warrants an antibiotic prescription every time, however.

Green sputum had bacteria in it 59 out of every 100 times, and yellow sputum had bacteria in it 46 out of every 100 times"

Abstract from the European Respiratory Journal

erj.ersjournals.com/content...

Reuters report on above paper

reuters.com/article/2011/11...

Good luck getting your doctor to actually request a culture, but if you don't get better without antibiotics you can now tell your doctor that based on this study, you still have an 18% chance of having a secondary infection despite having clear mucus - and maybe considerably higher depending on how neutropenic you are.

Neil

[Colnegirl in reply to AussieNeil]

Thanks for that AussieNeil, very interesting. I am hoping to get the results of my blood test today, so we will see what they come up with.

[Colnegirl in reply to sun_flower]

I thought that too, but apparently not. Hope you are feeling better sun-flower.

[PaulaS Volunteer in reply to sun_flower]

In my nursing days, we were taught that if phlegm went dark yellow, brown or green it meant that antibiotics might be needed. We even had little printed cards with the different shades of colours on, to compare with our patients' mucus! But as Neil says, opinion on that has changed. Even with clear mucus, an infection might be present.

The key thing is what SORT of infection we have. Most "colds" are viral infections and do NOT respond to antibiotics. However, if the cold doesn't get better after a few days, bacterial infections often jump in and add to the problem... For CLL patients, antibiotics might then be helpful. But they might not be - they might just give us side effects and help resistant strains of bacteria to increase.

There are enormous problems these days, with increasing resistance to antibiotics. This is largely due to them being used far too much - often when not needed. We need to be given the appropriate antibiotic... Ideally swabs should be taken, to identify the precise bacteria or fungus causing the problem. (But I realise many doctors are reluctant to do this. Also, results of swabs take some time to come through).

I realise that ALL people with CLL have damaged immune systems, even in early stages. But for CLLers in early stages who still have reasonably good immune systems, it's probably better not to have antibiotics too quickly.

There is a balance to be found in all this, and it isn't easy.

Paula

[sun_flower in reply to PaulaS]

Same here when I was a pharmacy technitian we always used the rule that if the mucus is green or yellow then in infection is there but again I guess for us with CLL it do not work like that ,by the way i know I have non aggressive stage A CLL but I have noticed I have been so tired for the last couple of weeks?I did have an IV AA infusion so maybe thats why,so confused .com.Maggie