It was first noticed at the hospital that I have low neutrophils in 2011. No one told me then though. It was a few years later that my GP noted it and referred me to haematology. They did some general tests and then discharged me. I think they were about 1.5 then.
Later on my GP noted my neutrophils had reduced to 0.95 and referred me back to haematology and I was monitored. When they got to about 0.8, they did a BMB, which showed I have low risk Myelodysplastic syndrome (MDS) symptoms, but not clear enough to diagnose it. The plan is I have another BMB if/when my other bloods reduce. My bloods are now monitored annually.
A couple of weeks ago my GP arranged a full blood count and my neutrophils were 0.51.
I currently have a sore throat and feel generally unwell. My temperature isn’t elevated yet, so I understand I don’t need to take any action. I feel so anxious about sepsis now though and annual blood tests by haematology feel such a long time apart. Is anyone else in a similar situation?
It sounds like your GP is keeping a good eye on you which is great. However, I think we all understand that worry of feeling unwell and that appointment feeling such a long way off.
You seem to have a good understanding of what is an emergency for you but even so, if you are at all concerned I would definitely suggest calling your GP or your haematology team to discuss this with them.
It’s hard isn’t it, because sometimes we feel like we are being over anxious and worry about bothering people. That be the case with you but I know I felt like that for a while. As time went on, I just decided a call was better than me sitting worrying.
I have a different blood cancer so hope others may be able to share their experiences. It may also be worth you giving the helpline a ring to talk things through. I have copied the link below.
Thanks so much for replying. It’s good to know there are people who understand. I feel so fortunate compared to many other people.
My GP practise is excellent. The blood test was for something else though. They rely on the hospital to monitor the neutropenia. I might have a word with the GP about more frequent blood tests than annually with the hospital.
Thanks so much. I really hope you get the care and support you need. X
You seem to be very aware of looking out for red light symptoms if you are neutropenic. I have had neutrophils at around the same level as yours for over 17 years. It is worrying of course but I have always taken preventive measures -not being in crowded places, not being in close contact with anybody with obvious symptoms of coughs and colds etc. As a result I think I’ve only had half a dozen infections, only 2 of which were confirmed by lab test as bacterial which fortunately meant getting the exact antibiotic required. Obviously for viral infections, no point taking antibiotics! Covid was obviously a big worry. Indeed probably more so these days as people don’t test themselves and can spread it about!
Have you tested yourself for Covid? That’s worth doing as your Myelodysplastic syndrome (MDS) diagnosis should mean you will be eligible for anti-viral treatments but it has to be started within the first 5 days.
If your GP is as helpful as you say, maybe they could arrange a sputum test if you have a cough as that can be tested to see if it is a bacterial infection? This will save you being given unnecessary antibiotics.
Thanks so much for that Chrissy. That’s very reassuring.
I’ve been feeling very gloomy thinking I’ll have to stop everything I enjoy doing - dance classes, theatre etc. Do you still do things like that or are they too risky now?
It’s lovely to see the helpful support being shared here! And I’m sorry to hear that you’re feeling gloomy @Liz5. It’s a tough balancing act, isn’t it? Staying healthy physically (like avoiding infections) and staying healthy mentally (by not giving up activities you love).
Just wanted to pop in and mention that we have a free Blood Cancer Infection Alert Card that might be useful - it’s a pocket-sized guide with information about infection symptoms to look out for, what to do if you think you have an infection, and advice on what to say if you go to A&E. It also has space to write down your own symptoms and personal details to show medical staff.
Worth having in your wallet or sharing with family members.
Hi @Liz5 @Ceri_BloodCancerUK has sent some really helpful info. It’s certainly a dilemma balancing your risk of infection against missing out on things you enjoy. Everybody has a different approach to risk aversion so you’ll find your own compromises.
Re the current flu and Covid levels, there seems to be advice about wearing masks in high risk situations and I certainly would do that in crowded shops, public transport and theatres. I just find that when I get an infection it just goes on and on and it’s very wearing coughing all night and not getting much sleep! So I’d personally prefer prevention over cure -especially as there isn’t always a cure if it’s viral!
I wish you well.
Hi, I have recently been diagnosed with low neutrophils. I travel a lot and before my flight I always use Vicks First Response, so far I have not had a sniffle where as before i always seemed to go down with a cold, it works for me but I cannot say it will work for anyone else, just thought I would share this with you.
And I’m sorry to hear that you’re feeling gloomy