Hi everyone, I haven’t posted for a long time but I do always check here for answers to any questions I have.
I have Chronic lymphocytic leukaemia ('CLL') and I’m on watch and wait, I’m healthy and well and manage my sleep, diet, activity and adjust things if I have fatigue.One thing I have noticed is that I’ve been getting nasal mucus / sinus issues / upper respiratory congestion for a while now, especially after long hikes or more strenuous walks. . Does anyone have any tips for coping with this?
Hi @Gingercatmum, good to hear from you. It sounds like you’re doing a good job of managing your health and balancing things.
Nasal congestion and sinus issues do seem to come up fairly often for people living with Chronic lymphocytic leukaemia, from the bit of research I’ve just done. If it’s been going on for a while, it would be worth mentioning to your haematology team so they have a note of it, even if it doesn’t feel urgent.
Hopefully some of our members with direct experience of this will see your post and feel able to share what’s helped them. I would bet that our lovely @Erica and @GenesisDevice would have some words of wisdom.
Hi @Gingercatmum great to hear you again and as @Ceri_BloodCancerUK says you certainly are managing your symptoms so positively and well.
I was diagnosed with Chronic lymphocytic leukaemia ('CLL') 22 yrs ago and have always been on active monitoring.
I cannot say I have had any problems with nasal mucus/sinus issues or upper respiratory congestion. Over the last probably 10 yrs I have had vertigo sometimes which I have put down to ear wax which I thought I got due to wearing ear buds/Walkman, I am also a keen walker (I am not a medical person).
I believe in checking symptoms out with my medical team.
Please do let us know how you get on. Really look after yourself.
Thanks for taking time to send in your post, its lovely to hear from you.
As @Ceri_BloodCancerUK mentioned - both @Erica and I are Chronic lymphocytic leukaemia ('CLL') patients.
Like you, i am healthy and well and manage a good sleep pattern with a good diet and also exercise - and these seem to be the vital things we should do. I did have head cold symptoms for over three weeks a few months back, and put the inability of my body to shake off the effects down to the condition. Eventually the symptoms subsided, but it was frustrating at the time and quite draining.
You mention that you’ve had nasal mucus / sinus issues / upper respiratory congestion for a while now, especially after long hikes or more strenuous walks, but i haven’t experienced that myself. I do just over 4km on a treadmill when at the gym, but i don’t walk much outside as my wife has very bad arthritis and is waiting for new knees. So when you talk about a long hike - im not sure if my 4km qualifies as long compared to what you do.
Ive not come across anyone with Chronic lymphocytic leukaemia ('CLL') mentioning this before so I’m at loss to a degree, im not sure if @Erica has, either way i would bring the matter to your medical experts attention to be on the safe side.
Hi @Gingercatmum Sorry to hear you have been having sinus congestion problems. I have had them for years and so I have a lot of experience in living with them and trying to manage them. I have had a diagnosis of Essential Thrombocythemia (Essential thrombocythemia ('ET')) since Fall 2025–this condition does not seem to affect the sinus congestion, but I do believe that I am more likely to feel fatigued more quickly when sinuses are bad.
I like to try to identify triggers. For me, I will get worsening symptoms when rain is predicted, then symptoms get better when it actually rains. I am also quite affected by air pollution. I have a handy app that I use, called “Plume Labs”. It provides reports and forecasts on a variety of types of air pollution, including nitrogen dioxide, ozone, and various particulates. It also reports on various allergens. We have ordered an upgraded home air filter that is rated highly to catch some of the allergens and pollutants.
I have a system that works for me that does seem to help. I do it first thing in the morning, and again in the evening. I use a product called “Simply Saline”, it shoots a stream of saline (salt) water up into the nose. It really cleans out the gunk and moistens the sinuses. It doesn’t hurt or sting. I then blow my nose gently and rinse in the sink. I recently saw an ENT doc and he prescribed a nasal steroid spray (I have taken that for years) but also a nasal antihistamine spray. In his view that combination is much better than taking oral antihistamines (although I do take that over the counter).
With all of this I am having much less difficulty with the sinuses, but I think it’s likely to be with me for the duration.
Thanks so much for taking the time to reply. I’m going to look up this app. I do use sterimar sinus spray and it does help, I’ve found a natural sinus rub from Nesbitts that gets good reviews from people who have used steroid sprays for years so I’ll let you know how that goes! I’ve seen a GP who thinks I have allergic rhinitis but I think the triggers are more likely to be exertion and changing temperatures, it’s also worse when I’m run down following a cold and it also makes me feel fatigued. The GP wants to ‘throw everything at it’ (his words) before referring me to ENT as he doesn’t think it can be related to having blood cancer so I’m going to try some natural remedies and then maybe try to get an appointment with my preferred GP.
I also can get a post nasal drip if I’m fatigued, which I don’t think is good for anyone with blood cancer.
I hope you continue to manage your health well and thank you for your tips and advice.
Thanks for your reply. I think exercise and walking is all relative to where we’re all at at that moment in time so 4k counts as a long walk! I hope your wife has some treatment soon so you can walk outside again.
Yes - 4km isn’t too bad (but it is in a nice warm gym so its not too bad i guess) but i feel its something worth keeping up. Its only walking, my running days are behind me I’m afraid.
Ahhh, the post nasal drip is a bummer! I keep a water bottle filled with ice and sugar free/caffeine free ginger ale to sip all day. That seems to help wash away the gunk and also replace what can sometimes be foul tastes with the carbonation and sweetness.
I am in the US and my primary care doc actually prescribed the nasal steroid, fluticasone propionate. Maybe your primary care doc could give that a trial. It reduces inflammation and I think helps regardless of the cause. I am new to the antihistamine nasal spray (Azelastine) but I am noticing helpful additional relief.
I think that anything that gives us difficulty breathing is likely to worsen these conditions. Hang in there!
