sinus infection and nose bleeds.

[maggiewillow]

Hi everyone,I live in the UK and have no support whatsoever for my CLL,the DR at the hospital took bloods and just said "oh yes you have Leukaemia"that's it,I have apparently had it now for over 10 years this is after years of complaining of exhaustion.I am on Watch and Wait and have 3 monthly blood tests,There is no-one here to talk to,no nurse.I am writing this post as I have for a few years now suffered from blocked sinuses and nose bleeds but only when I sleep. Is this one of the CLL things ? has anyone else experienced this?.It is lonely and worrying having no-one to talk to about my anxieties.Thank God for this site.Best Wishes to all Maggie x

[mrsjsmith]

Hi Maggie,

Sorry to hear you are not getting much support ! I was originally diagnosed in 2007 and went straight to chemo as I was fairly poorly then. About 5 years ago I started having sinus, ear and eye problems. Took some time of seeing GP and trips to A&E before they started to take it seriously. I started by getting an ENT appointment and Haematology put me on monthly IVIG. You will need to start with your GP and ask for an ENT referral and discuss transferring to a different hospital for another Haematologist ! Where in the UK do you live ? Someone here should be able to suggest a name.

Regards

Colette

[maggiewillow in reply to mrsjsmith]

Thank you for answering.I live in Hastings and basically they just leave us to get on with it.I have just registered with a new Dr as my old one was useless.I am pretty low on the scale with my C.L.L. S my w.b.c. Has never been higher than 17 though I have other health issues I've re accuring carcinomas which needed surgery.My exhaustion is my main issue I am only 67 yet have no energy.Thank god for this site as I have no one else to talk to if I have health worries.Thank you again.Maggie x

[mrsjsmith in reply to maggiewillow]

Hi Maggie,

Lovely part of the country but not surprised with your exhaustion as parts are very hilly !

Good start by changing GP’s and hopefully you will get a good one. I found my dream GP eventually, but I am lucky being in a large London practice. I would start by running through all your concerns with your new Doctor.

Colette

[Hidden in reply to maggiewillow]

In some areas of the U.K. it is protocol to not have consultant referral with CLL until wbc gets to 30. Good that the GP is monitoring and bad that few GPs know about the effects of CLL. So a lot of banging your head against the wall to come.

After being diagnosed with CLL and treated the following year, I now know that my appalling sinus problems that I’d had for years were CLL related. After FCR treatment no sinus or ear infections.

Sorry but you’ve got to just keep going back until he decides symptoms not blood work are enough to send you to a haematology consultant.

[AussieNeil Partner Administrator]

Your doctor should be checking your blood test results and letting you know if there is any concerning change in them and arranging an appointment with a haematologist. Hence I suspect your CLL is not the cause of those symptoms that only happen at night. Could it be that you are allergic to something in your bedroom?

Nose bleeds could be a sign of falling platelet counts, but do you have any other signs of low platelets? Easy bruising, bleeds from cuts taking longer to stop, tiny red spots under your skin?

Do you have a copy of your blood test results to check your platelet and neutrophil counts (the latter to indicate your risk of infection)? I really suspect you have another cause for your symptoms besides CLL, which seems quite stable.

Neil

[eric72]

Hi Maggie, I to suffered from repeated sinus and eye infections. Cll causes low immune system hence the infections. Eventually my consultant put me on long term antibiotic Doxycycline and I have been infection free for about 9 months now. May be worth mentioning at your next appointment.

[maggiewillow in reply to eric72]

thank you Eric. I have had my nose quarterised yet it has made no difference.I don't like the idea of being on anti biotics long term.I don't have a next appointment and just have to keep an eye on my blood results myself.I have had cancer 4 times now and had surgery.I also have a heart condition and was diagnosed with H.P.V. Which causes cancerous growths.The Dr said 80% of us have the H.P.V. Virus and it is because of my low immunity that I keep getting growths.Thank you again.

[stunned]

Hi Maggie, sorry to hear you have no support. Have you been given the Macmillan number, and before you panic, they are not only for respite and palliative end of life care. They can help with so many things, finances, support, booklets with recipes, tips re sleep, fatigue, how to talk to family and friends etc. They have a phone line open 8am to 8pm as well as offices in many hospitals.

I am also on W&W, although I am due tom start treatment on next few weeks. I suffer with blocked sinuses and nasal passage and find they usually blocked with bloodied scabs. I have never associated this with CLL but will mention it at my next appointment next Thursday.

Because we breathe through our noses , it is the first place and germs and bugs get into and if we are immune compromised and susceptible to infections, it makes sense that sinuses will be first to suffer.

Doxycycline antibiotics don't suit everyone and I suppose it depends on what other medications you are taking. Talk to your new doctor, ring Macmillan and explain your concerns, they can probably help get you in the right direction re your concerns.

Best wishes Anne.xx

[UKfulloflife]

Hi Maggie

I also suffer from frequent sinus infections, but I have mostly managed to keep them at bay by using NeilMed Sinus Rinse twice a day. This was recommended by a consultant, and I have to say, it really has helped me. I would second contacting Macmillan. They are very helpful and will offer you all the help and support they can. The other thing to look out for is a Maggies Centre. Unfortunately your closest one at present seems to be in London, but if you can summon up the energy, you would find it very worthwhile to pay them a visit. Check them out online: maggiescentres.org Hope you manage to get the support that you need. xx

[maggiewillow in reply to UKfulloflife]

Thank you so much i will do that.

[luckyackerl]

Hi Maggie,

I see Dr Grace Consultant Haematologist at Eastbourne General District Hospital. He is excellent! Have been under his care for several years, had BR two years ago and bloods still normal today. Good luck and be persistent!

[maggiewillow in reply to luckyackerl]

Thank you for that name.I have just changed doctors again so will inform them of Dr Grace's presence.I was told that there is now no Haemotologist at the Conquest any more so we all have to go to Eastbourne.

[AdrianUK in reply to maggiewillow]

Also If you are having sinus issues perhaps you should ask for an ENT referral in case there’s anything they can do to help.

[luckyackerl]

That is right, Dr Grace has been mopping up the Conquest patients. I am sure you will be impressed, he is very thorough, diligent and kind.

Good luck

Joyce