Have had a horrendous cough and feeling unwell for over 2 weeks. I do have asthma but normally not as problematic as it is now Rang 111 initially as it was a Sunday 2 weeks ago they thought it was viral. Went to GP last Wednesday as was worse. Going to try to get an appointment tomorrow as still getting worse despite antibiotics and steroids. Am exhausted and feel unwell. I’m mortified as flying to Dubai on Monday and don’t want holiday ruined. First time I’ve had a infection since Chronic lymphocytic leukaemia (CLL) diagnosis in June . Am I being paranoid or is it a weakened immune system preventing me from recovering as I usually would ?
Hi @KayC, so sorry you’re feeling unwell! Do you mind if I ask if you’ve done covid tests?
We’d really encourage you to get in touch with your haematology team to let them know how you’re feeling as it’s really important they’re aware of this and can offer any support/intervention they feel you may need. As you’ve said, having blood cancer can weaken your immune system and increase your risk of infection, but it can also mean that your immune system struggles to fight off infections as easily. I’ll tag in our @BloodCancerUK_Nurses as one of them may be able to offer a bit more guidance for you. Take care, Alice
Thanks for your response. I’m a nurse so do covid tests all the time so I know it’s not that. The asthma can be problematic as the weather changes but never like this.it just seems to be taking ages to get over whatever it is I’ve got I pretty much slept for 13 hours last night I I’m going to to see how I feel after today. Being new to this I’m just not sure if and when I contact haematology. I’m on a watch and wait so probably due a review around December
Hi @KayC so sorry to hear that you are feeling so rotten.
@Alice_BloodCancerUK has given you great advice.
I also have Chronic lymphocytic leukaemia (CLL) and it is so difficult to answer your question, yes, I find it is more difficult and longer to fight off infections and personally there seems to also be a lot of bugs about suddenly and I feel because I have led an isolated lifestyle for a couple of years that I have not built up any natural immunity.
I would also say to contact someone on your medical team, especially if you have asthma, as they know your whole medical history. Perhaps a CNS (Clinical Nurse Specialist), Consultant or even your own GP. Also do stress the severity of your symptoms, how very unwell you feel and the impact on your life
You still have a few days before Monday.
Please do let us know how you get on, fingers and toes crossed for you and be very kind to yourself.
I hope you don’t mind me stepping in and replying to you.
I’m sorry to read you have been struggling with such a terrible cough and an infection, but pleased to know it’s not Covid. I would have thought that by now the anti-biotics would have helped, even just a little bit. It is difficult to say whether this infection is worse because of your Chronic lymphocytic leukaemia (CLL), it could possibly be the cause of it not improving quite so quickly, it depends on the infection I think.
Even though it is quite late in the afternoon, I would suggest ringing your Haematology team and letting them know that you are unwell, you’ve started anti-biotics but they’ve not helped. They may just want to run some extra blood tests on you and find out if there’s been any changes in your blood counts. It does sound like a Chest X-ray would be useful too, either your GP could request this, or sometimes the specialist nurses can write an x-ray form for you.
Are you on any steroids for your asthma? Does it feel like any asthma episode you’ve had before?
Please do seek help soon if you feel things are getting worse, even if this means going to A&E in the night. Nurses are notoriously bad for asking for help when it comes to their own health and as you say, you want to be feeling better for your trip away to Dubai, so do get in touch with your Haematology team. Contacting them sooner rather than later may also prevent an admission, but they will best advise you depending on your bloods.
Best wishes and I hope you feel better soon.
Thank you so much for your advice. I think I am feeling slightly better today after such a long sleep so will see how I am tonight. I do have nasty asthma episodes from time to time but not as many altogether in such a short period of time. My GP prescribed prednisilone a week ago as he could hear a wheeze on my chest I normally just take preventative and relief inhalers which keep me steady I don’t even know if I have a specialist nurse I was just given a number for haematology if I developed new or worrying symptoms in relation to Chronic lymphocytic leukaemia (CLL) New and confusing territory about when and what to do ! Hoping the warm weather will help !
@KayC glad you are feeling slightly better but that also means to me that you have a way to go with your recovery.
It is great that you have a number for your Haematology Dept, a good contact, that is what they are there for.
Look after yourself and don’t overdo it.
Thank you Erica I will take my time next few days x
My partner was diagnosed with early Chronic lymphocytic leukaemia (CLL) in June too,he has had 3or 4 low grade infections since. We are luckily currently enjoying the last few days of our holiday in Dominican Republic but even here he has now got a viral type infection. He is due follow up in a few week’s. He was never ill before this except in the 9months pre diagnosis. Fatigue is the other issue. I hope you manage to get away okand maybe do what we have done,which is to get standby antibiotics to bring away in case you struggle. Take care
Thanks it’s really helpful to hear about someone else in exactly the same situation as myself. Hope you have had an amazing holiday x
Hi I to have Chronic lymphocytic leukaemia (CLL) and I was advised as I presume everyone one is is to take Zinc at 30 mg a day and increase the vitamin C to 1000/1500 mg per day, basically look at everything to improve your immunity. Good food, good sleep and exercise within you limits. I hope you feel better soon and enjoy your holiday.
I have read that increasing vitamin c can be helpful but no one has officially given me advice about vit c or zinc so this is really helpful thanks. I will certainly take that on board. Crazy why we aren’t all given this information
Hoping that you continue to feel better?
Although we recommend a healthy, balanced diet there is no clinical guidelines regarding dosages of vitamin c and zinc, this is most likely as it has not been tested through clinical trials. If you are taking extra doses of vitamins please let your Haematology team know as there can be side effects and drug interactions that they would want to avoid for you.
Do rest up and hope you are fully recovered very soon.
Thanks Gemma. Understood
Thanks for the useful info. We had a lovely holiday, OH felt unwell for a few days whilst away and has now got a sore foot with a lump so we think he must have knocked it whilst away. He had his bloods done on Wednesday and true to form he nearly passed out again. He has also had another episode of bleeding from his oesophagitis so will have to discuss what has been going on with the consultant and also ask about vitamins etc.
Hi @Jujuju99 I am so glad that you had a lovely holiday.
Please let us know how you both get on with the consultant and make sure you ask everything you both want to.
Look after yourselves
Hi @Jujuju99 I have been thinking about you both and I just wondered how you both were?
Look after yourselves
We are ok thank you for asking. We had a lovely break and my OH is talking more about his diagnosis with friends now. He has yet more infections and bizarrely his skin is peeling on his hand. He has had some prolonged bleeding from cuts and other weird things but he had bloods done 10 days ago and we see the consultant on Tuesday. At this appointment we get results of the mutation blood tests. Will let you know how we get on.
Hi @Jujuju99 a lovely break seems just what you both needed.
Encourage your OH to keep a diary of what has and is happening to him medically to talk over with is consultant and ensure he stresses the severity and effect on his life however weird they are.
Yes, please do let us know what his consultant says on Tuesday and look after yourselves.
Hi @Jujuju99 how did you both get on with the consultant?
Look after yourself