Hello,
I am newly diagnosed with Chronic lymphocytic leukaemia (CLL). I am having a lot of issues with my breathing, what can help with this?
I’m currently on watch and wait.
Thank you.
1 Like
Dear @AnnR23
I am so sorry to hear that your breathing is difficult. I would urge you to speak to your Haematology team or your GP as soon as possible. Difficulties in breathing can be due to many factors but it is not something you should tolerate as is exhausting. May I ask when you last had a blood test taken or saw a Doctor?
Do call us this morning from 10am if you would like to talk this through? Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
4 Likes
I am really glad that you have found us @AnnR23 so quickly, I also have Chronic lymphocytic leukaemia (CLL) and I have been on ‘watch and wait’ or ‘active monitoring’ for 19 yrs.
I remember that I had absolutely no energy or deep breathing capability after diagnosis and actually now I had a non Covid cold/flu bug at Christmas and it has done my energy and being able to deep breathe and I am also a bit wheezy.
My experience might not help at all.
Perhaps your question is best for your GP, consultant or CNS (clinical nurse specialist). It might always be an infection which is best caught early.
I have to write everything I want to say before hand and stress each symptom, the severity and impact on my life.
If you have any other questions, I am always willing to share my experiences but I also believe in checking everything out with my medical team so they are aware of what is going on for me.
I have found fresh air and gentle exercise is good for me and small steps to increasing my exercise when I feel up to it.
Look after yourself.
4 Likes
Hi Erica
I too, like you, have suffering breathing problems since getting a bug just before Christmas. Also my feet and ankles keep swelling up which hasn’t happened before. Consultant said my blood results are excellent but I still feel awful, I am constantly wheezing and breathless and oh so tired. Saw GP yesterday after INR nurse was concerned. Another course of steroids and inhaler. Beginning to wonder if I shall be like this forever
However had a lovely Mother’s Day lunch with family and gifts of a magnolia bush and a geum called Mai Tai cocktail. Pity there wasn’t an actual cocktail with it! Look forward to seeing them in bloom… at present I am eating a lovely chocolate and nut torte made by my granddaughters boyfriend for my husbands birthday, yummee medicine I can recommend a daily dose. Marylin xx
5 Likes
Hi @Marylin you see I thought I was the only one with the ongoing breathing problems.
I also had a lovely Mothers Day and we went to my son’s home for the first time since before Covid. My son got me some lovely choccies (he knows me) and we had lemon drizzle cake, which was scrummy. My hubby also got me the same choccies, this happens co-incidentally every year as it it always the ones that are on offer at our local supermarket!!
Ooohhh chocolate and nut torte sounds good to me.
Please let us know how your bushes look in bloom, I especially love magnolias.
Also please let us know now the steroids and inhaler go
Look after and be kind to yourself
1 Like
Hello,
Thank you I will contact my GP. I had my bloods done 2/3 weeks ago now that’s when I was diagnosed with Chronic lymphocytic leukaemia (CLL).
You mentioned giving you a call what’s the contact information.
Thank you
3 Likes
Hello Erica,
Thank you for taking the time to respond to my post. I will speak to my GP about my breathing issues as it’s not getting any easier. I’m really starting to worry although I had this symptom when they placed me on watch and worry.
I look forward to chatting
Thanks
Ann
2 Likes
Hello @AnnR23. The Blood Cancer UK support line number is 0808 208 0888. They open at 10.00 am. Warm wishes Willow X
3 Likes
Hi @AnnR23 I notice you call it ‘watch and worry’ and so many people do, but I prefer to call it ‘watch and wait’ or ‘active monitoring’ as it reframes it more positively in my mind, even though after 19 yrs I still get worried and anxious before all medical tests, results and appointments. This might not help you, but it does me.
Yes please do keep chatting we are all here to support each other.
We await hearing how you get on, look after yourself
3 Likes
Hi all, I have found that the Haematologists are only interested in my blood and it’s test results. The rest of my ailments such as breathing problems, swollen feet, ankles and knees, skin rashes, night sweats, mind numbing fatigue are the province of my GP.
The lastGP I saw said he didn’t consider Polycythemia a cancer, I didn’t have the energy to argue with him. But did go on the internet to reassure myself, where it states world wide that it is a rare blood cancer. Which is why I take Hydroxycarbamide daily. Such is the life of a Polycythaemia vera (PV) sufferer. No wonder anxiety is my constant companion. Marylin
1 Like
Quite honestly, I don’t think the health issues you are experiencing are highly unlikely to be linked to your Chronic lymphocytic leukaemia (CLL), which is why your haematology consultant most likely cannot help. You need to see your GP and press for other tests. I have had Chronic lymphocytic leukaemia (CLL) for over 9 years and it’s easy to put all physical symptoms down to it, but as I have found out myself, there’s every chance that you have an unrelated illness which needs to be the concern of your GP, not Chronic lymphocytic leukaemia (CLL) consultant. I hope that you get an appointment soon, because if your blood tests are ‘excellent’, as your consultant says, then something else is going on.
2 Likes
I have noticed my breathing isn’t as good as it was and I wonder if it’s related to wearing a mask as much as I do. When I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018 my breathing wasn’t good and my consultant thought it could be linked to anemia, I started using zn iton tonic called Spatone which recommended by the pharmacist and approved by my consultant. I think this helped and stayed good since. I began treatment with Acalabrutinib in 2021 and my bloods are good. I shall have more blood tests next week and a consultant appointment the week after. I shall try and remember to mention my breathing to her.
I would also say any problems or concerns do ask your team.
1 Like
Hi
My breathing has deteriorated, I am surrounded by inhalers and a clear plastic large thingy. I have found I am allergic to steroids, inhaling them makes me break out in a sweat and my joints swell up and I feel as if my muscles are tight and pulling in the wrong direction. They make me feel rather unwell. Not mention very low in spirits. A major disaster occurred my riser recliner motor ceased to work. It has done four years Stirling work and was my cosy comfortable haven in my pain filled life. The local mobility shop luckily had one with the necessary back independent motor. It was in place by mid afternoon and I am At ease in it as I write, though rather poorer tan I would have liked. Apologies for my moan, I seem to be a heap of self pity. A happy Easter to all. Marylin
2 Likes
@Marylin I did not think that you were having a moan, it was just as it is.
I think struggling to breathe is very wearing, debilitating and very scary
The final straw must have been your riser recliner and you were lucky with your local mobility shop stepping into the breach.
I hope that you find posting on here therapeutic, I find that just externalising it helps me not bottle it up.
I wish you a very happy Easter and be kind to yourself @Marylin x.
Hi
Had a very nice Easter, lovely roast lamb lunch at my daughters. A pootle along the cliffs at Tintagel on my mobility scooter with gran daughter and boyfriend and dog Pip.
Have you heard of a book called ‘ The boy, the olé, the fox and the horse? The author Charlie Mackesy says it is a book for ages 8 - 80 yrs. I just squeak in. It is beautifully bound with quality paper. £9.00 from Amazon. Reading it is like having a huge hug although it is very short. Worth every penny. Do try it, it lessened my anxiety. Marylin
1 Like
I fully endorse your recommendation of Charlie Mackesy’s book @Marylin. There is also an animated version shown on the BBC over Easter (and last Christmas) with the same title. I agree with you, the words and drawings are beautiful and very meaningful. So pleased you had a good time with your relatives. Warm wishes, Willow X
1 Like
Isn’t the book wonderful? I bought a copy for my friend in her last months and she told me it gave her some of the words she needed. And it was so precious to her that it went with her on her last journey.
I don’t tell this to make anyone sad, i tell it so that others might take a look at it and get a laugh, a comfort, some solace or just a little while marvelling at the drawings and the words. My beautiful teenage son bought me another version of it for Christmas, this one is Scots. I treasure it.
Every good wish to you all
1 Like
Hi
I am still having breathing problems exacerbated by Nitrofurantoin antibiotics causing a severe allergic reaction. They caused the nerves in my arms and hands to constantly ripple with pain, an excruciating headache and severe nausea, plus a complete loss of control of my waterworks, a call to 111 resulted in nurse telling me to go to hospital. I refused to go, the thoughts of spending hours and hours in an and e were too much to contemplate. After 12 hours the symptoms abated, they were slow release capsules unfortunately. A phone call to my medical centre resulted in different antibiotics but I didn’t take them until the following morning in case of a bad reaction with no local help available. Have to add the Nitrofurantoin to steroids which also caused a bad reaction. Is it because of the. Hydroxycarbamide and other drugs I am prescribed? The Polycythaemia vera (PV) has taken control of my body it seems. Marylin
1 Like
Hi @Marylin, thank you for the post. I’m so sorry to hear that you continue to experience breathing problems. It sounds as though you’ve been feeling so unwell with this all. Please know our Support Team are here for you if you’d like to talk anything over with us (0808 2080 888 or support@bloodcancer.org.uk).
Although medications can interact with one another, we’re all individual in how we respond. I was just wondering if your medical centre offered any other suggestions? Would it be possible getting a face-to-face appointment with them to talk this through? The doctor might be able to seek specialist advice for you, such as from a microbiologist or allergy specialist.
I also wonder whether a pharmacist might be able to offer some guidance around the medications you’re on and any possible interactions?
Take good care, Marylin, and do keep reaching out for help and support.
Best wishes,
Tanya.
1 Like
Oh @Marylin what you have been going through sounds so scary and horrible, I am so sorry.
@TanyaBloodCancerUK has given you a good response, the questions you ask are really medical ones for your medical team.
Let us know how you get on.
Take care and be very kind to yourself.