Hi....newly diagnosed with no symptoms, and on watch and wait. Normally I shake off colds really quickly without major symptoms but this time I have swollen neck glands which are painful, especially when I swallow and it is worse at night. Other symptoms are very mild as usual and I don't have a fever.
Rest of the family have classic colds/man-flu with blocked noses and much coughing.
I'm going to give it a few more days (this is day 6)and then call the GP for advice, but has anyone else had this when they've had a cold?
I am hoping it's just a coincidence and not caused by my CLL .......
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EvilEdna71
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Hi, sorry to hear that. I would call your GP. Painful lymph nodes are usually nothing to do with your CLL. I got a lymph node infection once (lymphadenitis) and it was from an infected skin cut. It needed antibiotics. I didn't have a temperature either but it was very painful.
If you usually don't get these symptoms, it is better to have it checked by a professional.
It could be also tonsillitis and that would need antibiotics too.
Definitely have it checked if you are worried. Hope you get better soon.
I agree with Poodle2 You should have a low threshold to see your GP. Given you are new to CLL, that too should urge you to check if you have an infection that needs treating.
Many infections start as a viral cause, essentially no treatment (unless Covid...)but bacterial infection can follow on, and that can be, and needs to be treated.
If your GP is uncertain, there are blood tests that can measure infection severity.
As CLL sufferers we need to be savvy about infection. Know when to take own temperature for example. Know how to prevent infections from scrapes and cuts etc.
Much written in the pinned posts on this Forum.
Jig
PS If you lock your post to Forum members only, you will get better and more responses.
Forgive me if I'm telling you what you already know, but Covid symptoms are often the same as cold/flu, so you should be testing daily until you get a positive test, or for the first 5 days. (In the UK, you are entitled to free tests from pharmacies who participate with the govt scheme. Most do. You may need to provide documentary evidence, but I didn't have to.)
As a CLL patient, you are in the highest Covid risk group, and eligible for emergency treatment, but you're supposed to get it within 5 days of first symptoms.
DO NOT just leave it for a few more days, and if you can't speak to your GP TODAY, call 111.
Covid is not spoken of much on the media, but is still very much with us, and people like us are dying in disproportionate numbers.
For future reference, the long term effects of Covid are cumulative, so you need to try your best to avoid getting multiple infections. The best tool at our immediate disposal is wearing a well-fitted FFP2 or FFP3 mask.
Surgical masks protect others, they don't protect you. When you are with a medical professional, including doctors, consultants, nurses, technicians, let them know you have CLL, and ask them to put on a mask, too, unless they're already wearing one. Unfortunately, very rare. We shouldn't have to ask, but it's worth the compromise. I have never been refused.
Again.. apologies if you already know all this, but I'd rather repeat it than not.
Whatever your lurgy is, I hope you get the attention you need, and get better soon. Don't undersell yourself. With a name like EvilEdna, I suspect that lack of assertiveness is not your problem!
I am 18 years on watch and wait, so for me my CLL is more of an immune system problem ... I catch infections more easily and they take longer to 'shift'
I tend to use a Pharmacists as a first contact but my motto now is - If there is any doubt then there is no doubt - call the GP.
If it was my family who had classic colds/man-flu with blocked noses and much coughing ... then it would be certain that I would catch it too ...
My immune system is as useless as the 'shields' on Star Trek spaceships ... if someone sneezes a voice in my head shouts " shields down by 70% !!!"
Update....he thinks only a small chance this is strep, but has given me a 'delayed prescription' that I can take to the pharmacy if it gets worse. It's been less painful today so I'm going to see how I feel overnight and tomorrow morning.
Hello Evil Edna, I used to brush off colds, etc., and not think twice. I worked in public schools for 35 years which are breeding grounds for germs. I didn't even bother to get flu shots and I rarely went to the GP for treatment of anything I did get (except UTIs).
I've recently consulted with an immunologist, responding to having had covid twice in the last year -- each time I took Paxlovid that worked to reduce symptoms, followed by a nasty infection (first was sinus infection, second time was a respiratory infection). Soon after, I got a urinary infection (which I had not had in decades) followed quickly by a yeast infection.
He noted that I ought to be quicker to respond to infections than I used to be, and not avoidant of treatment. He noted that one does not want an infection to build up and get too strong, and that they're easier to treat if caught early. Realistically, the CLL has stolen some of my body's immune reaction, though some is still functioning OK after diagnosis 7 years ago (still W&W). He urged me to keep close contact with my GP and not to hesitate to get medical advice if I start to be sick. Just one person's experience here, but I trust the immunologist.
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