Is this routine or related to my SLL/CLL?

[Reetywell71]

Hi ALL. Diagnosed in 6/24. I seem to have had several maladies pop up since being diagnosed. I’ve had a toenail infection, a urinary tract infection both successfully treated with antibiotics. I sprained my ankle recently and I am down with I hope is just a common cold. No fever and Covid negative. Coughing up some mucus in the morning after sleeping. I suffer from health anxiety and it doesn’t help that I am a retired nurse. When I thought I was getting sick for the first time I woke up to a full blown panic attack. My husband keeps telling me this is normal stuff but I can’t help relating it to my my CLL. Would someone tell me I’m not crazy! When I’m not obsessing about my body I’ve felt pretty good physically, still have energy to do what I normally do. How do I differentiate between the normal and my chronic condition? I’m also 71 and have been in good health up to now. I want to see if my damaged immune system can fight this off by itself. By the way I am taking a half dose of brukinsa and recent ct scan in November showed resolution of nodes in the chest with normal labs. So somebody please tell me if I am over worrying or just need more time to accept and adjust.

[BigfootT]

Reetywell71, Just curious. In your Bio you say you where diagnosed in July and were put on Zanu after a CT showed enlarged nodes. May I ask how enlarged? I was diagnosed in Feb '24 and have had 2 CTs and 2 PETs that show "multiple" an "innumerable" enlarged nodes from head to pelvis. My largest is 5cm x 6cm and my doctor hasn't moved toward treatment....YET, but as we know things can change... particularly when you're unmutated IGHV like I am. Anyway, it just sounds like you started treatment quite quickly after diagnosis and I'm curious what was the driver.

Thanks, Bigfoot

[Spark_Plug]

Not being a doctor I can't say yes or no, obviously. Yet, CLL being a cancer producing ineffective WBC's would indicate that all of us are declining in immune abilities. Each of us is at differing levels, so your specific openness to infection is going to be different. So, it isn't unreasonable.

Having said that, you do mention a tendency toward anxiety. So, I wouldn't feel bad in checking each infection out with your doctor as you know how fast sepsis can overtake someone. But, try to believe your doctor after they've talked with you, it is a tough balancing act. 🙂💐

[Baz209]

I can assure you your husband is right about normal stuff like sprained ankles, colds, etc.. the worst thing you can do is start over analysing things. I said to my cll doctor once as I was over analysing if something I had was related to cll, to which he said no.

Edit: my mum had a compromised immune system, and she did get UTIs because of it. This is where you need to try preventive measures, go toilet, hygiene, and so on. Symptoms start, doctors straight away.

[Bubnojay]

Your post prompts me to add a caution for you and all cll'ers regarding Urinary Tract Infections (UTI's). I had Cll for 12 years considered stable and unlikely to need treatment. I ended up in hospital knocking on the grim reapers door. Spent the first day unconscious with a UTI I was later told, was one that had left my survival questionable. The point of this post is that I never get any symptoms only very tired and weak, I had phoned my surgery and was told to take two paracetamol and go to bed.

I was fortunate that a video call with my sister alerted her to the fact I was disorientated and she alerted my daughter who drove 4 hours to get to me. Only due to her intervention did the GP come out and less than an hour later I was unconscious in an emergency room. The point of this post is I had none of the symptoms associated with a UTI that I recognised.

Now I am aware that smell and clarity of urine are Key indicators, so if in doubt take a test. Better to raise a false alarm than die.

[CLLquilt in reply to Bubnojay]

I am so glad you had the support you had! I had a scare that everyone I talked to/saw in the office thought was heartburn. I had a CT that they said came through fine and said I could go home. I walked myself over to the ER and wouldn’t go home until I saw a doctor. Turned out I had an allergic reaction to medication and needed a transfusion. I was fortunate that I was already at the hospital for the CT.

Unfortunately we need to rely on others for our health and safety - but I found I need to be more vocal when I am sick because I know my body and know when it’s not working properly.

[Reetywell71 in reply to Bubnojay]

Thanks. I had symptoms 😘

[PoisonDwarf]

Hi Reetywell71,

Welcome to the club no one wants to join. There are many on this forum who are very knowledgeable about this disease & we are all familiar with the roller coaster ride that this diagnosis can bring, especially when it's new, so there's a lot of support & reassurance too. HU really can be a sanity saver at times! We are all unique & this disease is heterogenous, so our journeys can be very different but I hope you will quickly see that you are not alone.

I am not a doctor or medically trained and this is simply my personal opinion. For what it's worth, I do not believe you are 'crazy'. The fact that you are questioning is a good sign of self awareness. I have questioned myself many times; only yesterday after gastroscopy & colonoscopy, a gastroenterologist used the words "abnormally normal in your circumstances". A well prepared bowel meant I could genuinely say: No shit Sherlock. *please insert apology if needed*

I think of CLL/SLL as a cancer of the immune system, which science/medicine doesn't yet fully understand. In your situation always being reasonably healthy and a nurse to boot, CLL can be confounding & anxiety inducing because of the unknowns. Be kind & gentle with yourself.

Ration & emotion can be uncomfortable bedfellows. Time, acceptance & adjustment will make a big difference. Personally, educating myself helped significantly with scan anxiety, and therapy made a huge difference with any control issues. You will find what works for you.

The only thing I can add is, no one knows your body as intimately as you do so if it persistently tells you something is wrong, trust your instincts and don't be shy about self advocacy to find out if there is really something to be concerned about. Sadly your immune system is compromised & somethings it will shrug off, others it won't.

Take care.

Lynn

[Reetywell71 in reply to PoisonDwarf]

Thank you Lynn😍

[PoisonDwarf in reply to Reetywell71]

I just hope it helped! 😘