CLL question

I was recently diagnosed with CLL. I am 59 living in USA. It is at stage 0. Last night I had to take my Mom to aft hour clinic then emergency room because of severe diahrrea. Today I am dizzy, nauseous. Should I already be concerned about being around sick people or am I just being paranoid? Not sure about immune system. Is it already being affected? Thanks in advance!

17 Replies

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  • Hi Lgotro,

    I think my answer would have to be that it's impossible to know whether you've caught anything from your mum or bugs in the hospital but with any stage of CLL there is some degree of immune compromisation. I have no idea what kind of levels you have, whether there's any degree of neutropenia or reduced immunoglobulins but at Stage 0, it's very early days and theoretically there wouldn't yet be a high expectation of compromisation.

    Within my first two years of diagnosis, I spent several nights in A&E with my mum and I too worried about this risk. Thankfully I didn't pick up anything nasty but was careful to constantly wash my hands. What I did feel was rung out with the physical and emotional stress of it though so feelings of dizziness and nausea could be caused by stress.

    I hope your mum is ok now and obviously if she had something contagious like gastro-enteritis, there is a possibly you've picked it up. Watch for any further symptoms because even without CLL, we are a risk of picking up infections and viruses.

    Consult your doctor if you're worried, particularly if you too develop diahorrea, have stomach pains or spike a temperature.

    Hope all is well with both you and your mum.

    Newdawn

  • Even at stage 0, CLL begins to affect your immune system and you should consider yourself immune compromised and get your non-live vaccinations up to date before your CLL begins to impact their effectiveness. That said, gastrointestinal infections can be highly contagious and you could well have caught an infection from your emergency room trip irrespective of your CLL's impact on your immune system.

    Ask your doctor or specialist if your neutrophils and immunoglobulins are within the normal range. If they are low, you are likely to be more susceptible to infections. The best way to work out your level of susceptibility is to keep a health diary and record when you do have infections and how long it takes you to get over them.

    There are quite a few posts on how to avoid infections on this site and you can do much without becoming 'paranoid'. Despite being taught by our parents and school teachers basic hygiene principles, people seem to forget how important it is to just wash their hands before touching their lips, nose or eyes. It's frightening to learn how many people (particularly men) don't even bother to wash their hands after going to the toilet - and with public toilet doors nearly always designed so that you have to grasp a handle to get out along with handshakes being the standard way of greeting people, it's amazing how healthy most of the population is!

    Neil

  • I have no idea about neutrophils immunoglobulins,... Am in finding it all out I ordered several books today. Thanks

  • Good on you!

    You can read about the purpose of your different blood cells and their normal ranges here:

    cllsupport.org.uk/cll-sll/s...

  • Thank you, Neil, for being the voice of reason. You've definitely helped me to keep calm!

    Ten0513

  • Ahh Poppa Neil...we get nervous and even paranoid but you're always here to calm our fears..

    Thank you...we love you Poppa Neil....Cat

  • This is so true! Thanks a bunch for that!

    Sue

  • It all sounds very complex initially so don't worry about understanding all aspects at this stage Lgotro.

    I find this fairly concise article useful for covering the basics;

    health.usnews.com/health-co...

    Newdawn

  • Excellent link Newdawn,thank you...Cat

  • It is very easy to think that everything we experience after a CLL diagnosis must be related to our CLL. I think we all experience a bit of paranoia. I now check with my primary sooner if I have any kind of unusual symptom. Fortunately she has a few patients with CLL and has done her homework about basic CLL issues. She also knows that I have made a point of educating myself and that I don't call unless I have reason to believe that I need to be seen for something or to start on medication (eg possible shingles or an infection starting - I'm very immune compromised). CLL has not exempted me from having other medical issues, so I try to separate what really needs the attention of my hematologist from what I should channel to or through my primary.

    I hope you are feeling better. There are several of us on this site in the US, so if you give your general location others can perhaps help you find a specialist reasonably near you if you have not done that yet.

    Pat

  • Your not being paranoid. Anyone that's goes to the ER should take precautions. Those with CLL any stage you want to try to stay away from potential threats. I try to stay away from ER especially DURING FLU SEASON! It's hard to know how your CLL is effecting your immune system if you have not had testing.

    Best of luck to you and your Mom!

    Lisa Minkove

    CLL DX 2010 currently in clinical trial Acalabruitinib. 13q unmutated

  • I was diagnosed over three years ago with CLL. I have had the pneumonia vaccination, but refuse to have the annual flu vaccine as I continue to have an amazing immune system (thanks to my mother for choosing to breastfeed me back in 1955, along with other things I do to boost it). I was at first paranoid that every little thing was part of the CLL, but my doctor and I have an amazing partnership in my health. I educate myself and she listens to me. She and I are on the same page (although she did badger me into the pneumonia shot :-).

    Overall, I must say that other than needing more sleep, I am feeling fabulous (for someone who's 61, holds public office, runs her own business that employs 12 people, volunteers in the community, etc. etc.) I take probiotics and rarely have gastrointestinal issues. I eat carefully (mostly organic, very little meat) and take B complex, Vit D, and other vitamins.

    My mother (who will be 81 this year, and took me to Cuba last year for my 60th birthday) is amazed at how strong and healthy I am, and how busy I am without really missing a step.

    The CLL in my life is nothing more than a minor inconvenience which my doc and I stay on top of very well. The first year and a half were very difficult, but it was because of a depression that smacked me right in the face. I did a lot of positive self-talk and mentally am at the top of my game, no depression, and, in fact, a renewed zest for life.

    I call it "my little blood disorder" whenever someone asks me about it. It doesn't own me.

    Best of luck to you. Chin up!

  • Can I ask.. What stage are you at and it sounds like you take care of yourself. Do you have any symptoms like discomfort with nodes.. ect..

    Best Wishes

    BC

  • Thank you SO much😀 I needed to hear this while in the "why me" stage!!

  • I am at Stage 0 Watch & Wait diagnosed almost 5 years ago. My initial fish studies predicted that my CLL would probably advance faster than usual. My white counts have increased from 25 at diagnosis to 270 presently. My oncologist assures me that I am not ready for treatment as there are many indicators of when treatment is advisable. Last month I hade a consult with a CLL specialist at Univ of PA Hospital who concurred. That's just for background.

    One of the most difficult things for me to deal with is not knowing what may or may not be a symptom/result of my condition. I an tired frequently; is that because of the CLL or my age and physical activity (or maybe a combo of both. The only answer, I think, is when you are concerned, ask your oncoligist; don't be afraid of bothering him/her or asking silly questions.

  • Hi Lgotro. At my first haematology appointment I discussed risk of infection with my consultant. She said to be vigilant but not neurotic. Easier said than done, particularly in the early days! 😀 Initially, I blamed all my aches and pains on the CLL. Now I try to remember that we all catch bugs from time to time, whether we are immune compromised or not. I am definitely more aware than I was and carry a small pack of wipes with me most of the time. I have spent many long hours in hospital with my mum during the last few months so try not to worry too much. Peggy

  • Your Doctor can do a blood test to see how good your immune system is.

    If it is low, they can give you something to boost it.

    I would try to avoid sick people.

    Soon after my Mum was diagnosed she caught a cold and didn't get rid of it for 3 months.

    Mum was given 'Privigen' once a month to boost her immunity, it is very expensive though.

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