I was diagnosed with cll ten years ago-stage 0 and that was the norm for 9 years. In the last year I've been hospitalized 3 times for various dire infections but really fine in between. My hematologist started me on IGG infusions almost a year ago and that's helped keep me out of the hospital. But I'm confused by what my doc tells me--that my cll isn't causing all this? Now I'm tired a lot--def. not my norm! Seems like what I'm hearing here indicates it is cll causing this.
Anyway, it's very good to see all these posts and not feel so alone--thank you all!
@embee85, that sounds like a tough year. If the doctor (hematologist?) doesn't think your issues of the past 12 months are not related to CLL, have they been able to determine the cause?
@embee85, that sounds like a tough year. If the doctor (hematologist?) doesn't think your issues of the past 12 months are not related to CLL, have they been able to determine the cause?
@colleenyoung in part there's an issue of antibiotic resistant E.coli that keeps popping up but increasingly, that sounds like it, too is tied to CLL Thanks for your response
I was diagnosed with cll ten years ago-stage 0 and that was the norm for 9 years. In the last year I've been hospitalized 3 times for various dire infections but really fine in between. My hematologist started me on IGG infusions almost a year ago and that's helped keep me out of the hospital. But I'm confused by what my doc tells me--that my cll isn't causing all this? Now I'm tired a lot--def. not my norm! Seems like what I'm hearing here indicates it is cll causing this.
Anyway, it's very good to see all these posts and not feel so alone--thank you all!
@embee85 I think that is just a mantra that docs use because they do not want to treat for various good reasons. But to me it is kind of an insult to our intelligence. Just give it to me straight. My goodness, it stands to reason that wonky white blood cells can cause infections to occur more often. However, that statement is so widespread among physicians that, if you are happy with your doctor in general, changing will not be helpful. And the fact that he gives you infusions tells me he is on the right track. Perhaps he just does not want you to think it is directly from CLL and become worried.
@embee85 I think that is just a mantra that docs use because they do not want to treat for various good reasons. But to me it is kind of an insult to our intelligence. Just give it to me straight. My goodness, it stands to reason that wonky white blood cells can cause infections to occur more often. However, that statement is so widespread among physicians that, if you are happy with your doctor in general, changing will not be helpful. And the fact that he gives you infusions tells me he is on the right track. Perhaps he just does not want you to think it is directly from CLL and become worried.
@joycelen thanks—this makes sense. Personally, I tend to imagine worse things than might really be and I need to trust what they tell me. Like you, I just want it straight
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@embee85, that sounds like a tough year. If the doctor (hematologist?) doesn't think your issues of the past 12 months are not related to CLL, have they been able to determine the cause?
@colleenyoung in part there's an issue of antibiotic resistant E.coli that keeps popping up but increasingly, that sounds like it, too is tied to CLL Thanks for your response
@embee85 I think that is just a mantra that docs use because they do not want to treat for various good reasons. But to me it is kind of an insult to our intelligence. Just give it to me straight. My goodness, it stands to reason that wonky white blood cells can cause infections to occur more often. However, that statement is so widespread among physicians that, if you are happy with your doctor in general, changing will not be helpful. And the fact that he gives you infusions tells me he is on the right track. Perhaps he just does not want you to think it is directly from CLL and become worried.
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1 Reaction@joycelen thanks—this makes sense. Personally, I tend to imagine worse things than might really be and I need to trust what they tell me. Like you, I just want it straight
Yes but am still on the wait and see