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CLL---how does it behave?

Blood Cancers & Disorders | Last Active: 2 hours ago | Replies (7)

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Me, again. And thanks to both of you for your responses. I do have a highly qualified oncologist/hematologist at the large teaching hospital here, whose staff I see every four to six months or so; they're the ones monitoring my need for Ivig infusions. She has said that since my disease was discovered at a very early stage, it does not warrant treatment and that things might stay this way for quite a long time. I've been told what to watch for (night sweats, pronounced fatigue, etc). But I'm still curious about what others have experienced, particularly those who've gone for years without actively treating the disease. Does it flare up? Is there pain? Is my current, mild head cold a harbinger of things to come? The answer may well be "It depends!" But I'm trying to get a handle on how worried I should be. How big a deal is this?

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Replies to "Me, again. And thanks to both of you for your responses. I do have a highly..."

@annedallas Everyone with CLL has a compromised immune system, so infections (like colds, sinus infections, etc.) are common. If the IG(g) level falls a lot and you’re getting infections, you might be helped by IVIG infusions)I get them quarterly). As noted earlier, everyone is different. If symptoms appear, you’ll know it—and consult your medical team. Just live your life and try not to worry too much about it. I’m 20 years in, travel internationally extensively (typing this in China), and have been taking ZANUBRUTINIB for nine years. It doesn’t have to change your life!