CLL---how does it behave?

It’s different for everyone. I’m 78 and was diagnosed with CLL 20 years ago. If you’re not seeing a CLL expert hematologist, find one (society.org has lots of information and lists of experts).

AS minnesotajim says, it’s different for everyone. My 73 year old husband got diagnosed in March which called for immediate treatment (as immediate as the “system” would permit, anyway). He had no symptoms and it was routine bloodwork following a bout with pneumonia in July 2025 that revealed the red flags. Turned out the pneumonia itself (and subsequent illness) were symptoms. Definitely seek a hematologist. Agree cllsociety.org is a great resource.

Current symptoms: tires easily, weight loss, bronchitis that won’t go away.

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?

@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!

@minnesotajim sorry but what is an IVIG infusion?

Read about it here or many other sites: https://www.webmd.com/a-to-z-guides/immunoglobulin-therapy

Thanks for posting information about this treatment. I was in the dark.

@minnesotajim
What level does your IGg need to be before they will Normally give you IVIG? I was diagnosed in two thousand seventeen and am also on zanbrutinib 2 years now I have been afraid to travel and i'm tired of staying home and wearing a mask all the time whenever I go out.

After multiple sinus infections and antibiotics for 8 months, my PCP was concerned about my high white blood cell count. I 'assumed' the high WBC was because of all the infections. He felt it was something more and sent me to a hematologist / oncologist, who determined that I had CLL. After I recovered from the shocking diagnosis, I started to ask questions and do research. As part of my blood work (particularly due to my many sinus infections), my oncologist tested my immune system; she then ordered IVIG treatments (there was no call or message from the office explaining things). Like Dorothea, I was completely in the dark!

I received a text from the hospital, "thanking me" for scheduling IVIG with a date to go to the Infusion Center; according to the message, this was to be a 10-minute visit! That is all I knew! I never heard of IVIG, did not know what it was or what it was for, and had absolutely no idea of what to expect! No explanation was given at all! I thought maybe an injection - then I would have the rest of the day to myself for other things I had planned - NO!!!!

I have now had IVIG infusions every 4 weeks for nearly 2 years. This is what I have learned; I hope it helps, so no one else is as "in the dark" as I was!
1. IVIG is a human blood product. Because of that, side effects are common, so precautions are taken.
2. My infusions are always preceded by IV Benadryl and 3 Tylenol to help prevent side effects (along with saline). There is then a 30-minute waiting period. The Benadryl makes most people sleepy.
3. After the 30-minute waiting period, the IVIG is started (by this time, you have already been there about an hour and a half (they take your weight, ask lots of medical questions, check your vitals, etc.)
4. The IVIG is titrated; this means the dosage is gradually increased by very small amounts. For me the titration period was 30 minutes. So, every 30 minutes, the machine would 'alarm', and the nurse would come to increase the dosage. It took several hours to receive the full amount. At every change of dosage, my vitals were taken again to confirm that I was not experiencing any side effects, like lowered blood pressure.
5. After a few months that I did not experience side effects, the titration period has been decreased to 15 minutes (this shortens the total infusion time to about 4 hours).
6. Other than lots of bruising (I have been told I am a "hard stick", and it often takes several 'tries' to get the needle placed), I have not had any issues with IVIG. I have settled into the process - take a book, snacks, and something to drink.
7. I am extremely grateful for IVIG. I never experienced COVID and have not had a cold, flu, or a sinus infection since this started! Previously, I had almost constant infections. I just spent two weeks with my husband being in the hospital with pneumonia; I was there every day all day - and I did not get sick. I attribute this to the IVIG. As MinnesotaJim said, people with CLL have compromised immune systems.
8. I have one infusion left that is scheduled. When I next see my oncologist, she will determine if I continue the IVIG infusions. Since her office does not notify me, I will wait for the hospital to send a "Thank you for scheduling" message - or not!
9. One more thing.... IVIG is VERY expensive! I am on Medicare and a supplement, and it is covered - as long as my infusions are not more often than prescribed (even a day short). You might want to check with your insurance about your coverage. Good luck!

@califirniagal It appears different providers and different insurers have their own cut-off points. My oncologist/hematologist uses 400, but attributed it to Medicare; I later learned Medicare doesn't have a fixed cut off.