Anyone have chronic lymphocytic leukemia (CLL)?

Hi @ppolockaz, in Dec'23 it was discovered that I had a high WBC (50), which started me on a 5 month journey of tests. I had no pronounced symptoms that I had noticed so it came as a total surprise. The short story is that I ended up being dx'd with CLL (see my other posts for more if you are interested).
For me, treatment amounted to taking a pill twice a day (Zanubrutinib/Brukinsa) and going for periodic visits to Mayo. I didn't get or need any infusions. The transition to this way of life (taking those pills, being more wary of situations that could lead me to getting sick) was mostly not a big event. I feel mostly the same, and do all of the things I did before.
If / when you get to the point of needing any meds, at least in my experience, it didn't turn out to be nearly as bad as a had first imagined it might be.

I’m 74, and was diagnosed with CLL a couple of years ago. I’d had no symptoms except for elevated white blood counts that weren’t caused by an infection. Initially, I saw an oncologist twice a year but currently am scheduled for once a year unless I want to come in sooner. The “watch and wait” plan makes sense to me as I know that treatments, while helpful, have their own side effects.

Hi @akilby Welcome to Connect. Chronic Lymphocytic Leukemia (CLL) is often very slow to develop to the point of requiring any treatment. If you’re currently only having to see your oncologist annually for blood work that’s a pretty good indication that your situation is stable.
You mentioned not really having any symptoms, which is great! So was your diagnosis discovered through blood work with a routine physical?

I have had CLL for several years and my IGG, though it fluctuates, has been creeping lower with each blood panel. It was 450 when my oncologist suggested infusions. It then went back up to 520. I have no other symptoms and do not get chronic infections. I am not keen to begin infusions and my doctor is usually too busy (stands at the door of the exam room with his computer on a table with wheels) to discuss why he is suggesting infusions other than my IGG number. He just says, it's okay if you don't want to do it now - you can wait." Then he's gone.
Wait? Wait for what? Will I definitely require infusions at some point? Anyone have low IGG and no other symptoms?

Good morning, @rimmy2 You’ve done some good homework in reviewing past labs. Being able to notice trends in blood test results can be helpful for doctors to discovery any changes in the body.

Elevated lymphocytes aren’t necessarily a big concern because an up-tick can be caused by things such as a viral infection or chronic inflammation with conditions like autoimmune diseases.
But the fact that you noticed this upward trend in your husband’s blood results over the past 5 years is a good point to bring up with the NP. Blood conditions can be very slow to develop so if she doesn’t feel this is worth noting, if this were me, I’d at least push for some further testing to determine an underlying cause. General practitioners and family health NPs are not always tuned into nuances of blood changes. So if you’re not satisfied, you could go one further and request a consult with a hematologist.
Were there any other trends noticed in his blood work or any changing symptoms over the years?

@loribmt
I reached out previously regarding my husband’s AL rising since 2020

He received his lab work back and this year the AL are 6.7 Last year they were 5.8.

We see the NP on 5/5 (our appointments are together). Can anyone give me some pointers on what we should say to her regarding this? Does having this increase over years primarily point to CLL? Do Primary Care offices run additional tests or do folks proceed immediately to a Hematologist Can allergies contribute to an increase in AL?

I feel like I’ve diagnosed him with this and we are both scared. How is it determined if the increased AL is actually cancer?

Thank you for any information

Good morning, @rimmy2. It’s way too early in the game to jump to conclusions with a diagnosis. But I think your concerns about your husband’s absolute lymphocyte levels increasing are legitimate. Not in the respect that this is something to worry about but that there is an obvious upward trend. The levels are above what’s considered normal and you’d like your NP to follow up. The number itself isn’t necessarily cause for concern. It just suggests that something’s going on to create a higher than normal level of lymphocytes and should be investigated. She shouldn’t be dismissive of your concerns.

The NP may be able to order more tests such as a peripheral blood smear and, if it wasn’t done, a CBC with differential. This measures various components of blood, including lymphocyte levels in relation to other WBC. There’s also flow cytometry which identifies types of cells.

If that’s beyond her capability to order or interpret, then I’d suggest getting a referral to a hematologist or hematologist oncologist. They specialize in blood conditions. A consultation with a specialist, I feel, would go a long way towards giving you reassurance. If this is CLL, that remains one of the most treatable forms of chronic leukemia. Many people can delay treatment for years before it’s required to help with symptoms. But that’s putting the cart way before the horse!
If I may, please stop searching and self diagnosing now. This may be nothing and then you’ve wasted so much time, energy and added to your mental stress. IF something is going on, then you and your husband will deal with it at the time. Until then, get on with life and enjoy the gifts of this new season with all the birds singing, flowers blooming and renewal all around us…every day is a gift. ☺️

I’ll be interested in hearing what your NP says on May 5th. I hope you’ll give me an update. Can I be nosy?