Anyone have chronic lymphocytic leukemia (CLL)?

نعم أنا

Good morning, @rimmy2 I’d take this as a positive sign that an MD snagged your husband’s case ahead of time. This doctor sounds very proactive and wants your husband evaluated by an hematologist oncologist without you having to jump through hoops to get an appointment with the NP.

After this MD saw the blood results and noticed the same upward trend in absolute lymphocytes that you did, it was a no brainer to have the referral. Again, it doesn’t mean anything alarming. Just that doctors look for trends and there is one pesky result that is slowly creeping upward.

Not knowing anything about where you live or the clinical setting, I don’t know how your husband’s first appointment will go regarding blood work and such. From my personal experience my hematologist oncologist office is connected to a hospital. Blood work is drawn there and all the results are usually available within a half hour. So basically, I have labs drawn and a consult within the hour with my doctor.
I’m not sure if that will be your husband’s experience. But the first meeting will be a good start for him. Again, as I mentioned before, if this is CLL, it is one of the more commonly, successfully treated diseases and most people have long, healthy lives. Many people who are diagnosied only find out through blood work such as your husband’s because there aren’t always obvious symptoms. They can have developed CLL years before and aren’t even aware.
When symptoms become more pronounced, such as night sweats, low grade fevers, unexpected weight loss, fatigue, drastic changes in blood work their doctors may suggest that it’s time for treatment.
My younger neighbor (now in his 40s) developed CLL about 15 years ago and began treatment about 5 years ago. He has a wife, 4 kids and is outside doing yard work, playing football, jogging, bikes, etc. His life hasn’t changed except for a daily pill and occasional blood tests. He and I chat sometimes because I had AML, which is really aggressive and a bone marrow transplant coming up on 7 years ago the end of June. I’m 72 now, super active and really feel most days like I’m still in my 20s. (Hah, my brain included). Anyway, what I’m trying to get across, is that news like this doesn’t have to lead to the worst case scenario.

Mayo’s website on CLL has some good questions as prompts to ask the doctor: For chronic lymphocytic leukemia, some basic questions include:

Do I have chronic lymphocytic leukemia?
What is the stage of my chronic lymphocytic leukemia?
Will I need more tests?
What are the treatment options?
How much does each treatment prolong my life or increase my chances of a cure?
What are the potential side effects of each treatment?
How will each treatment affect my daily life?
What treatment options have shown the best results?
What would you recommend to a friend or family member in my situation?

The doctor will also as your husband if he has any symptoms, such as the ones I noted about about night sweats, fatigue, swollen lymph nodes, unexpected weight loss, that type of thing. Just relax, bring your list of questions and don’t hesitate to get clarity on things the doctor talks about. Both of you can go to the consultation appointment. In fact, most doctors appreciate the extra set of ears. Often when we patients are listening, the conversation moves from one thing to the next so quickly that we forget some of the comments. So it can be helpful for the spouse to jot down notes. My husband did that for me. Then we had key notes to discuss later.

Ok, take a deep breath and exhale slowly! Cuz I know you’re holding yours! Right? Been there, done that (and I still wear the shirt! LOL ). 😅Let me know how the appointments turn out, ok?

@philipschuyler My husband has atypical CLL - his labs were different from typical CLL (for one thing, his WBC count was low, as opposed to elevated), so I m not sure what I have to say is actually applicable, but my husband had no symptoms either, except he got pneumonia (which turned out to be a symptom) and blood tests at that time waved red flags which continued through more extensive blood tests. For us the bone marrow biopsy identified a chromosomal abnormality indicating CLL, so I don’t think the procedure is overkill. Many people get a “wait and see” diagnosis and stay that way for years. Others begin to display the symptoms described by others in this thread, but you can’t address those symptoms accurately without jumping through the testing hoops so the provider can choose the appropriate therapy, which could be as simple as a couple pills a day. I would trust that if your oncologist is not recommending “wait and see” he or she has staged your situation so you might want to ask them to explain the staging system. You might want to see a hematologist/oncologist rather than a regular oncologist.

Hi @philipschuyler , I was dx'd in Apr'24 with CLL. I had not noticed any symptoms, but I had a high WBC count at my physical in Dec'23 so my GP suspected. In my case, it took 3-4 months to get a diagnosis. I started at the UHealth in Mpls, but as it was taking months, I reached out to Mayo.
As it turned out I had some barely larger lymph nodes, a slightly larger spleen (one reason for the CT scan), and CLL in my bone barrow. This combo put me at a "stage 3" so my Mayo doc started me on Zanubrutinib, no chemo. A pill I take 2x/day. No issues/reactions for me.
Everyone is different. Many ppl are fortunate enough to be on "watch & wait" for many years. Others not so fortunate may get much worse symptoms. I feel quite fortunate with where I have ended up so far.
As a very curious & pragmatic person, I want all the data I can get my hands on. I'd much rather make informed decisions about my health, versus the "Que Sera, Sera" approach to life.
For me, CLL has impacted my immunity so I mask up when I feel it could help, walk around/avoid crowds... and get sick more often. I ended up catching two bug in Italy last fall, one which put me in the hospital for 3 days. Now, I'll be sure to carry antibiotics on any trip. I also started getting IVIG infusions to help boost my immunity. Not everyone needs that.
I hope this helps!

@loribmt
Thank you for grounding me in all this.

My husband has no other symptoms and feels well. We live in the Atlanta area and are going to see a hematologist/oncologist at Emory University in Atlanta. I’m assuming they’ll be able to run bloodwork there. Can flow cytometry test results come back during an appointment? Do you know?

Thank for your support. I’ll let you know how the appointment goes. I appreciate your help and your support.

@rimmy2 Happy to help out! ☺️ Your husband should be in great hands at Emory. They will have the capacity for all the testing required.
I’m not sure if flow cytometry results will be completed during the first appointment. From what I remember, sample preparation to analysis can take from one to four hours depending on the complexity and the number of samples.
So, you’ll know more in a couple of weeks. ☺️

@loribmt
Thanks so much 🙏🏻

Hi @medht I was able to translate your message to say that ‘I am or I have’. Were you diagnosed with CLL-chronic lymphocytic leukemia?

مرحبا @medht تمكنت من ترجمة رسالتك لأقول "أنا أو لدي". هل تم تشخيص إصابتك بسرطان الدم الليمفاوي المزمن؟

@rimmy2 depends on the bloodwork- what were the WBC and AL numbers? Or others outside range? CBC and CMP are the basic tests to start with

@philipschuyler Lori has good advice. Also check out CLL Society website. Be sure you’re seeing a CLL expert hematologist.