Anyone have chronic lymphocytic leukemia (CLL)?

Posted by hikerny @hikerny, Apr 1, 2025

Any individuals with a CLL diagnosis?
Cliff

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Apr 21 8:15pm

In reply to @embee85 "Hi everyone, I was diagnosed with cll ten years ago-stage 0 and that was the norm..." + (show)

@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 | @embee85 | Apr 22 6:11am

In reply to @colleenyoung "@embee85, that sounds like a tough year. If the doctor (hematologist?) doesn't think your issues of..." + (show)

@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

joycelen | @joycelen | Apr 23 2:56pm

In reply to @embee85 "Hi everyone, I was diagnosed with cll ten years ago-stage 0 and that was the norm..." + (show)

@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 | @embee85 | Apr 23 7:40pm

In reply to @joycelen "@embee85 I think that is just a mantra that docs use because they do not want..." + (show)

@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

mcconachie | @mcconachie | Apr 24 9:45am

Yes but am still on the wait and see

dorothea58 | @dorothea58 | Apr 25 8:28am

I have cll. I had to switch to Mayo to get straight, honest responses. I understand a lot more now.

philipschuyler | @philipschuyler | Apr 25 3:58pm

Though I have no symptoms, I was recently diagnosed with CLL. In the same conversation in which I was told this news, the oncologist told me that I'd need a CT scan and a bone marrow biopsy, which seemed like overkill to me. I made the appointments, but then I chickened out and canceled them. Now I don't know what to do. MUST I find another oncologist? What is most likely to happen if I do nothing at all? Any feedback appreciated.

ppolockaz | @ppolockaz | Apr 25 4:09pm

You need an oncologist who can explain better, CT scan will just lead to a PET CT so may as well do that first, why a bone marrow biopsy? Unless blood tests dictate that. Get answers and WHY’S, and look up protocols for your specific blood results

Lori, Volunteer Mentor | @loribmt | Apr 25 7:24pm

In reply to @philipschuyler "Though I have no symptoms, I was recently diagnosed with CLL. In the same conversation in..." + (show)

Hi @philipschuyler. Chronic lymphocytic leukemia is generally a very slowly developing form of leukemia. Frequently CLL is found randomly through bloodwork with routine physicals because of the lack of symptoms in the initial stages. Often people can go years without any treatment until symptoms become more pronounced such as night sweats, low grade fever, fatigue, unexplained weight loss, swollen lymph nodes, changes in blood counts, etc..

It’s usually not necessary to have a bone marrow biopsy (bmbx) to diagnose CLL. Though a bmbx may be helpful confirming the diagnosis or evaluating the extent of the disease. Also, unless there’s a specific area of the body your oncologist is concerned about checking, such as a swollen lymph node, a CT isn’t commonly used. As fellow member @ppolockaz mentioned, a PET scan would be more commonly used than a CT.

You asked what would happen if you did nothing at all. That is your prerogative as a patient. I’m not sure it’s warranted to find a new oncologist at this time. But it is important that you’re comfortable with your doctor and feel they can relate to your concerns regarding the BMBX and CT.
Much of the treatment going forward depends on what your blood work shows and the potential for your CLL to progress. Your doctor may use the BMBX to help stage your CLL.
If this were me, my next step would be to contact the doctor for a consultation and discuss the concerns. Ask why you need the tests. Ask if staging has been done for your disease or if the BMBX would be helpful.

Here’s a link to the Mayo informational article on CLL: https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428

Do you have any swollen lymph nodes that your doctor physically felt? Have you experienced any symptoms related to CLL that you’re aware of?

rimmy2 | @rimmy2 | Apr 26 8:00am

In reply to @loribmt "Good morning, @rimmy2. It’s way too early in the game to jump to conclusions with a..." + (show)

@loribmt

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?

Jump to this post

@loribmt
An MD was covering for the NP we see. The MD communicated with my husband via Mychart about his yearly bloodwork even before our physical appointment on 5/5 and said she wants him to see hematology/oncology. We have an appointment for 5/12

I was wondering, could you tell me what to expect at this first appointment? Do they do their own labs there? Do you think we’ll have answers at the first appointment. This is weighing heavily on us. Thanks in advance.

Please sign in or register to post a reply.