Anyone have chronic lymphocytic leukemia (CLL)?

@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.

@rimmy2 hi I cannot answer your question sorry but what I can do is tell you to make a list of questions you would like an answer to regarding your situation. Look on the machines site for info about CLL. I made up a list of questions for when I went to see the Hematologist and it helped me
Hope this helps

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?

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!

@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.

@loribmt
Thank you for all the information. I don't have swollen lymph nodes, night sweats, or any of the other symptoms, which is why I'm leaning toward doing nothing. I thought I'd wait until I do develop a symptom or two before looking for a new oncologist. (My last one had a terrible bedside manner and I could never get any straight, informative answers from him. Due to his unwillingness to be open with me, I'm not even absolutely sure what kind of cancer I have. But I'm so tired of tests and then worrying for weeks about the results (esp when they are so frequently inconclusive) that my plan is to not go to another oncologist until I have symptoms, so that I KNOW something is wrong. If you think this is crazy or stupid, please tell me. If you think this can be considered a not-crazy approach, please let me know that too.
Thanks again for all the info.
@philipschuyler

@mrgreentea
Thank you very much for the information. I get so anxious re the tests and then the waiting periods, and then the tests so often come back inconclusive. I'm considering not even going to another oncologist unless I develop symptoms because, right now, the worrying about cancer is wrecking my quality of life, whereas the cancer itself doesn't seem to be affecting me at all. If enough people tell me that this choice is crazy or stupid, maybe I'll reconsider, but I seem to be a wait-and-see CLL patient, so I can't justify more tests (esp invasive ones) at this point. I'd need new tests when and if I get symptoms at that time anyway, right?
@philipschuyler

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.

Hi @philipschuyler,

I would assume you'd need up to date tests. They don't end – I am getting blood tests every 4 months to monitor for any progression. I had numerous tests initially. Test after test, it seemed like a process of elimination. I also thought it a little frustrating too, which led me to Mayo. The CLL rabbit hole is quite deep and there is a lot to learn if you are curious. Take the blue pill and learn all about it, or the red pill and move on (for now) – my Matrix reference.

I'm not a medical doc, nor do I play one on TV, so I can't advise you. I wouldn't base your decision on anyone else's data because (as I noted above) experiences vary so widely.

I can say that once I knew what it was it was, things became clearer for me & much of the initial worrying went away. For me, all thanks to the current drugs that are available, CLL is something I just live with. I hope this helps.

Hi @philipschuyler As I’m reading through your reply, you and I approach our health and potential diagnoses differently. I’m a ‘rip off the bandaid’ girl, er, old lady. LOL
If I had a consultation with my doctor and was told I had CLL, I’d want confirmation of my diagnosis and then find out what I had to do to at this point in time to deal with it. (I’ve actually had leukemia and a bone marrow transplant so I am speaking from experience ☺️)
But with your past record of this ‘less than user friendly’ oncologist, I can see your position of dragging your heels until you actually have symptoms and ‘push comes to shove’.

How about a compromise? What if you at least had a second opinion to find out if you indeed have chronic lymphocytic leukemia and what the stage is. If you’re not having symptoms, it most likely is in a very early stage and may not require treatment for years, if ever. But at least you’d know what’s what. If you are in the early phase, your doctor would suggest Active Surveillance and have you drop in for labs periodically. Some patients are annual or every 6 months. Doctors look for trends in blood numbers so with monitoring they can keep tabs on any changes at a glance.

As we discussed before, an CT scan is seldom used for diagnosis but sometimes a bone marrow biopsy (BMBX) is necessary. Though CLL can be diagnosed with blood tests. If a BMBX is recommended, please don’t let that be a deterrent from getting the medical care you need so that you can live out a full and healthy life. I’ve had 13 BMBXs as part of my medical history and while they’re not #1 on my list of fun things to do, they were an integral part of my journey. You can ask for sedation which helps immensely for anxiety and discomfort.

Also, finding a hematologist oncologist now gives you time to find a good fit. What do you think?