Anyone have chronic lymphocytic leukemia (CLL)?

@dorothea58
Thank you. It's good to get info like that on supplements. Can you tell me which Assistance Fund you are referring to? It's such a broad name that I'm sure there are many of them. Do you mean at CLLSociety.org?

You know, I feel pretty old based on how I "feel", not my age. Age is just a number (I turn 72 tomorrow). I just feel like the me I've always been, but boy howdy, these days I feel like I'm ancient!

@loriskt The Assistance Fund supports a wide variety of diseases. You have to look at the site. I get support for a different disease. I also get help from Blood Cancer United. All the best to you as God blesses you with His own hand.

@dorothea58
Thank you - and the same to you!

@loribmt
Have you ever heard of having cll/small lymphocytic lymphoma at the same time? Or 2 distinct cell populations? One 28%- cll/sll the other 5% which is unclear.

The doctor said there needs to be more tests. My husband’s flow cytometry identified the flowing-

2 distinct cell populations. The report ended with-

Taken together, these results demonstrate the presence of 2 clonal B cell populations. The immunophenotype of the
predominant population (28% of the total sample) is characteristic of chronic lymphocytic leukemia/small lymphocytic
lymphoma. The significance and relationship of the second smaller population (5%) is unclear (not typical CLL
immunophenotype and different light chain expression). This population may represent non-CLL type MBL or low
level involvement by an unrelated B cell lymphoproliferative disorder. Correlation with clinical and other lab data is
suggested (evaluate for splenomegaly and lymphadenopathy to exclude involvement of other sites.)

I’m not asking for a diagnosis, just wanting to know if you or anyone on here has had 2 distinct cell populations. One of which isn’t evident of what it exactly is.

Thanks in advance.

Hi @rimmy2 Yes, it is possible to have CLL and SLL at the same time. I’m away from my computer right now so I can’t do justice to a full search but this is one discussion I recalled with a member who has both diagnoses.

Here are two replies I’d written to @tatayababa who had been diagnosed with both conditions. They contain information that might be helpful for you.
https://connect.mayoclinic.org/comment/813986/
https://connect.mayoclinic.org/comment/815368/
You might find more discussions by typing in CLL + SLL in the search bar at the top.
I’ll be back online tomorrow morning and can help you further. ☺️

@gardeningjunkie
Hi I was diagnosed with CLL from a blood test 15 yrs ago. Of course I had the immediate cancer shock. I’ve had annual blood tests since then and honestly the only symptom I had was an occasional bout of fatigue. I am 74 so it could have been aging a little. Most recently my blood results showed not much change in “numbers” but reading the results on my chart! It was scary! I now know not to dwell in the report but just check that the numbers are very similar from all the past numbers. I’m currently on a 6 month blood test due to a new doc I think. I leave it to them to tell me and not just panic because I see something different! I’m not trained to read and recognize the nuances! I’ve made th choice to relax and watch and wait and not expect to hear bad news. I’m happier that way! ❤️

@loribmt
Thank you for respecting.

We’re mostly concerned about that 2nd 5% group that is not cll/sll but is not identified via flow cytometry. It had me very scared.

Wondering if anyone had 2 separate monoclonal groups. One cll/sll and another separate unrelated one. The pathologist didn’tknow what it was.

Thanks

Hi @haroldgoerzen. Not sure how you sneaked in past my radar, but I want to belatedly welcome you to Connect! ☺️
Reading through your reply to @suzjlance I see you intially were diagnosed with MBL. Monoclonal B-Cell Lymphocytosis. That is a condition which can lead to CLL over time.
A little more on MBL from Healthline.com
https://www.healthline.com/health/cancer/monoclonal-b-cell-lymphocytosis
Now that there has been a progression CLL, you’d like to learn a little more about your condition. Hopefully you’ve been able to read through all of the conversations from the first posting in this discussion to see that CLL remains one of the more treatable forms of leukemia. There are links imbedded in the conversations informational articles and websites on CLL. Many people may go years without requiring any treatment.
What has your doctor talked to you about in regards to the staging of your disease? Was there any mention of possible treatments down the road?

Hi @rimmy2 In followup to conversation from yesterday, from my understanding, there are other monoclonal groups such as MBL which is another form of lymphocytosis which can progress to CLL. Here’s a link to an article on MBL just as an example. https://www.healthline.com/health/cancer/monoclonal-b-cell-lymphocytosis

Your husband is still in the early stages of defining his CLL diagnosis. There can be so many little nuances in our blood chemistry. While we fit a basic ‘mold’ no two of us are alike. So it can take a little sleuthing sometimes to refine a diagnosis. Your husband’s case seems very stable and nothing is changing rapidly. So give the pathologist and your husband’s doctor time to work through this. CLL is a very treatable form of leukemia if your husband ever requires medication.

I have CLL and LPL. Diagnosed few months ago through blood work and bone biopsy. The only symptoms I have is fatigue and weight loss. I recently noticed my voice is getting hoarse. Other people notice it also. I read it was a symptom of CLL. Does this mean it might be affecting my lymph nodes? Or my CLL is progressing ?