Anyone have chronic lymphocytic leukemia (CLL)?

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 ?

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.

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 @suzjlance Voice hoarseness can be associated with CLL but that doesn’t necessarily mean it’s progressing. This is also the time of year for allergies which can also impact vocal cords. But anytime there’s a noticeable, persistent change it should be checked out by your doctor. I think it would also bring you a level of reassurance to schedule a visit. Have you talked to your doctor or NP about your voice?

@loribmt Not yet. I don't have another appt until October. Should I mention it to my dr?

Hi @suzjlance If you’re noticing a progressive or persistent change in your voice then, yes, I’d at least mention it to your doctor. If this is something that’s more recent or might be allergy related you could give it more time.

Since you were diagnosed a few months ago with CLL and LPL but don’t have a followup appt until October, from my own experience, that tells me your doctor isn’t anticipating anything progressing quickly because of the time between appointments. But it doesn’t hurt to call the office and speak with the nurse because your voice change is noticeable to you and concerning.
I’m glad you found a doctor that you feel more comfortable with. What were your symptoms that had you diagnosed with CLL and LPL or was it found through the routine bloodwork for your MGUS checks?

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.

Yes to CLL. Just diagnosed. Exploring a Hematologist Oncologist on my plan. Right now my excellent primary Dr. Monitoring my blood count. Any news appreciated.

Hi @slats I just wanted to check in with you to see if you caught this reply from me the other day. It contains a link to CLL (chronic lymphocytic leukemia) discussions so you join in the conversations with other members who have CLL. https://connect.mayoclinic.org/comment/1565636/

You mentioned that your primary doctor diagnosed and is monitoring your blood counts. Primary care doctors can be terrific caring for our general health needs. However, if you’ve been diagnosed with CLL, it would be in your best interest to have be seen and followed by a hematologist oncologist. This is a specialist who is focused on blood related issues and blood cancers. Most people who are diagnosed may go years without requiring any treatment but it is important to note the stage and type of your CLL. It’s not a ‘one size fits all’ condition.
Have you gotten a referral to a specialist?
What does your primary doctor intend to do about your CLL?

@loribmt
Thanks for the excellent advice. I have an appointment with a specialist that my excellent PCP has set up. She had sent all my blood tests to him and now he'll take over my care. I understand that no treatment may be needed for a while. Since I will be 90, I hope none will ever be needed!!