Diagnosed with asymptomatic CLL 6 years ago: Starting to have symptoms

kellymorea @kellymorea, The systems are catching up to you! Sorry to hear that Kelly! It's a balancing act (PV and MF) I've gained weight and lost it since first hospitalization - Most of Nov 2020 and another hospitalization for 8 days in 2022 ; missed PV diagnosis 2020 but caught it in 2022. My daughter struggles with diabetic problems (witch adds stress to CCL) Your life isn't easy, glad your active and positive. I have cold urticaria so chronic bronchitis, sinus and living on antibiotics is normal for me all winter long (Goes away in the summer) All of Sept., Oct, Nov on antibiotics and last part of Jan to now and just given 14 days of antibiotics (I'm in Florida so warm weather next month and might get off of antibiotic until next winter weather) If i can stay out of air conditioning - only few summer fair-up from cold building! (NO COVID- 19 knock on wood but my entire family and neighborhood - been extremely lucky - No covid I feel for you! Prayers my dear friend- (this is normal stuff Born with CU and chronic winter infections sometime 6 months SUMMER IS FREEDOM! I'm healthy

Thank you

Go see a CLL specialist immediately! You may need treatment.

What made the doctor invesitgate? I have been diagnosed with CLL and SLL not really understanding the difference; had a CT scan this AM. i have no symptoms ; very anxious about all this.

Hi @tatayababa, I found some information for you that might help explain CLL and SLL, the differences between the two and how you can have both at the same time.
Here’s an excerpt from the Lymphoma Research Foundation
“Chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) are cancers that affect lymphocytes. CLL and SLL are essentially the same diseases, with the only difference being the location where the cancer primarily occurs. When most of the cancer cells are located in the bloodstream and the bone marrow, the disease is referred to as CLL, although the lymph nodes and spleen are often involved. When the cancer cells are located mostly in the lymph nodes, the disease is called SLL”

The full site can be found here: https://lymphoma.org/understanding-lymphoma/aboutlymphoma/cll/#:~:text=CLL%20and%20SLL%20are%20essentially%20the%20same%20disease%2C,the%20lymph%20nodes%20and%20spleen%20are%20often%20involved.
This is from Healthline: https://www.healthline.com/health/sll/symptoms-treatment-sll#symptoms

Both diseases can be very slow to progress but you’ll need to be monitored on a regular basis, sometimes every 3-6-12 months. That depends on the stage of the disease. But you don’t have to live in fear of this. Your hematologist/oncologist will be able to help you determine when and if you’ll need treatment.
Because there can often be no symptoms, sometimes this is discovered during routine medical exam and blood test. Is this what happened with you?

Thank you for taking the time to respond. Very much appreciated. My daughter was diagnosed with POT 1 gene last year; she has had melenoma, thyroid Cancer and lympohoma...she asked me my husband and our son to get tested; 1 have the PoT 1 gene; so i have been going for testing heart, eyes have been done; all good there; i had a mammogram Dec 29/22; discovered enlarged lymph nodes in both axillas; MRI and this a.m CT scan; march 10 i see the hematologist for results of CT and blood work; so scared of what they will find on the CT scan

Oh golly, you and your family are working through a lot of uncertainties right now. I’m so sorry to hear your daughter is facing 3 cancers. That had to be quite a shock. It’s good that you are all being tested for the POT 1 gene so that there can be a more proactive vigilance with your healthcare.

It sounds like you have a good medical team though, who is following through with essential testing. It’s so normal to be scared of what may show up on the tests. I’ve been there and know exactly how you feel. Test anxiety is awful, isn’t it? On so many levels…

You were completely caught off guard with your daughter’s diagnosis and then recently with your CLL/SLL discovery. There’s a lot coming at you right now. But you’re going to get through this one day at a time.
And you’re not alone in any portion of this…you’ve gained a huge family here with Mayo Connect. Most of us have dealt with some illness or have family members who have. I had my own odyssey with AML, a very aggressive leukemia but I’m now in a durable remission. So I want you to know that no matter what you may face with your results, we are all here for you! March 10 feels like a very long time away so try to stay positive and find rewarding / distracting activities to get you through the next few weeks!

How is your daughter doing with her treatments?

My daughter isn't showing symptoms so no treatment right now; she also was diagnosed with Lupus Nephritis 10 years ago so that is posing some issues if she needs treatment as well. Our grandchildren were over yesterday and yes a very good distraction!

@loribmt - I have CLL /SLL diagnosis - will CT scan results give me a definitive diagnosis of one or the other? Given the 2 diagnosis is there a chance i might have to start treatment? Anyone else has this diagnosis?

Good morning, @tatayababa, it’s my understand that imagining scans alone are not conclusive for diagnosing CLL or SLL. Blood cancers are located in the blood and bone marrow and don’t necessarily create tumors that would show up on the images. However a CT or MRI can be valuable in staging disease by showing involvement with lymph nodes or the spleen in the case of CLL.

CLL and SLL are essentially the same disease and treated the same. So it is entirely possible to have both CLL and SLL at the same time. The designation comes about this way: If most of the cancer cells are located in the bloodstream and the bone marrow, then the disease is referred to as CLL, although the lymph nodes and spleen are often involved. When the cancer cells are located mostly in the lymph nodes, the disease is called SLL.

If your tests are showing an involvement of the leukemic cells in both peripheral blood (blood in your veins) and also in your bone marrow and lymph glads, that is why your doctor has diagnosed you as having CLL and SLL and if treatment is needed it is the same for both.

I found a number of discussions for you with members,
@zephyr @mena2020 who have (or family members) SLL and @mmpopovich who has both CLL and SLL
Here are several links to discussions with other members who also have CLL or SLL where you’ll meet @kegraves, @grandmah @mabfp3 @dmiles

~CLL Newly Diagnosed
https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/

~CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/

From the Mayo Clinic website this informational article on CLL
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/diagnosis-treatment/drc-20352433

This from Healthline.com is also very informational.
https://www.healthline.com/health/sll/symptoms-treatment-sll

Wish I could be more helpful for you regarding treatment. These conditions can be very slow to develop and quite often no treatment is required for quite some time. Your doctor has ordered the scans to so that they can stage your disease.
I know that all sounds horribly frightening. But it is just the term used to determine if treatment is required now or not. And if it is, you’re going to deal this head on and work through it! Most often it’s the fear of the unknown that really terrifies us. Once we know the answer it’s easier for our heads to wrap around the crisis and feel we have some control over our lives again.

I hope you’re able to talk this through with some of the other members. You’ll see they’re all in various stages from the Watchful waiting to having some form of treatment. I have a young neighbor man who’s in his late 30s. He was watch and wait for about 15 years. About 5 years ago, he began taking a medication that is 2 pills per day and doing really well. He shows no progression of the disease.

Waiting for the results and followup with your doctor is an anxiety situation for sure. Are you the type of person who likes to look at the results first before your consult?