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

GOOGLE; This helps me understand my sister's cancer better
The key difference between SLL and CLL is their location.
With SLL, the accumulation of cancer cells occurs mainly in the lymph nodes but also can also affect the bone marrow.
With CLL (the more common of the two diseases), cancer cells are mainly found in the bloodstream as well as bone marrow.
SLL and CLL were once thought to be different diseases, but are today regarded as different manifestations of the same disease, referred to collectively as CLL/SLL

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?

@loribmt Thank you for all this information; i will reach out; I thought i was that person; but now i realize i have no idea what i am looking at regarding results and it upsets me;

Chronic Lymphocytic Leukemia

I have CLL and last spring/summer I had 1 lymph node enlarge along with a breast area removed. I also had covid and simultaneously developed a uti/kidney infection. I randomly developed hashimotos too recently. I think that’s how CLL effects you by making other things go wrong.