CLL leukemia: Just diagnosed, what can be done?

I was diagnosed with CLL in about Jan 2023. Wait and watch. I go back in in June for labs. Ill admit my hematologist is not good at explaining things. I didnt really know what questions to even ask. Next trip in Ill have several ready.

Hi @aleeab, Welcome to Mayo Connect. This is a perfect support group discussion for you to join with your newly diagnosed Chronic Lymphatic Leukemia. It tends to be a slowly developing conditions that often doesn’t require any treatment in the early stages.

This particular discussion about CLL has a ton of really useful information from many of our members who also have CLL. It should give you plenty of topics to cover with your doctor at your consultation appointment.

I encourage you to read through all the initial comments posted back at the beginning. You can access those by scrolling to the top of this discussion where you’ll see a box marked “First”. That will take you back to the original replies for @kegraves regarding her husband who was newly diagnosed with CLL at that time.

Your tests results showed “Peripheral blood, flow cytometric immunophenotyping” basically that means: When you have signs and symptoms that your doctor thinks may be due to leukemia or lymphoma they will run this test. It helps diagnose and classify a blood disease.

The blood sample taken, which is your peripheral blood, showed an abnormality in your blood cells. In this case, a tendency towards CLL. This article from Mayo will help explain it a little better.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
Kappa light chain restricted~ A kappa free light chain test is a quick blood test that measures certain proteins in your blood. It’s just another test that was run on your blood to help diagnose a blood condition.

I know all of this is hitting you out of the blue. I’ve had my own experience with blood cancer, now 4 years in remission and feeling fantastic. So don’t let this diagnosis have you feeling hopeless. You may not need any treatment for some time and there are medications available to help slow the progression of the disease.

Were you feeling ill when this was discovered or was it with a routine exam?

Thank you Lori. This was a routine exam with blood work. My family doc had my blood done twice then sent me to the cancer doc. I will read your recommendations. All will help me with the questions I have to ask.

Keeping in mind when you read the conversations that not all will apply to you. We all have our own experiences but I think you’ll find some very encouraging replies from people who have had CLL for many years without any issues.
It’s all overwhelming in the beginning but it helps to speak with people who have gone down a similar path. 😊

When is your next appointment? Would you mind if I check back in with you after that, if we don’t hear from you before then?

At this time, I do not wish to be contacted. My wife is seriously sick, and I am sick as well. It's been tough on me trying to manage two totally different diseases.

When it's time for me to talk, I will contact you first.

OK?

Thanks everyone for understanding my position.

I find much information on the Internet is worth its weight in Gold.
I have been told some of the recommended treatments will kill most within 5 days.
Just make sure your Medicine comes from a known source.

Most always verify through your Doctor or Vet what is safe, and what "Is NOT" safe to take.

This site, "the "Mayo Clinic Organization", I have found to be 100% correct with their advice.
And it appears they do a great job of monitoring this site. I don't think I have ever seen a post that was considered BAD or FALSE! If I did find one, I would email it to the Mayo Clinic immediately. I am sure they would address the comment out immediately. JMO, DJH

CC: after 5 blood tests showed a high WBC with no simple explanation found, I was finally referred to a hematologist. Flow cytometry confirmed I have CLL and FISH/Chromosome blood tests identified the type and stage. Mine is a deletion involving Chromosome 13 so the prognosis is good. Now on 6 month check-ups and blood work . So far no bone marrow tests needed. I had one when I was 14 years old and the only problem was from the penicillin shot in my rump the day before. The pressure and sore hip were not a good combination. No sedation.

Hi @buffalobill Welcome to Connect…and you’re right, we do try to make sure the information in our forum is helpful and not harmful. So if we do miss something that you feel needs reporting, it’s simple for you to do so. At the bottom of every reply there are 3 dots… on the right. Click there and scroll to the bottom of the dropdown menu. It says Report Comment. Just click that and write your comment/complain in the box and click send! A moderator will take a peek and do what’s warranted according to the rules and bylaws of the forum.

I noticed that you wrote earlier and mentioned that both you and your wife are ill. That can’t be easy to have both of you feeling down at the same time. Is there any information I can help you find?

@normahorn ; I too have the deletion involving Chromosome 13 and my hematologist said thats good; best news given the diagnosis; how long ago were you diagnosed? I was diagnosed Jan /23; enlarged lymph nodes are my only symptom; im having 3mth check ups, CT scan; bloodwork;

I was diagnosed in Sept and will have my 7 month follow up visit near the end of May. It was supposed to be 6 months but got moved back. In a way that was reasuring as my oncologist must not be worried. Symptom free as far as I know. I had a CT scan in May looking for an embolism in my lungs. Negative. That was at the same time as ny elevated WBC was discovered.