CLL leukemia: Just diagnosed, what can be done?

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.

@normahorn Thats good! I have no nightsweats; im feeling well ; i would have never known about this CLL/SLL diagnosis if i didn't have a mammogram Dec 29th and this all started.

I have had night sweats since menopause so would not even think of them as a symptom.

Hi @normahorn, hah, you’re like me…we start thinking and it can be dangerous! 😅 Those extra white cells when we have a blood cancer are generally not healthy white cells so they wouldn’t really be protecting us against covid. Our best defense, when we’re immuno compromised is to keep up with our boosters.
They may not keep us from ever getting Covid but the goal is to prevent us from having serious complications from them by giving our body a ‘boost’ to make antibodies.
Have you had your Covid vax and the boosters?

Trying again.
I saw that a second bivalent Covid vaccine is nearing approval for us. That got me thinking, a dangerous thing to do. I have not had Covid, or if I did it was asymptomatic. Is it possible that our extra white blood cells, for those with stage 0 cll, protected us?

I know there is a new drug which MD Anderson uses on CLL. It is a miracle drug, in that it almost always destroys the CLL cells. Essentially, a new and great cure