CLL

[__jessvr]

what symptoms do you guys get for CLL? I'm afraid I might be diagnosed with CLL and I just wanted to know a little heads up.

[getnstarted]

Hi Jess. For early stage CLL, there aren't usually any symptoms at all, except perhaps some fatigue. I'm a little over a year in...the doc is mostly concerned with checking how many lymphocytes you have in your blood. They usually don't recommend any treatment until those counts are pretty high, and you're feeling lousy, which typically takes quite a few years. Until then, you try to live as healthy as you can and not freak out (which is actually the harder of the two). ;-).

Good luck my friend.

[__jessvr in reply to getnstarted]

Yeah I understand. I'm always tired even when I rest I wake up exhausted. I took some blood test and my CBC came out abnormal. My doctor told me I might have cancer. I have had night sweats, fatigue, and bone pain.

[Ausrine]

I was stage 3 when diagnosed.

I was sweating at night and had bulky lymphnodes.

[__jessvr in reply to Ausrine]

How did they noticed you were diagnosed? What test did they exam you for?

[Ausrine in reply to __jessvr]

I also had chestbone pain if I pressed with my fingers.

At first they took a simple blood test (wbc was 86 if I remember right) and then took bone marrow biopsy which confirmed CLL it took 16 days for the results to come.

[__jessvr in reply to Ausrine]

Did you ever took any CBC tests?

[Ausrine in reply to __jessvr]

Yes CBC was 30 when I was diagnosed, but don't pay much attention to CBC as it can change in one day, it's not an indicator .

ALC is more important

[Bubnojay]

Jess

What makes you ask this question ?

Bubnjay1

[__jessvr in reply to Bubnojay]

Hi, and because my CBC blood work test came out abnormal. And I usually have night sweats, and headaches. Have tons of bone pain. And my doctor told me I may have cancer

[Corin850]

Why are you afraid you might be diagnosed with cll? How old are you?

I'm 47. Diagnosed and first treated aged 38. I got flu or similar like every six months for three years from aged 35 and on diagnosis wbc was 33 haemaglobin 12 a few lymph nodes swollen, night sweats.

[__jessvr in reply to Corin850]

Hello, and because my doctor took some CBC test and they came out abnormal. He told me I may have cancer., but not quit sure. I'm scare I might have cancer. And honestly I'm always tired all the time, I have really bad headaches and I have night sweats. I'm only 20

[Corin850]

If you are 20 I doubt it's cll. You should be diagnosed properly quickly. You need to see a good doctor quickly to relieve your anxiety. Best wishes.

[Newdawn Administrator]

Jess your symptoms and blood count changes could be due to a thousand and one medical reasons none of which involve cancer. If your doctor suggested cancer at this stage, then he was very wrong to do so without definitive evidence.

I've never heard of a 20 yr old having CLL.

What does your doctor intend to do next Jess? Presumably he didn't mention CLL but you've been googling to find a cancer that might fit?

Please see the doctor again quickly to discuss your worries because sites like this will only spook you unnecessarily.

Good luck,

Newdawn

[Ausrine in reply to Newdawn]

I was diagnosed with CLL at the age of 18

[Newdawn Administrator in reply to Ausrine]

I'm sorry to hear that Ausrine because it's extremely rare.

My concern for Jess is that she finds out for sure rather than attributing symptoms to a condition that may never have been mentioned to her. I'm sure you were keen to receive a medical diagnosis rather than one from a health forum.

Hope you're doing well. Tough enough to have this decades later.

Newdawn

[Ausrine in reply to Newdawn]

Yes I have to agree , it's very rare thank you , wish you well

[Hidden]

"You MIGHT have cancer"? Unbelievable! A doctor should never say that!

[Bubnojay]

Hi Jess

Do you have a support network like friends and familiy you can rely on. I am concerned that you are searching the web and in the process may be scaring yourself as there is a lot of unreliable information out there.

Do return to you Doctor, ask for a copy of your blood test results and ask to have them explained, then if further investigation is required ask what specialist you are being referred to. Try to take someone with you in case you can't remember everything.

Don't be afraid to say how anxious and worried you are.

Once you have a definite diagnosis you will be able to join the communtity which will best support you on HU. If it is CLL we will welcome you and help all we can.

Best wishes

Bubnjay1

[MsLockYourPosts Passed Volunteer]

Jess - take a recording device or use a phone app that records during your appointment also. It is very hard to process everything said when we are stressed. Your doctor should have talked with you about a plan to determine what is causing your lab numbers to be out of line. You should also get copies of all tests so you can see exactly what is out of line and by how much. A CBC has several components, so you need to know exactly what is "abnormal". A cold, fighting the flu, or dealing with an injury can cause an "abnormal" CBC. You need to insist on answers.

Please let us know what your doctor says. We care, and can perhaps help you find the right support if there is something that needs medical attention, but first you need to stay away from Google and deal face to face with a doctor who can give you answers, even if it means changing doctors.

[LynnB1947]

I was diagnosed in 2013 at 66 with SLL. Symptoms: unexplained fever & night sweats. Chest x-ray revealed enlarged lymph nodes. Follow-up with chest CT scan. Biopsy of bone marrow confirmed SLL (kissing cousin to CLL). Dr. said I had probably had it for 5 years or more. My blood counts were in normal ranges.

2-1/2 years later, I'm doing well under care of M.D.Anderson & treatment with ibrutinib.

Hopefully, your doctor's guess is a false alarm & nothing serious.

Lynn

[Jsk1950]

Hi Jess .what did you do for work ?

[SouthFloridaLady]

I was asymmetric, and was diagnosed through a yearly mammogram.