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.
CLL: what symptoms do you guys get for CLL? I'm... - CLL Support
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.
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.
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.
"You MIGHT have cancer"? Unbelievable! A doctor should never say that!
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.
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.
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.