1. < Blood Cancers & Disorders

Is possible to know how long ago I got CLL?

Posted by dhamra @dhamra, Jun 26 12:10am

I am newly diagnosed with CLL. I am wondering if it is possible to get an idea of how long I have had this. I have had night sweats for a couple years and odd phases of extreme fatigue off and on, as well as intense nighttime anxiety. Driving doctor crazy with all the visits and test until a month ago when my tests revealed CLL.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 26 7:35am

Welcome to Connect, @dhamra. We can drive ourselves crazy trying to figure out when, how, or why we’ve gotten a blood cancer. I’ve been there myself and frankly, it’s just better to accept that this is the new starting point and whatever happened in the past is inconsequential. Blood cancers can happen for any number of reasons and unless there is a strong defining moment such as a heavy toxin exposure for example, it’s difficult to pinpoint exactly.

Since CLL (chronic lymphocytic leukemia) is generally a very slowly developing type of leukemia, it is entirely possible you’ve had this progressing over several years. Many people who are diagnosed with CLL find out incidentally through routine blood work at an annual physical, totally unaware that there may have been issues brewing. It’s often years in the making before treatment is required and according to statistics, this is one of the more treatable forms of leukemia. Some blood conditions can take a little time and sleuthing to get to a diagnosis. So that’s where you are now and with this new diagnosis of CLL, your hematologist oncologist will be able to form a treatment plan to help keep your disease from progressing and hopefully have you feeling less symptomatic.

I’ve always felt that knowledge is power. To help you learn a little more about your CLL, here are a couple of informational articles you might find helpful.
The first is from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
This, from verywellhealth.com
https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732#:~:text=Chronic%20lymphocytic%20leukemia%20%28CLL%29%20is%20a%20bone%20marrow,the%20worst%20symptoms%20at%20bay%20for%20many%20years.
What has your doctor discussed with you regarding possible treatment?

REPLY
1 reply
dhamra | @dhamra | Jun 26 8:33am

Thank you for responding.
I just saw the FISH results. Doc appointment isn't until July 7. We've already begun the process for 2nd opinion.

REPLY
dhamra | @dhamra | Jun 26 9:28am

I was recently diagnosed with CLL. I haven't had any treatment yet. However, in the last year or so, my hair has been thinning out a lot. My baseball hat is too big now. Is it possible that my hair is so thin? (I hope my head isn't shrinking! :))

I haven't been treated yet but have been losing hair, breaking nails, night sweats, fatigue for over a year. I keep reading that the treatments cause hair loss but I haven't had any treatment.

Thanks

REPLY
dhamra | @dhamra | Jun 26 9:48am
In reply to @loribmt "Welcome to Connect, @dhamra. We can drive ourselves crazy trying to figure out when, how, or..." + (show)
@loribmt

Welcome to Connect, @dhamra. We can drive ourselves crazy trying to figure out when, how, or why we’ve gotten a blood cancer. I’ve been there myself and frankly, it’s just better to accept that this is the new starting point and whatever happened in the past is inconsequential. Blood cancers can happen for any number of reasons and unless there is a strong defining moment such as a heavy toxin exposure for example, it’s difficult to pinpoint exactly.

Since CLL (chronic lymphocytic leukemia) is generally a very slowly developing type of leukemia, it is entirely possible you’ve had this progressing over several years. Many people who are diagnosed with CLL find out incidentally through routine blood work at an annual physical, totally unaware that there may have been issues brewing. It’s often years in the making before treatment is required and according to statistics, this is one of the more treatable forms of leukemia. Some blood conditions can take a little time and sleuthing to get to a diagnosis. So that’s where you are now and with this new diagnosis of CLL, your hematologist oncologist will be able to form a treatment plan to help keep your disease from progressing and hopefully have you feeling less symptomatic.

I’ve always felt that knowledge is power. To help you learn a little more about your CLL, here are a couple of informational articles you might find helpful.
The first is from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
This, from verywellhealth.com
https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732#:~:text=Chronic%20lymphocytic%20leukemia%20%28CLL%29%20is%20a%20bone%20marrow,the%20worst%20symptoms%20at%20bay%20for%20many%20years.
What has your doctor discussed with you regarding possible treatment?

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I am still intrigued with when all my symptoms started because a few days after my first covid vaccination, I had to go to ER because I couldn't urinate or poop. It was awful. Some kind of inflammation with prostate and bladder stopped up. Since, I have periodic issues with inflamation symptoms, night sweats, anxiety, hair loss, and fluctuations of extreme fatigue and weight. Now, I have diagnosis of CLL. Anyway this has been going on for quite a while. I guess this is all related to CLL all this time.

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