I really appreciate all of the information above, especially all of the links from Lori. I was diagnosed with CLL a year ago. It was like a punch in the gut! Even though the oncologist said it was slow growing - all I could think of was people I knew who died of leukemia (she focused on "chronic" while I focused on "leukemia"). I have immersed in research and joined Mayo Clinic Connect, of course. I feel like I am a sponge for information on CLL (and other issues I have, like AFib). My CLL is Stage 0 and hope that will remain for many years. Although my counts fluctuate, I am stable. It is encouraging to read about others who have remained stable for many years.
I do not know what stage you are in or the nature of your CLL so this may or may not apply to you. Mine was diagnosed 2.5 years ago and is stable at stage 0. At my March biannual check-up, I was downgraded to yearly now with blood work biannually.
Hi Cliff. Chronic lymphocytic leukemia (CLL) generally slow to develop and not uncommon for treatment to be delayed. I know, just hearing the word leukemia can be frighting. But the good news is that CLL, statistically, remains one of the more treatable types of leukemia.
If you’re looking for encouragement, @nana120 posted in her reply to that she’s been stable for 10 years. Another member, @gardeningjunkie has one of the most encouraging stories of CLL. She was diagnosed with CLL over a decade ago and with no treatment, the disease has spontaneously regressed! Here’s her story: https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/
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More discussions can be found by simply typing in CLL in the top search bar.
To get you started, I’m posting some links below for you to read through. I think you’ll find them informational.
However, remember that each of us has our own, unique story. You may all be sharing the same diagnosis, but there can be differences in treatments, when to treat and response to treatments, etc. But the replies and the article links in the comments will give you a better understanding of CLL.
Yes, since 1996 with only having oral chemo 3 time when my white count became 80-100. I have been stable since 2015 with just blood work twice a year to check. It was scary at first, but I remember my first oncologist telling me to go about my life as though nothing had changed. It took a while, but eventually I did.
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I really appreciate all of the information above, especially all of the links from Lori. I was diagnosed with CLL a year ago. It was like a punch in the gut! Even though the oncologist said it was slow growing - all I could think of was people I knew who died of leukemia (she focused on "chronic" while I focused on "leukemia"). I have immersed in research and joined Mayo Clinic Connect, of course. I feel like I am a sponge for information on CLL (and other issues I have, like AFib). My CLL is Stage 0 and hope that will remain for many years. Although my counts fluctuate, I am stable. It is encouraging to read about others who have remained stable for many years.
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9 ReactionsI do not know what stage you are in or the nature of your CLL so this may or may not apply to you. Mine was diagnosed 2.5 years ago and is stable at stage 0. At my March biannual check-up, I was downgraded to yearly now with blood work biannually.
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Like -
Helpful -
Hug
5 ReactionsHi Cliff. Chronic lymphocytic leukemia (CLL) generally slow to develop and not uncommon for treatment to be delayed. I know, just hearing the word leukemia can be frighting. But the good news is that CLL, statistically, remains one of the more treatable types of leukemia.
If you’re looking for encouragement, @nana120 posted in her reply to that she’s been stable for 10 years. Another member, @gardeningjunkie has one of the most encouraging stories of CLL. She was diagnosed with CLL over a decade ago and with no treatment, the disease has spontaneously regressed! Here’s her story:
https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/
~~~
More discussions can be found by simply typing in CLL in the top search bar.
To get you started, I’m posting some links below for you to read through. I think you’ll find them informational.
However, remember that each of us has our own, unique story. You may all be sharing the same diagnosis, but there can be differences in treatments, when to treat and response to treatments, etc. But the replies and the article links in the comments will give you a better understanding of CLL.
Here are the links to replies or discussions:
~Diagnosed with asymptomatic CLL 6 years ago; Starting to have symptoms. With member, @tatayababa and others.
https://connect.mayoclinic.org/comment/815368/
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Another discussion:
Just discovered I have leukemia:
https://connect.mayoclinic.org/comment/1043133/
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One more…this discussion with @joeeduffy whose husband was diagnosed with CLL a few years go.
https://connect.mayoclinic.org/comment/1007740/
Feel free to pop into any of the conversations and ask questions! Are you in active surveillance or has your doctor suggested treatment?
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4 ReactionsYes, since 1996 with only having oral chemo 3 time when my white count became 80-100. I have been stable since 2015 with just blood work twice a year to check. It was scary at first, but I remember my first oncologist telling me to go about my life as though nothing had changed. It took a while, but eventually I did.
-
Like -
Helpful -
Hug
11 Reactions