Chronic Lymphocytic Leukemia (CLL) Support Group
Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.
My next appointment with the oncologist is two weeks from today so I am already getting a bit anxious.
I was diagnosed nine months ago...at times it seems like just yesterday. Like many others on this site, I was totally surprised by my diagnosis. I have been seeing my primary care doctor every six months for the last how many years and nothing has ever shown up in my blood work. I have had a mamogram ever year for the last fifteen years and nothing ever showed up there either. Then, last year, when I had my mamogram, I was told that some lymph nodes that appeared in the mamogram looked "puffy" and that I needed to have further evaluation. To make a long story short, I have CLL.
I am in watch and wait and have no symptoms. But I wonder if I really have no symptoms. Since last November, every twinge, pain, and uncomfortable physical feeling makes me think something is going on with the CLL. (Add to all of this, I just recently turned 50 and am going through what many women do at this age.) On days that I am particularly worried, I worry about the progression of this cancer. I worry if more is going on with my lymph nodes. I worry about possible enlargement of my speen and liver. I worry about things getting worse and wondering how badly do I need to feel before I know that things are progressing toward needing treatment. To be honest, since this diagnosis hit me from out of the blue, every appointment and every test makes me feel like I am going to be told that something else is wrong or something is getting worse. I have never been one to think like that before.
I realize that there isn't much else I can do at this point other than to continue to live my life, be positive, be healthy, and continue to be checked. I don't worry every day. I don't worry all day on the days I worry. It's just those moments that it seems it is all my brain can think about for a while.
If you have read this far, thank you. I guess I just needed to "talk" to someone who may truly be understanding of where I am coming from. It's just one of those worrisome moments.
LTBD7
I was diagnosed nine months ago...at times it seems like just yesterday. Like many others on this site, I was totally surprised by my diagnosis. I have been seeing my primary care doctor every six months for the last how many years and nothing has ever shown up in my blood work. I have had a mamogram ever year for the last fifteen years and nothing ever showed up there either. Then, last year, when I had my mamogram, I was told that some lymph nodes that appeared in the mamogram looked "puffy" and that I needed to have further evaluation. To make a long story short, I have CLL.
I am in watch and wait and have no symptoms. But I wonder if I really have no symptoms. Since last November, every twinge, pain, and uncomfortable physical feeling makes me think something is going on with the CLL. (Add to all of this, I just recently turned 50 and am going through what many women do at this age.) On days that I am particularly worried, I worry about the progression of this cancer. I worry if more is going on with my lymph nodes. I worry about possible enlargement of my speen and liver. I worry about things getting worse and wondering how badly do I need to feel before I know that things are progressing toward needing treatment. To be honest, since this diagnosis hit me from out of the blue, every appointment and every test makes me feel like I am going to be told that something else is wrong or something is getting worse. I have never been one to think like that before.
I realize that there isn't much else I can do at this point other than to continue to live my life, be positive, be healthy, and continue to be checked. I don't worry every day. I don't worry all day on the days I worry. It's just those moments that it seems it is all my brain can think about for a while.
If you have read this far, thank you. I guess I just needed to "talk" to someone who may truly be understanding of where I am coming from. It's just one of those worrisome moments.
LTBD7
Like you, I'm asymptomatic, and in "Watch & Wait" mode. That seems counter-intuitive to me. In any other situation in our lives, we fix a problem when it's small. It feels strange to "watch & wait" until this one gets bigger. But I get that there's no proven benefit to earlier treatment. So we wait.
I've been reading everything I get my hands on, to understand the disease. My hematologist (still getting used to saying "my hematologist") told me to remember that my disease is unique to me, and I may or may not experience symptoms or complications that other CLL patients talk about. He urged me not to work myself into a frenzy over every little thing. I'm trying, and I'll urge you to do the same thing.
I've started keeping a journal, writing every few days, sometimes once a week, just to record how I'm feeling. It's been helpful so far, and I'll try to continue.
I don't have many answers, but it sounds like were' walking similar roads (I'm 53 years old, with all of the fun that comes with menopause). I understand the need to "vent'... right there with you!
I suppose as time goes by it should be easier to live with this w/out symptoms (I have none), and yet, it's always going to be hanging over our heads; Wondering when the hammer's going to drop and we need the dreaded chemo, which has always been in my mind, barbaric.
I too have started wondering if past small problems was CLL. I have never been a fan of doctors, and only started getting annual checkups 2yrs. ago when I turned 60. White count was up a little first year and more this year, so was sent to a hemotologist. Now I'm sorry I'm getting checkups. What's the point of being terrorized by knowing, if there's nothing to be done until you're really sick? Which I think is odd. Shouldn't they be working on something to cure it BEFORE you get sicker?!
Anyway, I find it interesting that multiple people have mentioned sinusitis. I get that all the time, and just had 2 rounds of antibiotics to knock it out. Still have a cough from it. It seems the older I get, the longer it takes to recoup. But now, instead of chalking it up to "being older", maybe it's the CLL?
It's been a rough week, but my neighbor/friend texted me last nite and said "You are so Blessed"; have so much to be thankful for, like a wonderful husband and 2 great kids, and 2 new grandkids. And when I awake I should think of that; think good thoughts, good health, and try to believe it.
So instead of cursing WHY and this is BS, I'm going to change my mantra and say "I am so blessed, thanks for a new great day". And maybe, in a few weeks, I'll believe it. Because, in a way she's really right.
I am diagnosed to have cll.i never had any symptoms except one day i felt tired and went for blood test.now in three months my wbc has grown to 23000 from 20000.My Drs say that there is nothing to worry, keep going.I am trying to.I am trying all alternate possible therapies like ayurveda etc.I want to check whether it is possible to arrest even if it is not possible to reverse.I am considering this opportunity to find some solution which i can share with many so that they can be benefited.let us hope that i do
I have been reading about CBD (cannabidiol) and its ability to kill cancer cells. I just got some today and will post if it helps.
In 2012 I had splenic marginal zone lymphoma, and my spleen was removed. All was well until the summer of 2014 when I was diagnosed with CLL.
Since that time, i've gone on a ketogenic diet and started taking quality vitamins and supplements, and started an exercise program/biking. I've lost over 50 pounds and seemingly most of the little everyday aches and pains that i associated with getting older, but now realize are lifestyle-related.
Bloodwork is consistently good; you couldn't tell that I have leukemia by looking at the bloodwork results.
Just did some bloodwork, and also a CT scan last week - neck, chest, abs, and pelvis and after going over the results, we're going to decide whether to start chemo at this time.
Personally, I think I'd rather stay in watchful waiting.