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.

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LTBD7 08/17/2012

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

LoriLeeMarie55 08/17/2012

I understand exactly how you feel. It has been almost a year since I was diagnosed and I also have no symptoms. Every little ache and pain make me wonder if it is related to CLL. I am 56 and thank goodness in good health otherwise. Oh, well, I guess you can't be in really good health if you have CLL. I don't worry as much anymore and the longer I have it the less I think about it. I'm always worried at ever doctor appointment they will tell me something I don't want to hear. I was so happy to have found this site and other people that are going through this. My 29 year old daughter lives with me and is really the only one that knows what I'm going through. My other family members are supportive too but since I don't have symptoms they think everything is alright. Lets both hope and pray we stay without symptoms and get to live to be old ladies!

igmaam 09/01/2012

LT, I know it is hard to wrench your thoughts away from the CLL, especially when you are due for another checkup. I felt the same way, but put my head down and continued on until a series of other bad things piled up - bad new boss, empty nest, and finally having to put down my beloved dog- just put the frosting on my cake. Luckily my GP saw me going down and put me on a light antidepressant. It was amazing, stopped my brain from circling around endlessly and made me feel stable again. I still felt like me, but just steady and able to look ahead. I took it for oh, 6-9 months and that was enough, but if bad stuff piles up again, I have no fear of taking them again. So consider that, just for a while.

deleted_user 09/04/2012

LT - I, too, understand your worry. I've had cll for 1 l/2 years and there's not a day that I don't think or worry about what's next. I honestly feel double sided. At 66, I'm told something else will probably get me before cll; But unless you're receiving treatment or death is imminent, there's not too much compassion. I do have problems with fatigue, sinusitis, sleep and night sweats; and whenever I'm wiped out I tend to think it might possibly be the cll. My family just ignores my issues and really won't talk about it - Guess they're in denial. Exercise does help as long as it's not overdone - as well as eating healthy. I did read your entire story and wish you many blessings. We all need a little "cll" venting from time to time. "Watch and Wait" is simply not as easy emotionally as it sounds.

catlady72 10/21/2012

I so understand about worrying about every little ache and pain when you are in the "watch & wait" stage. I was and sometimes still do the same thing. I has been 4 months since I was diagnosed and not a morning goes by when I first wake up that CLL is not in my thoughts.
I have always been one of those people that the glass was "half empty" instead of half full. What helped me was finding a legitimate person to hypnotize me! She burned a CD of the session that I play at night when I am falling asleep that has positive thoughts. It has really helped!
I have also started doing yoga (for non-flexible) people and it along with learning to meditate has really helped.
I was one who thought I could never "quite" my mind to learn to meditate, but I have, and if I can do it, anyone can! :-)
I tried 3 different drugs for depression and had bad reactions to all 3 and decided the depression was better than the reaction I had to the anti-depressants. Meditation and yoga has really helped me.
Hugs to all of you!
Linda

deleted_user 10/23/2012

I'm right there with you. I was diagnosed about 6 months ago before I turned 50. I was in "good health." I feel fine, sort of tired and have been a little more prone to infections.
I have to say antidepressants helped immensely. I went from pure panic all summer to now being ok with it. I may need treatment within a year but I somehow feel now like if i do, it will be ok. I also couldn't sleep for months so am on Ambien too
I'm also trying to be healthy and exercise more. Looking for some sort of physical challenge to work to. Great to have all of you out there.

Lara116 11/11/2012

Totally identify. Was officially diagnosed sometime middle of 2011 (elevated White count was first picked up end of 2009). What I found out was that some of my symptoms that I thought were from the Leukemia were actually from medications I was taking. Like my neck/shoulder muscle pain went away when I was switched to a different statin, and my incessant cough (which I thought was lung involvement from the CLL) went away when I was taken off Lisinapril (BP Med). Needless to say, I also worry about liver, lymph nodes, etc. This is why we have this Forum, because in my case there is not much of a relationship with the Cancer Center till it is time for my 6 month appointment. By the way I turned 70 this year (hard to swallow also). Abnormal White Count first noted at age 67 1/2. I had not had a CBC for many years prior to end of 2009. The only reason Doctor agreed to do CBC, since I needed it for Pre-Op Workup for Eye Surgery and that is when high white count was noted for the first time (Doctors often skip the CBC on older women as a routine test)
Hope you keep sharing on this Site. I does help. Best Wishes,
Lara

deleted_user 11/15/2012

I just found out that I have CLL on Tuesday, and am so glad to have been able to find this support group. It is very odd to hear the word "leukemia" and not know quite what to do with it. I know I will have to be checked every few months, but, other than that, I was told that I am fine. I feel good, although I'm always a little tired, and this was only discovered because my white cell count has been going up for a few years. Still, like the rest of you, the word "leukemia" is hard to digest. I have a positive attitude, but am just a little cconcerned as to how to best tell my adult kids, two who have had types of cancers that needed treatment. Thanks for listening and thanks in advance for any advice you can offer.

deleted_user 11/17/2012

I just stopped in on this topic because a former friend of mine has CLL , she was diagnosed at age 53 and that is 13 years ago. At the time, we were very close friends and I was quite upset so I asked my primary care physician about this disease. His exact answer was, "If you have to have cancer, this is the cancer you want. It can remain dormant for a lifetime." I know her immune system is compromised from another condition but so far as I know (I haven't spoken to her in 20 months, for very good cause) she lives normally, works, is active, and has her blood work checked by a specialist every three months. Relax. Worry decreases your qualify of life and doesn't help.

deleted_user 01/24/2013

Try meditation. Get some books on it cause you do not have to be like that I assure you. I have been reading Edgar Cacey and this has helped me greatly. I found out last Spring and currently feel fine. I think getting our head in order is a must because your physical health depends on it.

deleted_user 01/25/2013

I'm right there with you, I was diagnosed in late Nov./early Dec. 2012 & have MANY things that have been wrong before that & wonder if they were related to the CLL but the Oncologist said "no" to all of it...Basically I have CLL but it doesn't cause anything to be wrong with me (fatigue, swollen glands, no spleen, sinusitis FREQUENTLY etc.) but yet I read about so many others with similar symptoms (except the fact that I have no spleen nor have I for 20 years but according to the oncologist, that too is just a coincidence (I had Mono & the spleen kept growing and growing...)
I pray that sometime in the next few weeks (I am going to see specialists in San Diego & Stanford just for my own piece of mind) I can move on & just accept this but I too am not the best at "watching and waiting" Just remember you are NOT alone :)

CTGailCO 01/26/2013

Hello, I was diagnosed in March 2008. This was 2 years after a breast cancer diagnosis. I am still at the watch and wait stage and usually feel fine. It is hard to relax with CLL always along but each day is a present. I wish you well.

deleted_user 01/28/2013

I am a 38 year old male who was just diagnosed with CLL last week. On the Sunday before I ran a 5k in 23 minutes and can bench press almost 300 lbs....so who ever is saying that you must be in NOT GOOD health is full of mularchy. My blood work with the exception of my WBC is/was prestine. I do come from a lineage of Eastern European Jews....but no other predispositions or symptoms. It can happen to anyone...live life folks!

LTBD7 01/29/2013

yjb9,

I appreciated you comment.

If you don't mind sharing, how is it that you came to be diagnosed with CLL?

LTBD7 01/29/2013

Sorry -

That should say 'jyb19'

LTBD7 08/11/2014

Wow! It's been almost exactly 2 yrs since I posted that message... Time flies!
I could have written that post today.
It's been a long time since I've been to this site. I have an appointment tomorrow. I guess that's what brought me back here. I've been nervous and anxious for days. I always get like that.

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