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.

249 Members

219 Posts

0 Online

New2CLL 09/21/2014

As a 53 y/o female, I was recently diagnosed with CLL. My elevated lymphocytes, as with many of you, were detected during routine labs. I was referred to an oncologist/hematologist, who performed his own labs, which confirmed CLL, Stage 0. No lymph node involvement, spleen and liver ok. Currently in "watchful waiting" period. Easier said than done.
It's scary news, only to be told to watch and wait.

I'm trying to understand, my lymphocyte % was 41% (upper end of normal range), in October 2012. My labs from May 2014 showed 68%, and increase of more than 50% from where they were in Oct 2012. Does that mean anything?

My oncologist performed FISH, Flow Cytometry, Cytogenic and Molecular testing on my blood. FISH results state "Negative for abnormalities commonly associated with CLL/SLL. All probe signals within normal reference range." (That sounds like I don't have CLL, but I read that you can still have CLL with negative results like that. I'm confused.

If anyone has any information that they can share, I'd really appreciate it. My head is swirling, and I'm reading everything I can get my hands on, but it's only making me more confused. I have an appt for labs this week, and follow-up next week. I will ask my oncologist, but in the interim, if you guys can help me, I'd be very grateful.

Is the lymphocyte increase from 41% to 68% something to be alarmed by?

Thank you very much,
Carla

deleted_user 09/23/2014

Hi, New,
I am like you just diagnosed with cll, Doc says it may have started 8 to years ago. He ran some tests and confirmed it 2 weeks ago.
I'm at the begining stage and he wont know how fast its progressing till my next visit and results. My next visit , tests are 3 mos away!
I don't know my stage yet but from all my other tests and blood work it looks like I may be at stage 0 or 1.
Confirming your stage I am guessing, should be the first step.
Anyhow I came here looking for help along the way too.
Dang it don't know what else to say,
Hang in there....

New2CLL 10/05/2014

Hello Lonesomerider,

Thank you for your post. I wish I had some words of wisdom to impart. I'm still searching for them myself. I actually just ordered a book on CLL. I'm anxious to read it, after hearing others recommend it.
http://www.barnesandnoble.com/w/medifocus-guidebook-on-chronic-lymphocytic-leukemia-inc-medifocus-com/1108909831?cm_mmc=google+product+search-_-q000000633-_-9781499709919pla-_-book_25to44-_-q000000633-_-9781499709919&ean=9781499709919&isbn=9781499709919&kpid=9781499709919&r=1
Hope you might find it useful. Maybe try your public library, and try it before buying it. I tried, but it wasn't available at mine.

Take care, and perhaps we'll chat again.
Carla

LoriLeeMarie55 10/14/2014

I was diagnoses 3 years ago after having routine blood tests. I am still at Stage 0, no symptoms, no lymph node involvement. My oncologist says my platelets and every other blood test is normal except for my high white count. I know it is scary. It's awful to have to wait and wonder if and when things will get worse. It really does get better and most of the time I don't even think about being sick. Of course, when it's time to see the oncologist then things get real. The more I read at first the more confused I was too. I think sometimes the best thing to do is to just talk to the doc. He/she will have the most recent studied info out there. Take care.

deleted_user 11/12/2014

Hi, I'm also recently diagnosed with Cll. Reading your story, sounds very similar to my experience. I was diagnosed during routine BW. I am also stage 0, and hope to remain there for a long while. I have accepted it and have educated myself the best I can. I will not let this consume my life. Life goes on. I will get checked periodically to monitor my counts. Most importantly they said is to be proactive, get checked if I become symptomatic. In the meanwhile, live day to day with a positive attitude. This is initially alarming for sure, but seems there are alot of others in the same boat. So lets sail together and stay at stage 0! Best wishes to you.

igmaam 11/14/2014

It is scary and overwhelming, but ask your oncologist to explain things so you know what sort of beast you are dealing with. It may be a relatively harmless one you can use to advantage. "Oh, I'd love to help you move that piano, but you know I have leukemia..."

KathyCLL 12/10/2014

I was diagnosed a week ago, but who knows how long I've had this, since I never got annual checkups until 2yrs. ago.
I thought I was coming to terms with this, but I can tear up at a moments notice and am still angry about it. How long does it take to feel normal again?
I'm not sleeping well at all, thinking of nasty things to come, even tho the hemotologist said it could be years and years before I'm "sick". But really, who knows that for sure?
And now my husband says he had a nightmare last nite that he too got cancer.
I guess I'm just looking for some reassurance. Thank you

Lingeo 12/14/2014

Hi there,
I know it's very scary. I think having this support group is very helpful.And I just joined and it really is helpful knowing that you are not the only one. I am also going to check out the book you recommend.
Take care and enjoy your day!

LoriLeeMarie55 12/15/2014

It might take a while to feel normal again but the longer you go without symptoms then (of course) you won't always think about it. I've known about my CLL for over three years. Still at Stage zero. Now, I usually only start really thinking about it when I go for my blood tests before seeing my oncologist. (every 6 months.) I do think about it more than that but when you see things aren't changing overnight it is easier to not constantly think about it. Take care!

newguitar 01/09/2015

Hello everyone, I was diagnosed Sept of 2014 through a routine blood work...I had a bleeding ulcer this past June and when it was all said and done, after 2 scopes to bind it and 5 pints of blood, I healed well after a few days .....CLL showed up through the white blood cell count, doc said I've had it since 2013. ....I am a 71 yr old man in very good health and this threw me for a loop...first reaction: scared and then eventually accepted what I have, I feel great, only a wee tired at night ...waiting to hear from haematologist... glad I found this group and maybe we can share our journey.

New2CLL 01/13/2015

Hello All,

I wanted to touch base, with the hope that someone may have some insight to share. Diagnosed last summer, Stage 0, W&W. I've been seeing my Oncologist/Hematologist every 3 months for labs and follow-up. I had labs drawn last week, with an appt to see my Dr tomorrow. WBC and Lymph # and % have all decreased slightly. Granulocytes, while still lower than normal range, have increased slightly. I guess the one that has me the most puzzled, is the steady decrease in my platelets. In all that I'm reading, it sounds like all there aren't any "non-scary" reasons for platelets to drop. I'd really appreciate hearing from anyone who may have info to share. Thank you very much. As you all know, it's an emotional roller coaster... I'm feeling a bit nervous.

Lingeo 01/15/2015

Hi Everybody
Has anyone had chemo or infusions yet? How long do they take. Is it a few hours? Did it help your condition?
Don't know the stage yet but just trying to think what could happen next..
Lingeo

zeemama 01/21/2015

I had posted this in a different thread then saw that the last post was 4 years ago....reposting here.

"Hi all,

I found this site when searching for anyone that has chronic myelogenous leukemia and Fibromyalgia. I understand that CLL is different and I don't pretend that I'm going through the same. I just want to understand as all my doc has told me is to google it. >.<

Sorry to butt into the discussion, but would anyone be able to help or point me in the right direction?

Thanks!

P.S. I'm from Canada...... ""

LoriLeeMarie55 01/23/2015

Hi ZeeMama,

You are not butting in to the conversation. You are welcome to be here. We all have leukemia! CLL is the most commonly diagnosed leukemia in the western world. With this kind of leukemia you may live for years without ever having symptoms. I have know I have had it over 3 years with no symptoms. Just a very high WBC. I think your doc is right. You should google your kind of leukemia. I stopped doing that though after a while because it just caused me to worry more. If you know the basics though it might help. Take care!

zeemama 01/26/2015

Thanks for replying LoriLee, and making me feel welcome :)

I have googled it but I can't find any information on how CML will affect IBS and Fibromyalgia. Would anyone know where to look? I've searched the Mayo-clinic site as well as the Canadian National Cancer Institute's website. I did read somewhere that the lukemia can cause the IBS to become worse, but nothing about the Fibromyalgia lol. I'm a learner and a planner so I like to be well informed of things....I have patience, I just don't like the unknown - if that makes any sense lol.

baparson1 02/05/2015

Living with CLL or Caring for someone with CLL.
$25 for your opinion to take an online survey. Call
Bev at 636-578-5147 for more details

Join the Conversation