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.
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
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
a lot of sites for CLL also reference CML- some of the treatments are the same, thankfully the newer non-chemo ones- don't read too much at once tho- it will make you nuts- I didnt listen to anyone when they told me to not do too much research, telling myself it was important to be proactive and educated about my disease- W & W can make you feel helpless- but I learned (learning I really should say)to pace myself with info and research-
here's some sites
http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/leukemia/index.html?cmpid=google_leukemia_cll_ppc&gclid=CJHZvp_Uua4CFYmK4AodNjtYNQ
https://login.medscape.com/login/sso/getlogin?urlCache=aHR0cDovL2VtZWRpY2luZS5tZWRzY2FwZS5jb20vcmVmYXJ0aWNsZS8yMjQzMDc4LW92ZXJ2aWV3&ac=401
one is MD Anderson and the other Medscape
other sites are Leukemia & Lymphoma Society
I think in terms of your question about IBS/ Fibromyalgia- CML, Fibr/IBS are all diseases affecting the immune system so I think it's probably a case of stress impacting all the diseases, not necessarily worrying how each one will impact the other- stay good to yourself, meditation, yoga, eat healthy etc, spend time with people and things you love so that your contentment will reduce the triggers to your illnesses. We each have to learn to live with cancer that at times probably takes over our thoughts but thankfully, not yet taken over our lives-
For many of us, at least I know for myself, because I haven't yet started treatment and I look the same I told hardly a soul which left me in my own head worrying way to much- I know secrets have power over us so my not telling, cancer ends up having more power over our lives than we want it to- tell people make it part of your life not the focus- I've known of my CLL for 5yrs this April and it still freaks me out at times but much less than it used to and BTW, if all your doc told you when you asked for information was to "google it" maybe while you are googling, google compassionate, cutting edge hematologist/oncologists- Since our cancers are going to be with us for a long time, we need a supportive, informative rels with our doctors that can last a long time- keep shopping! I think he could have offered a bit more of support and information- take care!
I am not trying to scare any of you. My wife was an exception. If you do not have and major health issues other than the CLL then you should live a long life provide you take care of yourself. It is scary being told you have CLL, but it is not a death sentence unless you make it one. I did research on CLL and have know others that have lived well into there 70's. No matter if we have an illness or not I have learn to enjoy each day and life it as if it could be you last, because no one knows our time. Take Care.
mentioned if they have tried any natural ways of to control the
increase of WBC and slowing down the progression of the CLL.
I am on several herbs at this time. I am also getting Reiki healing and am on a lot of peoples prayer list. I'm also eating a lot of leafy greens and fruits. My Dr. told me I never did anything to cause me to get CLL and there was nothing I could do to stop it except chemo when my WBC get a lot higher. I want to prove him wrong.
You can call me Perky.
I was just diagnosed with CLL,and it's so overwhelming to learn all about this sickness.
2 years ago an orthopedic told me that I needed to see an oncologist because I have swollen lymphnodes .Pet scan came back fine,and all of the blood work was ok.I was so relieved.
2 years later I got my regular mama gram done and my nodes under my arms were very swollen. They did a biopsy 2 days before Christmas Eve,and 2 weeks later found out that I had this illness.
Had a CT scan and blood work done,and on Monday I find out what stage I have.
I feel just fine but achy when it is cold outside.
I just turned 60,and never dreamed of having something like this.
I do have a great attitude throughout this process.I just need friends that have this to talk to,so I don't feel alone.
I'm hoping to be at stage 0.
I do know that they are making great progress finding the gene that causes this illness through a friend that knows a lot about CLL.
Hopefully only 2-3 years away.
I pray that this will happen.
I will not let this consume my life!!!!
Let's here it for good days ahead!!
Perky
I learned I have CLL when a mammogram came back abnormal a few weeks ago. Will see the hematologist tomorrow to learn more. Hope to learn a lot from this group and it is always good to be able to share with people who understand what you are going through.
Blessings,
David