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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Newly Diagnosed and feeling a little lost

I am a 45 year old female who was diagnosed with CLL on Monday. I have yet to see an oncologist but have some questions that I am hoping someone can give me some insight on. I guess my biggest question is that I noticed on my papers from the doctor that 70% of my lymphocytes are phenotypically abnormal. Hmm 70 % sure seems like a lot to me. I was told by my family doctor that I am a stage 0 but feel more like a stage 2. I am currently having pain in both of my sides and had no clue until I started investigating this disease that each side is where my liver and spleen is. I go for an ultrasound on my spleen in a few days to see if its enlarged. Can someone tell me how the doctor can know what stage you are by looking at the cell count? I am apparently B cell CLL from what the doctor explained to me. I am not experiencing any symptoms except the pains I mentioned previously and a rash of dizzy spells that seem to come and go. Some days they are non existent and other days they are worse. Not debilitating by any means, just a kind of "woah, better grab on to something to steady myself" kind of dizzy. I had a brain tumor in 1999 and it was removed successfully. It was not cancerous, rather it was a tumor called a colloid cyst. Have felt great ever since I had it removed. I am also experiencing extreme exhaustion and cant seem to summon up any energy. Anyone have any advice? Surely appreciate it.. thanks!

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Also, forgot to add, I am a GNA (geriatric nursing assistant) and am worried now about infection. It runs rampant where I am and there was even a recent outbreak of hepatitis A. Will I have to quit my job??? I love my job and would hate to have to do that. My wbc when I got dizzy started out at 17,400, then went up to 21,600 the next day and then shot up to 30,000 the day after that which was when I was admitted to the hospital to find out what was going on. That is when I was diagnosed. Then 3 days later my wbc dropped to 6,000. Pretty dramatic fluctuations! My doctor has explained to me that it is when the count is low that I need to worry about infection. Well short of having a wbc done every day how the heck would I know its high or low??? Such a confusing state to be in at this point. Knowing so little about CLL.
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I did not realize that they could tell t cells or b cells without a bone marrow test. I had one done a few wks ago--not as bad as I thought. I woulod not want to work in a hospital--too risky
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I dont think they COULD tell just from a blood test, I think they got the information from the flow cemetry they did.. I know I didnt spell that right lol but I am pretty sure thats how they could tell...
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Hi ravengirl
get over to crazysexylife.com.. join out leukemia-ites group.. read the book watch the dvd and you will know what you need to do.. I have CLL too and there are more of us there.
Deb
debbiedoesraw.blogspot.com
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Usually CLL is a slow type of blood cancer. After the first few weeks, or months, it just becomes a norm for you. I wo9uold advise you to get as much information as you can absorb try CLL Topics, CLL Forum, and for information and spiritual help, CLL Topics.com, CLL Forum.com, and CLL Christian Friends. As to having a CBC every day, is like taking your temp or blood pressure every fifteen minutes. Usually a CBC is eone every three months and your see the homatologist every 6 months. But remember, that Doctors don't treat blood counts, they treat the patient. Some CLL patients are on wait and watch for years and years. Has your dr done a flor cytometry, yet?













CLL Christian Friends, .com
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Please read my appeal re the need to inform the public of dangers of sleeping close to elelectric appliances and telephone equipment at:

http://freepage.twoday.net/stories/3038870/

Also, the need to do your research re the benefits of melatonin is extremely important. You can "google" melatonin lymphocytes EMFs and come up with facts re mechanisms and more. Other important studies on melatonin come up when googling Dr. Russel Reiter.

The above link explains some of the facts as to how melatonin has helped us significantly.

Our grandsons who were dx'd w/rare immune deficiency (pre-Leukemic) got better when we moved their beds away from electric meters (powerwalls).

My website is: www.guineapigsrus.org

Extremely impportant also to let persons know that low levels of melatonin are found i persons with Leukemia, Parkinsons, Alzheimers and patients with autism-spectrum disorders.

Dr. George Carlo, Epidemiologist and former scientist for the cell phone industry has a website: www.safewireless....think it is dot net but googling his name should bring up that site and the Science & Public Policy Institute website access info.

I interact w/public every day as an EMF/EMR researcher/activist. Numerous persons are sleeping on top of cell phones or charge cell phones close to their bodies. Also the heated mattress pads are linked to Alzheimers. There are scientific links between Alzheimers and Leukemia as I mention above plus additional facts.

Call or email w/questions. Info is at above links....alway include subject I will recognize.

Best wishes, spread the word and take care!!! Joanne
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a bounty of info - go to clltopics.org
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How are you doing? best wishes to you
Debbie
debbiedoesraw.blogspot.com
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HI -- I found a lot of information on CLLtopics.org.
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Don,t feel to lost there is so much information out there for you to read. I found out a year ago and felt so alone. But read alot and always looked up things on the internet and just found this site so I hope this is what I need to have people with the same illness to talk to.
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Well its been a few months and I am not so newly diagnosed now. Its amazing how fast a person can learn the ins and outs of a disease once they are diagnosed with it. I went to see a CLL specialist in June and he did all the customary tests. We were hoping I would come back mutated but unfortunately I am unmutated with trisomy 12. Not good markers. But each day is a new day and I take what comes. I am extremely exhausted a lot of the time and come to find out, that is a symptom of having this dreaded disease. I really do not know what I would have done without the great people who are on the list at acor which you can find on granny Barbs site CLLtopics.org. They have been so patient with me and have taught me so much in just a few months and I dont think I can ever repay their kindness and generosity of spirit. I continue to see the specialist and have managed to trace my CLL back 4 years to where it started. I try to stay positive and hopeful and there are SO many breakthroughs right now that its hard not to think there may be a cure in the next 10 years. I just hope I live to see it. Just thought I would update since its been a very long time since I have done that... Stay well!
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wow seems like your going thru the ringer for i dont know what the turning point is for treatment what does the hemotologist say have you had a biopsy yet i have been tooken off work already due ti extreme fatigue i will write back more
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Sorry you are unmutated. But as I said last year, one learns to live with what God has given us. Correct information is the passwords to a positive outlook. There is so much research going on and from what I have read, perhaps a breakthrough. But keep the faith and don't panic. Easy to write but sometimes difficult to practice.
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hi.i am meral . i am writing in turkey.i am 15 years old and i am female.it was diagnosed with CLL on last year. and i was Bone Marrow Transplant On March 17th 2008 . I was very lucky my brother was the matching donor.i tryed for win to cancer and i did for now.my family are always with me.and my God protected me. Thanks God for i am great now. i want to forget bad days. it is going to be one year .and i know everyone going to be okay if you are be positive. keep in touch ..