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chronic lymphocytic leukemai

sonia0125000
Posts: 3
Joined: Sep 2008

I was diagnosed with chronic lymphocytic leukemia.

I want to meet people with the same condition to share whatever regarding the condition.

My doctor advise is to wait and see. Monthly blood test is to be conducted.

Any one there

nancyh1314
Posts: 11
Joined: Sep 2008

Hi Sonia,

I was diagnosed with CLL in Sept 2006. I had a lumpectomy for breast cancer and the sentinel lymph node was biopsied to determine if the breast cancer had spread. Ironically, it was negative for breast cancer but positive for CLL. I have been under the care of a Hemotologist for the last 2 years but I'm still symptom-free. How do you feel? How were you diagnosed?

sonia0125000
Posts: 3
Joined: Sep 2008

Bone marrow biopsy was conducted.
CBC latest my only my platelets is on the normal side.
Not feeling well this days.
Are you working?

nancyh1314
Posts: 11
Joined: Sep 2008

Yes, I am working. My hematologist expected that I would have developed symptoms by now due to the fact that I also have 17p chromosome deletion but nothing so far. I will undergo CT scans in early Dec to have a better look at internal organs. My dr also recommended a website 'www.clltopics.org' that has lots of good info. It was created by a woman who is non-medical (her husband 'Harvey' had the disease) but the info is very valid and lots of it is very technical so it's hard to absorb it all. But I figure I can digest pieces of it as I go along and have further questions.

Were you tested because you were showing symptoms? Are you able to work?

cll123
Posts: 2
Joined: Mar 2010

nancyh -- Thank you very much for the site in your post ('www.clltopics.org'). This site has been the most informative, and well written which allows essentially any layperson to understand many aspects of CLL. It sure helped me see what was important regarding the blood work, and it sure is not the WBC as many folks think is important.

Again, thanks for the site, and good luck with your CLL. PS - i recommend that you go to the site and re-read the information that is lined out by the chemist who explains how and why CLL works. Essentially 90% of the questions i have seen posted on CLL chat sites are answerred by reading the chemist's site you referenced. The chemist knows much more then most Drs., and she sure lays out the information better then most doctors do. Regards, and thanks again.

PS2 -- get copies of your blood work and put the data on an Excel spread sheet, then it starts to make sense. The primary info you want to follow is the ALC, which is very clearly explained on the site ( http://updates.clltopics.org/1562-complete-blood-count-lymphocytes ). Good luck.

sonia0125000
Posts: 3
Joined: Sep 2008

I'm in the hospital right now. very aggressive daw and CLL ko. undergoing chemo. just finished the 2nd. session. today will be the third session. my renal failure na raw.
Thanks for being here. This is the husband. Please pray for her recovery.

nancyh1314
Posts: 11
Joined: Sep 2008

I am so sorry about the turn of events for both of you. I will pray for both of you and your loved ones that you find the strength to fight and that your medical caregivers are guided by God to find a path for your recovery. Please know that you are in my heart and in my prayers.

Nancy

60Patrick's picture
60Patrick
Posts: 6
Joined: Jul 2007

Just thought I'd check in to see how Sonia is doing. Please let me know. I also have CLL

wendelsp
Posts: 1
Joined: Jun 2009

MY BLOOD COUNT HAS BEEN UP & DOWN FOR 2 YEARS. I WAS SENT TO A HEMOTOLOGIST IN THE BEGINNING, BUT I REALLY DID NOT ASK ANY QUESTIONS AND WAS TOLD I WAS OK. MY INTERNIST TOLD ME IT COULD BE FROM AN INFECTION OR NERVES. IN APRIL FOR ROUTINE BLOOD WORK MY COUNT WAS 13.3-19.2 & 18.3. MY DOCTOR SUSPECTED IT AND TOLD ME THE FIRST OF THIS YEAR. MY COUNT WAS DOWN TO 13.6. WHEN I ASKED THE SPECIALIST IF I HAD CLL, HE TOLD ME "NO,NO,NO". I AM TO SEE HIM AGAIN IN 2 MONTHS. I AM REALLY CONFUSED. SO HOW WERE YOU DIAGNOSED.

Marie2
Posts: 1
Joined: Jun 2009

I found out I had CLL when my glands were so swolen that I had a double chin. Evidently I had this for some 10 years. I was told I was in stage 4 which means that I needed treatment. I have now had 4 cycles of chemo. The way they know if you have CLL is your white blood cells multiply crazily. That is why I had the double chin. My count was 164,000 normal is 4,500-10,000. If left unchecked the white cells take over in the bone marrow where the red cells should be made.

cll123
Posts: 2
Joined: Mar 2010

If you have CLL there is a specific test you take and it verifies if you have CLL or not. It is a CBC Flow Cytometry test. If you have CLL, the test will verify it. WBC is just a symptom ---- it doesnt confirm if you have CLL, but the Flwo Cytomerty Test will confirm if someone has CLL. Good luck.

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