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Chronic Lymphocytic Leukemia

Intuit
Posts: 1
Joined: Aug 2004

I've read several messages on this web site posted by fellow CLLers. I hope all of you will check out www.clltopics.org

It will save your life if you find yourself in the hands of an oncologist/hematologist who hasn't kept up with the latest information about this disease.

I've had CLL for a year. Prognostic indicators are CD38+, lymphocyte doubling time less than 12 months, 11q22 deleted. No one within my medical care team knew to look at these factors until I brought it to their attention by reading the CLL Topics Website.

This group is dedicated to education, advocacy and has recently partnered with the Mayo Clinic for an upcoming clinical trial. I've read it before, and now I'm a believer..."The life you save may very well be your own." Be smart. Check it out.

yourkie
Posts: 2
Joined: Mar 2004

i also was told i have CLL last year and am also CD38
positive.51%. I have only had one oppinion. There is no CD22del. on my blood work. What has your dr. done for you? Mine says he may have to treat me in Nov. I dont know anyone with leukemia It wood be nice to talk to some one else to compare notes with.

BGHOPE
Posts: 1
Joined: Apr 2005

HOW ARE YOU DOING? MY HUSBAND WAS JUST DIAGNOSED WITH CLL C38 B CELL LEUKEMIA. 2ND STAGE. WE ARE VERY WORRIED AND ANXIOUS. HE IS 5O YEARS OLD. CT SCAN SHOWED SOME ENLARGEMENT OF SPEEN AND LYMPH NODES IN SPLEEN AREA. WBC 19 TO 34. ALL THIS FOUND ROUTINE BLOOD WORK AND AFTER A BAD FALL. DOC IS NOT TREATING HIM..GOES BACK IN 3 MONTHS...ALL OTHER BLOOD COUNTS ARE GOOD...RBC, HEMOGLOBIN, PLATELETS WE JUST NEED TO TALK WITH SOMEONE WHO IS EXPERIENCING THIS SCARE...READING INFO IS SO CLINICAL AND HARD TO BOOST MORALE. THANKS SO MUCH! WOULD LOVE TO HEAR BACK FROM YOU!

lschindl
Posts: 1
Joined: May 2005

Wow, I could have written the same message. My husband, 50, just found out he has CLL two months ago when he went to the Doctor to have the wax cleaned out of his ears! Did a blood test and further testing and found out that he is in State 2 CLL. He was started on Chemo immediately, his doctor is treating it very agressively, he has chemo five days one week then is off for three weeks. He is working 6 hours a day when not having chemo and it is really doing him in. The scary part is not having the information a person needs to know what is going on. I really wish they would do a half day orientation so you can ask questions and they can tell you what to expect.

dmdjr1
Posts: 5
Joined: Aug 2005

Do you have the hemolitic anemia and if so how are they treating please?

jgrier
Posts: 1
Joined: Sep 2005

Thank you so much Intuit for the reference to CLL Topics. Now we know what testing to request.

My companion, now age 72, was diagnosed with CLL in 1991 after heart attack. Kaiser refused to do needed bypass surgery because of CLL. The approach was watchful waiting and he continued waiting. In 2004 with new insurance and oncologist he had bone marrow biopsy and was diagnosed Stage II. Lymph nodes are somewhat enlarged, spleen is the size of football. Platelets and hemoglobin okay. WBC varying between 75 and 150. With another mild heart attack in August and two arteries 100% occluded, bypass surgery was scheduled but delayed because of spiking temperatures, wbc 190, pneumonia. Cat Scan (first one) showed abnormality of spleen. Got caught between doctors. Now oncologist says go ahead with bypass (no lymphoma at spleen) and do before treatment. Surgeon agreed after much discussion weighing benefits of delay. Finally said would rather do before immune system compromised by chemo. Cardiologist wants to wait until after treatment. Everyone passing buck back to us--CLL very slow/heart damage already done and no emergency. Very frustrating. After reading up now, it seems oncologist is up to speed on latest chemo, but we will request FISH test and further discussion. Now back to cardiologist to get heart surgery on track before chemo. Has anyone else run into this bypass vs. CLL problem?

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