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Old 05-02-2003, 02:15 PM   #1
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Monkeychops HB User
Question Is chronic Leukemia (CLL) hereditary?

Hi,

I know this question has been asked before but I was hoping someone may be able to answer.

My Father is 70 and has terminal CLL. We are all devestated yet I havn't been able to ask anyone the question. I know it is selfish of me to ask when my dad is poorly but I would like to know.

Any ifo gretefully recieved.

Don

 
Old 05-02-2003, 07:35 PM   #2
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adi1209 HB User
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Don,

As long as there's life, there's hope ! Ask your Dad to always have positive thinking and iron willingness.

 
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Old 05-03-2003, 06:15 AM   #3
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For Monkeychops,
CLL need not be terminal. Many people die from other causes. How bad it is depends on which genes are deleted, your symptoms, your general state of health, etc. Ask the oncologist to run a FISH (flourescence in situ hybridization) test. This is a genetic test that will determine prognosis. If your father only has a 13q deletion, he will never die from CLL. Also, there are other markers that will tell more about prognosis. In the flow cytometry test, there is a marker called CD38. If it is negative, that also bodes well for your father's prognosis. CLL is NOT one disease for everyone. It is not "one size fits all." I personally know of several people, myself included, who have had CLL for years, and are still healthy. Mine is "stable" according to Johns Hopkins. I've never had, nor hope to ever have, any "treatment." Chemo kills good cells as well as bad. If your Dad is as bad off as you say, insist he be treated with immunotherapy instead, which targets only the bad cells. This treatment uses monoclonal antibodies, Rituximab is one such drug, to knock out only the CLL cells. CLL is considered to be the "good" leukemia, if there is such a thing, because many people die with it, not of it. Do more research on the internet, plug in chronic lymphocytic leukemia and prognosis, or other choice words, and see the wealth of info that pops up.
Ellen
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Ellen

 
Old 05-03-2003, 09:17 AM   #4
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BobE HB User
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Hi Don & Ellen, I've had CLL about 10 years. To the best of my knowledge it has never caused me any problems. In the 1st few years my white count went up to about 60K. All they do is check me about once a year. I understand it's common to die of old age rather than CLL. BobE

 
Old 05-03-2003, 01:54 PM   #5
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For BobE,
I'm so glad you backed me up that CLL is not a death sentence, and I'm very happy for you that you've been chugging along for 10 years. I'm curious to know how long you have maintained the 60,000 WBC count. And did you have the FISH test and flow cytometry? If you did, can you share some of the findings re your prognosis? Did you ever have night sweats?
Thanks,
Ellen
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Ellen

 
Old 05-04-2003, 02:50 AM   #6
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Hi guys,

Thanks for your info. I think I will make a few calls and see if I can talk to his specialist.

Generally he is well 90% of the time, but he has platelets twice a week and 2-3 bags of blood once a week.

2 years ago we were told he was in a "pre-leukemia" state then just after the new year he was bad and the doctors told us that he had very little time left. This obviously scared us but since then he is doing pretty well, he blood count went down as low as 7(?) and for the past month his levels have been up to 11.3 - apparantly the average mans count is between 12 & 18. so he is pretty much "normal".

Anyway as you say where ther is life there is hope.

Thanks again for all your kind words
Don

 
Old 05-04-2003, 09:07 AM   #7
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Hi Ellen, the white count ramped up to 60K in a couple of years and stayed there until early 1999 when I had throat cancer. It was very advanced and the lead doctor did not think I'd ever leave the hospital. Been out over 4 years now and do almost everything I did before, pretty much no real pblms at all. One of the things I noticed was after the surgery & radiation in 99 was my white count dropped to around 10K. I ask why that would happen and the dr. said he didn't know... No, I haven't had the FISH test, as far as I know at least! The oncologist didn't do the bone marrow biopsy to confirm CLL, they did a $1K blood test instead but I don't think it was FISH. BobE

[This message has been edited by BobE (edited 05-04-2003).]

[This message has been edited by BobE (edited 05-04-2003).]

 
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