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Old 09-21-2006, 11:56 AM   #1
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gemmax HB User
Smile looking for CLL patients under 40

My fiance was recently diagnosed with stage 0/1 CLL. he is 34 years old. we have had no luck in finding other people with CLL that are around this age as it is so rare to be this young and have CLL.
I would love to meet a younger caregiver, and my fiance would really like to be put in touch with a CLL patient in his age group.
looking forward to it.

 
Old 10-26-2006, 01:21 PM   #2
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courtenaynt HB User
Re: looking for CLL patients under 40

I am 29 and have CLL. They had me on oral Leukeran, and my counts are okay now. I am in Stage 0/1, too.

I don't get on this site very often these days, but will try to check as there are very few people our age with it. My doctors are optimistic that it may be like this (dormant for most purposes) for a long time.

I am still a little in denial (okay, a lot).

What treatment is your fiance doing right now? Does he have symptoms? I just get tired and bruise a bit, but mostly have been feeling okay.

Last edited by courtenaynt; 10-26-2006 at 01:35 PM.

 
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Old 10-29-2006, 06:01 PM   #3
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wonderingmom HB User
Re: looking for CLL patients under 40

My mom was diagnosed with CLL almost 20 years ago when she was 40. She started out with oral chemo and over the years her treatment has had to get more aggressive. The last round of chemo she went through (about 2 years ago) she didn't lose all of her hair, but it did thin. They gave her plenty of medications that kept her from getting sick but she was very tired and sore and they took her white count down to nothing. It stayed in normal range for over a year after that, but now it is out of that range and slowly climbing again. She goes monthy for IVIG with really is a wonderful thing. We are so thankful that although CLL is not fun, she has done so well for so long.

 
Old 10-31-2006, 02:51 PM   #4
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Re: looking for CLL patients under 40

I just found out today my husband has cll. He is 39. I am in shock. We go to the doctor on Friday to find out more and what stage he is in. When someone is this young, is it most likely stage 0? Any information you have will be helpful. He had been complaining of pain in his joints (knees, ankles, feet and wrists). They were treating him for arthritis when we found out the results from the blood test. Is it possible to misdiagnose cll?

 
Old 11-01-2006, 09:28 AM   #5
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beckyb46 HB User
Re: looking for CLL patients under 40

I remember being 39. I am 50 . I have CLL As long as his lab counts are okay they will probably do a watch and wait thing. Every doctor is different about how high the WBC's can go. Then I think mainly they watch for lymph nose involvement before they start any kind of treatment.
People can stay in the W&W stage for many years.
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Old 11-07-2006, 11:17 AM   #6
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gemmax HB User
Re: looking for CLL patients under 40

Hi courtenaynt, I totally understand the whole denial scenareo. myself and my fiance are both still hoping that maybe there was some kind of huge mistake...hummmmm!
He isn't having any treatment at the moment which is really frustrating because we feel so helpless. he is in pretty good health though, except for being pretty tired most of the time and having swollen lymph nodes in his neck.
would you be able to give me some more detail regarding the medication you were on and what your counts were at when they put you on it. its tough for us to know he has leukemia but no-one will treat him.
thanks for getting in touch.
take care
G

 
Old 11-07-2006, 11:25 AM   #7
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gemmax HB User
Re: looking for CLL patients under 40

Hi Michelleono,
I;m so sorry to hear about your husbands diagnosis. I totally understand how you are feeling.
There is some good news though. CLL can be very chronic. it can remain dormant for years before they get sick. it can be frustrating as you have to live with such uncertainty but it also gives you time to get ready emotionally for tough times ahead.
let us know how the doctors appintment went and keep in touch. Maybe we can help each other through this.
take care
G

 
Old 11-09-2006, 05:37 PM   #8
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Re: looking for CLL patients under 40

Becky,

I noticed you live in Baltimore. We live in Northern Virginia. What Doctor do you see? Anyone you recommend?

 
Old 11-09-2006, 05:44 PM   #9
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Re: looking for CLL patients under 40

HI Gemmax,

I am still trying to figure out this message board and am not sure how to reply to you personally. Thanks for the kind words. We met with the doctor last week and my husband had a cat scan this week. The cat scan was clean which is good news - stage 0. We are waiting for the results from the FISH test. We also have a 2nd opinion appointment at the end of the month. My husband looks so healthy...hard to believe he really has this. I would really like to keep in touch with you. Seems like we are going thru the same thing right now. Look forward to your reply. Smile.

Michelle

 
Old 11-10-2006, 05:22 AM   #10
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beckyb46 HB User
Re: looking for CLL patients under 40

I go to ST Joseph Hospital and I see A group call Dowens And Huesling. Dr Downs does alot of CLL
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