Atypical CLL

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Atypical CLL

by texgal911 on Sun Nov 16, 2008 12:00 AM

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Does anyone have information about atypical CLL?  I was initially diagnosed with SLL/CLL.  I went to MD Anderson, and they requested the bone marrow slides from the hospital that did my initial test and by that they diagnosed MCL and CLL.  Later after the results were back from MD Anderson's samples of blood and bone marrow, MCL was ruled out. But I was diagnosed with Atypical CLL.. I have read a lot about CLL and atypical CLL, but have never read a forum where anyone was diagnosed with A/CLL.  I am a 48 yrs old white female. 

I would just like to hear from someone with the same diagnosis..

 

Mary

RE: Atypical CLL

by Rhino7777 on Thu Dec 11, 2008 12:00 AM

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On 11/16/2008 texgal911 wrote:

Does anyone have information about atypical CLL?  I was initially diagnosed with SLL/CLL.  I went to MD Anderson, and they requested the bone marrow slides from the hospital that did my initial test and by that they diagnosed MCL and CLL.  Later after the results were back from MD Anderson's samples of blood and bone marrow, MCL was ruled out. But I was diagnosed with Atypical CLL.. I have read a lot about CLL and atypical CLL, but have never read a forum where anyone was diagnosed with A/CLL.  I am a 48 yrs old white female. 

I would just like to hear from someone with the same diagnosis..

 

Mary


Hi

Im a 50 year old female with A/CLL. If you are anything like me, not only were you devastated by a Cancer diagnoses, but being atypical added to the stress. I've done a lot of research since then. Not to worry, you're just special. When they do flow cytometry and Fish tests they look for specific markers in the blood < CD Markers> that indicate a specific Cancer. In my case , they found not only CD5, CD20 ect... which is indicative of CLL, but FMC7 and CD11c which is indicitive of MCL. They then go further and look for the specific marker of MCL which is a translocation of one of your chromozones ,T11 to 14. If you don't have T11 to 14, you are considered atypical CLL. The atypical diagnoses doesn't mean a heck of a lot. The human body is a weird and wonderful thing, and never does exactly what you'd expect.

Cll is usually a very slow growing cancer, but scary nonetheless. The best site I've ever found for info is called CLL Topics , run by Chaya Venkat.

Don't scare yourself whith some of these doom and gloom websites.CLL is very manageable and treatable and being atypical doesn't change that. Just keep in mind that your immune system is probably compromised and avoid sick people like they're typhoid mary. If you need more info feel free to contact me. I've become a fountain of info on this subject, and hopefully in English , not like some of these doctors ect..

Sincerely

Linda

 

RE: Atypical CLL

by marcic on Sat Mar 28, 2009 12:00 AM

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I am a 48 year old white female from New Hampshire who was diagnosed with CLL last month. I am still in shock and don't know what to do. I have a smart and supporive husband but would like to speak with other women my age and with my diagnosis. Since it has only been one month I have not undergone any treatment and in fact am still seeing docs and looking for treatment options. I have never had chemo before and was very healthy my whole life. I am also interested in anyone who has had a bone marrow transplant because my doctor thinks that I will need one within a year or two. I hope to hear from someone.

RE: Atypical CLL

by sgmstage4 on Sat Mar 28, 2009 12:00 AM

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If you can, get your 2nd opinion at M.D. Anderson in Houston, and then get going on the treatment you choose!!

RE: Atypical CLL

by texgal911 on Sat Mar 28, 2009 12:00 AM

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Linda,

You responded to a message I posted back in Nov.  

Thank you for the info you gave me. I, for some reason, never got back on this site.  I have done endless hours of research on this and know a lot more than I did then. I am CD 38 pos, Trisomy 12...no other deletions.  Doc says I am intermediate risk.  I go back to MD Anderson in 3 weeks for next appt.

I have a node that has been swollen in my neck since a bad throat infection about 6 wks ago. It doesn't hurt, except when I yawn big.  I can really feel it and it is worrisome that it hasn't gone down.  But ...I'm praying that all turns out well.

 Again, thanks for your info.

 Mary

RE: Atypical CLL

by Rhino7777 on Sun Mar 29, 2009 12:00 AM

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Hi Mary

Well you don't sound quite as streesed now. we are very similar, except I've now developed a raging case of rhumatoid arthrits too <sigh> I hope things continue to go well for you.

Linda

RE: Atypical CLL

by Ladyneat on Tue May 31, 2011 04:16 AM

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Hi Mary, I am new to this site and don't know if you are still available, but I would like to hear how you are doing.  I was just diagnosed with atipical CLL too, and seen your post from a few years back... Hope you are doing well. 

Linda

RE: Atypical CLL

by debgw on Tue Mar 27, 2012 08:55 PM

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On May 31, 2011 4:16 AM Ladyneat wrote:

Hi Mary, I am new to this site and don't know if you are still available, but I would like to hear how you are doing.  I was just diagnosed with atipical CLL too, and seen your post from a few years back... Hope you are doing well. 

Linda

I'm new to this site. I'm a 50-yr young female in Pittsburgh. Two years ago, I was diagnosed with SLL although classified as CLL/SLL (lucky us with the 2 for 1 diagnosis). I am also an atypical girl with Trisomy 12.

I'm thinking of getting a second opinion and hoping to get some advice as to where.

My blood counts have steadily gone downhill...now with a WBC of 15.6, HGB 12.7, PLT 137, LYM# 5, and MON# 3.2. Still on watch and wait for the inevitable, although I try to maintain a positive attitude.

My doctor calls me at Stage 1, although he hasn't seen these numbers above obtained at my GP. I have a string of enlarged nodes on both sides of neck and grape-sized lumps under each armpit. I think it's time more scans. Haven't had any in 2 years.

This may sound silly, but I'm wondering if slow the rate of cancer growth by quitting my stressful job and by cutting out all sugar and white flour. A naturopath says to consider an alkaline/acid balanced diet. My oncologist  feels that I should just live life normally without any making any huge changes. I feel that is so disempowering.

Any thoughts? Kill the sugar? Quit the job?

Any recommendations for a 2nd opinion?

Thanks,

Deb

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