Re: Time to First Treatment

[Guest guest]

I have only 13q del. I was diagnosed in 2007 although I had

CLL for at least one year prior. I haven't had any B

symptoms. My white count rose slowly over the years to a

high of 375,000. It was only then that my hgb and platelets

started to drop. I started FR in June and it seems to be

working very well.

Pat

Mod's note from : Just to say thanks in advance

on behalf of the member who asked the question.

[Guest guest]

I am 13q del but at a high percentage .. 85%, which some

researchers consider to be less favorable than 65% or less.

I got the percentage from NIH, where I'm part of their

study: Natural History of Untreated CLL Patients. I was

diagnosed in 2007 and am still watch and wait with a WBC

that varies between 270k and 290k. My plt and Hgb are

drifting down, but not low enough yet to require treatment.

I am probably in the " middle " bucket of Venkat's CLL

characterization. I suggest you check out her two websites

... www.clltopics.com and CLL topics update for lots of good

info.

All the best

Lynn

[Guest guest]

As you will hear from many of us, the time to treat varies

by many factors beyond the gene profile, and even doubling

time which statistically may be the best predictor does not

tell when treatment is needed- only tells the statistics for

others. I believe the CLL docs will say that treatment is

governed my symptoms not disease progression.

You may want to read a recent article " Adverse Prognostic

Features in Chronic Lymphocytic Leukemia " By

Schellhorn Mougalian, MD, O'Brien, MD | July 11, 2011

- it can be found on the Cancernetwork.com at

http://www.cancernetwork.com/leukemia-lymphoma/content/article/10165/1899617

or http://tinyurl.com/3bpkcg2 (free registration required)

On the second page there is a graphic showing survival rates

for the various deletions. While hard to differentiate the

line types, I am fairly certain the 13q line is the one

farthest right wiht 50% survival at 12 years (as opposed to

my trisomy 12 with 0% survival at 12 years).

[This article is the first I read with specific information

on why Rituxan was so effective treating my Trisomy 12]

_______________

Mod's note from : The " Time to First Treatment "

experience of Del 13q ers is what was requested.

[Guest guest]

Hi,

I was diagnosed in Jan 2009 and am on W & W. I have 13q14

deletion. The one thing that troubles me is I have

microscopic blood in my urine and so far my onc, my

urologist and NIH (Natural History study) say it may be

normal in women my age. I am 59 years old.

Several members of this group have said their kidneys are

affected by the CLL. My question is how do you know if

kidneys are affected? What more would I do than consult

the docs I already have?

[Guest guest]

,

I'm one who has kidney involvement - glomerulonephritis.

You should consult with a good nephrologist (kidney doc) who

is familiar with the connection between CLL and the kidneys.

My nephrologist does a CPC, Platelets and Differential,

Complete Metabolic Panel, and a 24 hour urine for protein

and creatinine clearance every three months - more often if

any of the numbers he's looking for are off. My primary and

my urologist both wrote off the blood in my urine and the

fact that my urine protein levels were high. My levels were

so high by the time I got to UCLA that it was thought that I

would need a kidney transplant. A new team of doctors who

treated for the kidney involvement (I was W & W otherwise)

brought the levels into the normal range.

Pat

[Guest guest]

It is not normal to have blood in the urine, but it may be

so low that it is not worth pursuing. It is important to

look as the other parameters (protein, casts, etc.) to know

if it needs to be furthered pursued.

Rick Furman, MD

wrote:

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