Re: Time for TX (was: Recent diagnosis)

[Guest guest]

I relied on the NCI (National Cancer Institute)

guidelines for tx. of my cll: http://ncicll.com/

Ellen

[Guest guest]

Hi Carolyn,

I am very interested in your comments about being treated to

early. I have many of the same symptoms you have....

Diagnosed in 2008, blood work continues to look relatively

stable but I am sooooooo tired all the time. Occassionally

have some shortness of breathe and have always had extreme

flu like aches and pains since being diagnosed.

Fatigue is to the point I cannot handle my daily activities

like I once could.

I am going to M.D. as well and have not had

treatments but wonder if maybe I should now. They are

evaluating, etc. I am just curious about why you felt it

was too early? did it help your fatigue? I would willingly

go through the treatments if I could gain some productive

waking hours each day.

Thanks for your thoughts or anyone else's. I have been

doing pretty good since diagnosis but I fear things may be

changing. The blood counts don't indicate it but my body

sure as heck does.

Joyce

Carolyn wrote:

/message/15763

[Guest guest]

Hi Ellen - thank you for posting this comprehensive overview

of NCI guidelines for diagnosis & treatment of CLL

(published in Blood June 15, 1996).

My question is - since this was published 15 years ago and

so many new developments have since occurred in our

knowledge about CLL, how much of this is still valid. Has

there been any subsequent revisions since 1996?

I thought someone on our list might know.

Thank you - Patti

Mod's note from : I added the link to Ellen's message,

as she provided no link. It was the most recent one I could

find. If there's something more recent, please advise.

> I relied on the NCI (National Cancer Institute)

> guidelines for tx. of my cll: http://ncicll.com/

[Guest guest]

Hi Caroline

Perhaps you should investigate other causes for your

fatigue. I am 80 years old, work part time as an attorney,

diagnosed as CLL about 15 months ago, my platelets are

between 21 - 47. Red cells less than 3, white cells were

over 40,000 now about 6,000, hemoglob never above 9.2 and

yet, although I cannot do what I was previously able to do,

I do not feel as low as you reported. There are several

autoimmune conditions and syndromes that result in extreme

fatigue. The treatments for these are different than for CLL.

Good luck

Mel

[Guest guest]

Patti and -

There were new guidelines published in 2008 in BLOOD, 15

JUNE 2008 VOLUME 111, NUMBER 12 I have a pdf copy that I

will try to attach, but maybe or another moderator can

find a link to it.

Marcia

Mod's note from : No attachments are possible but I

managed to find it with the clues you provided, thanks!

http://bloodjournal.hematologylibrary.org/content/111/12/5446.full.pdf+html

or http://tinyurl.com/3ata9am

FYI, I'm the only moderator.

Patti wrote:

> My question is - since this was published 15 years ago and

> so many new developments have since occurred in our

> knowledge about CLL, how much of this is still valid. Has

> there been any subsequent revisions since 1996?

[Guest guest]

IMHO treatment too soon can make things worse. The only

thing my Dr. said to me as he saw my platelets falling is

that we had to watch them. My WBC and ALC was never very

high and I had all the indications of an indolent CLL.

However, as the months passed my platelets fell to the mid

40's and lab freaked over this.

I went to a CLL specialist in CA. and by the time I got back

I had other issues and my platelets fell to 16. Because I

had to have a spinal tap I had platelet and blood

transfusions. Hgb had also fallen to 8+.

Now I am just waiting for my treatment date.. Originally

my Dr. wanted to give me chemo (bendamustine) which would

have sent my already poor platelets plummeting. So waiting is

sometimes good.

Really have to take into consideration, everything.