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CNS study- includes horrible survival stats

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alene View Drop Down
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    Posted: Jan 22 2009 at 9:54am
 
 
 
 
Anyone else see this study...It's purpose is CNS progression in tnbc...but what is shocking is the overall study stats...
 
116 patients...34.1 months
104 dead
12 still alive...
 
Am I reading this wrong...or is this the worst survival stats ever...
 
Input is appreciated...
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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 10:19am
After first read where I wanted to throw myself off the first cliff, what I'm getting is the importance of research that diminishes the opportunity for the beast to spread. Heartening are the articles offered on this site that show the great advances (and more once stem cell research is allowed to advance via Obama's directives) of vaccines and proteins identified that will snuff the abilities of the cancer to aggressively spread.
 
For all the women who write here about waiting for confirmation, or believe their onc's who say wait six months for another checkup, take a look at the time allotments in the article and ask yourself if you want to give your cancer that head start on your life.
 
 
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alene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 10:30am
Where was that cliff?
 
I was thinking of jumping off myself...when I read this study...
 
I know what you mean about the waiting game...
 
I'm in radiation now...my next onc checkup is not for another 3 months...when I asked him the other day...how we'll know if I'm clear...you know those infamous blood markers...he said that my markers were always negative...
A 10cm tumour...5/13 nodes...subclavicle node - not operable...still blood markers are negative...great...
 
So I don't get the waiting game either...how will we know...if it's back...or if it's gone...beats the heck out of me...
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 10:56am
Not that this helps much for those of us who've already crossed that threshold, but the survival statistics only apply to women with metastatic disease.  For any woman who hasn't yet hit that wall, there's still a reasonable chance for a long life.  And, of course, none of us is a statistic.  We can fall on the skinny tails of the distribution.

Love,
Denise
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 11:38am
Alene,
 
I will post this link on the TNBC News forum. I just got sick when I read this. It does apply to those with mets...right?
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 11:41am
Well, being metastatic, and feeling pretty good - even with a recent brain met....   I've already had my 13 plus months since diagnosis of mets.  I'm currently stable and not on chemo, after CT scans showed no progression since November - with no chemo since last May.  I know it doesn't look good for us with brain mets - the average life span, they say, is six months from brain mets dx.  But I just don't believe I'll be gone in four months. 
 
 
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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becca View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote becca Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 12:24pm
what does CNS stand for?  Did not like the sound of this ...
Age58 DX 12/07
Grand Junction, Colorado
Lumpectomy 1/08/08
Stage IIIA grade3
5/19 nodes
chemo 5/08 radiation 7/08
clear pet 9/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 12:30pm
My last visit with onc I asked him to look forward with me where we could review what options I had beyond the double masc & radiation; to look at what studies, etc might be available. He's good but I know it will be up to me to find what's out there that I might be able to join up with.
 
How about if we start a new thread where we compile 'found' options for us to investigate to prevent recurrence (I ain't PollyAnna but I ain't a quitter either).
 
Brenda: forget the 'they say', you aren't going anywhere, spring is coming.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:02pm
Well I know for sure Brenda and Caryn will be leading that 12 in the survivors' group, showing everyone how it's done!


CNS=Central Nervous System



Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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alene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:05pm
Becca:
CNS = Central Nervous System
IE Brain Mets - Spinal Nerves etc.  I think...
 
The upside of the study regarding CNS was that it didn't often happen to us...by itself...it appears after other organs have mets...
 
In other words...Triple Negatives don't all of the sudden get brain cancer...We usually get Lung or Liver...then brain...
 
That's my take...I could be wrong :-)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:20pm
They are saying now that they are doing such a good job of getting rid of mets elsewhere that the suckers seed beyond the blood/brain barrier.  Getting to it there is harder, but it's not impossible. 
 
Whatever stats you read today are OLD.  Brenda, CalGal, and I are on the leading edge of this stuff, out on the skinny branches.
 
Alene,  there are a number of mets that fall under CNS mets.  Brain mets, Spinal mets, leptomeningeal mets, etc.  Treatment depends on which kind you have.  Brenda actually had a lesion and was able to have it treated with a gamma knife.  Mine had no lesions, just goop on the leptomeningeal lining - so we had to do chemo and are now doing radiation.  So far, so good.
 
I know of a couple of women who had the same thing I have about two years ago and they are NED now. 
 
We are NOT stats.  We are human beings with spirit and expert docs who are committed to bringing us back to normal.  Dear G-d, hear our prayers to bring us back to normal!!
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:27pm
Caryn, you must be feeling better - I haven't heard you sounding so spunky in a month!
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote myjourney Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:39pm
And remember, we are either 0 or 100. We are not stats, and we must live our lives like this, otherwise there is no normalcy.
33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:45pm
Brenda,
 
I don't know how much better I feel, but I'll be darned if I'm going to let an article about stats take away my hope.
 
Here I am thinking, hmmmmmm CNS mets doesn't have to be a death sentence if you take it one step at a time and I see this article in my face.  Threw me for a loop for a bit, but I won't let it stop me. 
 
Remember, we're going to be CHRONIC until they find the cure and then we'll be CURED.
 
Love,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 1:52pm
Caryn, are you taking boswellia?  Edge has been talking about it a bit on NoSurrender's site, and Cleveland Clinic and others are studying it to use for swelling (avoiding steroids) and for prevention of mets.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 2:05pm
i was just looking up information on boswellia...a friend has told me that inflammation in the body, in some cases,  can be a precursor to cancer..have you heard that?

Edited by krisa - Jan 22 2009 at 2:08pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote myjourney Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 2:46pm
That makes sense. If your body is fighting an inflammatory response its going to be in high gear of trying to calm itself down. And all it takes is one cell to go haywire, and bam..cancer.
My friend at work just got this wild, viral cancer. His doc said he could've picked it up off a door knob. It went to his tonsil, and he got throat cancer. It was HPV, that went into cancer, in less than two months. Cancer is so crazy!!

Edited by myjourney - Jan 22 2009 at 2:48pm
33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 3:49pm
At Edge's suggestion, I am taking Boswellia -- around 1920 m per day.   I'm thinking of picking up on more of the other things he suggests too.
 
Much love to you.
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote becca Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 5:14pm
thanks everyone...I am not up on all this ..sometimes I read these things and have no idea what I just read...but I am learning  , thanks to all of you ..
 
HUGS ,
Becca
Age58 DX 12/07
Grand Junction, Colorado
Lumpectomy 1/08/08
Stage IIIA grade3
5/19 nodes
chemo 5/08 radiation 7/08
clear pet 9/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2009 at 5:33pm
CNS = Central Nervous System Becca
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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