CNS study- includes horrible survival stats |
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alene 
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Joined: Nov 11 2008 Location: Seattle, WA Status: Offline Points: 89 |
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 Topic: CNS study- includes horrible survival statsPosted: Jan 22 2009 at 9:54am |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Jan 22 2009 at 10:19am |
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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
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Joined: Nov 11 2008 Location: Seattle, WA Status: Offline Points: 89 |
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Posted: Jan 22 2009 at 10:30am |
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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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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Jan 22 2009 at 10:56am |
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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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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jan 22 2009 at 11:38am |
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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
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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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BrendaF
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Joined: Dec 07 2007 Location: United States Status: Offline Points: 401 |
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Posted: Jan 22 2009 at 11:41am |
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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.
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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
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Joined: Aug 20 2008 Location: Colorado Status: Offline Points: 153 |
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Posted: Jan 22 2009 at 12:24pm |
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what does CNS stand for? Did not like the sound of this ...
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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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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Jan 22 2009 at 12:30pm |
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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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sibu
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Posted: Jan 22 2009 at 1:02pm |
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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 |
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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
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Joined: Nov 11 2008 Location: Seattle, WA Status: Offline Points: 89 |
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Posted: Jan 22 2009 at 1:05pm |
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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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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Jan 22 2009 at 1:20pm |
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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
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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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BrendaF
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Posted: Jan 22 2009 at 1:27pm |
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Caryn, you must be feeling better - I haven't heard you sounding so spunky in a month!
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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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myjourney
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Joined: Jul 06 2008 Location: Seattle, Washington Status: Offline Points: 211 |
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Posted: Jan 22 2009 at 1:39pm |
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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.
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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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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Jan 22 2009 at 1:45pm |
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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
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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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BrendaF
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Posted: Jan 22 2009 at 1:52pm |
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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.
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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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krisa
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Posted: Jan 22 2009 at 2:05pm |
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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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myjourney
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Posted: Jan 22 2009 at 2:46pm |
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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 |
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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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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Jan 22 2009 at 3:49pm |
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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
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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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becca
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Posted: Jan 22 2009 at 5:14pm |
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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
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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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Netterz
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Posted: Jan 22 2009 at 5:33pm |
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CNS = Central Nervous System Becca
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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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