CNS study- includes horrible survival stats
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Topic: CNS study- includes horrible survival stats
Posted By: alene
Subject: CNS study- includes horrible survival stats
Date Posted: Jan 22 2009 at 9:54am
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http://www.oncologystat.com/journals/journal_scans/Sites_of_Distant_Recurrence_and_Clinical_Outcomes_in_Patients_With_Metastatic_Triple_Negative_Breast_Cancer.html -
http://www.oncologystat.com/journals/journal_scans/Sites_of_Distant_Recurrence_and_Clinical_Outcomes_in_Patients_With_Metastatic_Triple_Negative_Breast_Cancer.html
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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Replies:
Posted By: mainsailset
Date 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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Posted By: alene
Date 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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Posted By: dmwolf
Date 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 |
Posted By: Nancy
Date 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 ------------- 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 |
Posted By: BrendaF
Date 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.
------------- 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 |
Posted By: becca
Date Posted: Jan 22 2009 at 12:24pm
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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 |
Posted By: mainsailset
Date 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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Posted By: sibu
Date 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 ------------- 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 |
Posted By: alene
Date 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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Posted By: CarynRose
Date 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 ------------- 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 |
Posted By: BrendaF
Date 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! ------------- 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 |
Posted By: myjourney
Date 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. ------------- 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. |
Posted By: CarynRose
Date 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 ------------- 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 |
Posted By: BrendaF
Date 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. ------------- 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 |
Posted By: krisa
Date 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? |
Posted By: myjourney
Date 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!! ------------- 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. |
Posted By: CarynRose
Date 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 ------------- 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 |
Posted By: becca
Date 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 ------------- 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 |
Posted By: Netterz
Date Posted: Jan 22 2009 at 5:33pm
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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 |
Posted By: Netterz
Date Posted: Jan 22 2009 at 5:43pm
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Hrmmmmmm,
I guess what I would like to know, is that we ARE the women who have it.. yet no one on here, has mentioned being in any study like this. I dont think that this article is any way NEAR accurate, with out atleast ONE of us, being in such a study. I would think that with the amount of women on here that DO already have mets, and most of those are CNS mets...how can this be accurate?
We have family members that have came back and posted upon several members passing, and I have never read from any of them, that they were involved in such a study either. So how can a group os SO MANY women, who ALL have this disease, or have family members with it, have NEVER mentioned this.
I surely wish that some of these incredible minds who find the need to post such findings for the oncology world to read, would get there butts on here, and let them explain to US.... the ones who are living with it, how they come up with this kinda crap. ESPECIALLY since we have so many that have far outlived there findings. ------------- 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 |
Posted By: Nancy
Date Posted: Jan 22 2009 at 5:48pm
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Netterz,
At the bottom of that article is a place to contact them. Why don't you send them an email and ask the very questions you were pointing to.
If you don't I will.
Hugs,
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 |
Posted By: Dino
Date Posted: Jan 22 2009 at 7:37pm
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You know this does sound horrible. But you have to remember that they do not give all the information you may need to know to better understand these patients odds. Age? Other illness? etc. Also, think about the time span. At present, I think they have found better ways to cure this type of cancer. With each day, month, year that passes they learn new things and there are new medications or medications mixed differently to help TNBC patients.
You also have to remember that EACH and EVERYONE of us is SPECIAL and we will all handle medications differently, we will even feel differently about our PERSONAL BATTLE with this. I think that first and foremost you must have FAITH. You must try to remain Positive. You must remain open to the idea that things WILL get better. Many times if we simply BELIEVE....we will survive!
Also, don't read too much stuff cause it will get you to thinking negative. : )
Face Forward and DO NOT BE AFRAID! ------------- I will Survive! |
Posted By: CarynRose
Date Posted: Jan 22 2009 at 8:04pm
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YOU GO DINO!!
And there actually is a new chemo for CNS mets called DepoCyt which is administered less often and apparently is more effective than methotrexate with far less side effects.
That is just one of the new techniques they are using.
We are the trailblazers.
We will be the first chronic TNBCers. We will be the first cures. ------------- 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 |
Posted By: Netterz
Date Posted: Jan 22 2009 at 8:18pm
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I read the article again. So then I decide to do a search on that site for Tneg. I read thru several articles they have posted in the past, and every stinking one had almost the very same prognosis, just mixed up the presentation a bit here and there. I looked closely at the dates they were uploaded.
I once again, wonder where in the flippin Onc world get there info from, because obviously there are women here on this site, DEVOTED to women and there loved ones that post non stop, most of us daily, yet no one has heard of anything like this. I think we should ALL email them, ask themm where in the H3LL do they get there info!!! ------------- 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 |
Posted By: krisa
Date Posted: Jan 23 2009 at 6:16am
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on the No Surrender site, Constantine writes that if you want to find a study that says "A is A", you can find it. Or a study that says "A is B", you can find it. or "A is not A". etc. Be careful and cautious when you read a study.  |
Posted By: BrendaF
Date Posted: Jan 23 2009 at 8:47am
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Krisa,
Absolutely!
And on the other hand, how is worrying about what is in this study going to help anything? Is it going to change how you approach living with cancer?
IMO, we live every day as if it's the first of many more to come, making plans for vacations and gardens; and we live every day as though it's our last and we have to squeeze all the love and good times into it that we can. Knowing I'm terminal doesn't change that - if anything, it makes my appreciation and joy in life more intense.
Whether I live six months or six years, I'm planning on enjoying it and not worrying about what some study said about some other women that were treated several years ago. ------------- 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 |
Posted By: peach
Date Posted: Jan 23 2009 at 9:49am
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Thanks,
You guys are the best, I must admit I was down in the dumps after reading that article. I've pretty much got use to the doom and gloom I read, but sometimes it gets to me.
I don't want anyone to paint me a pretty picture either I want to know what I'm dealing with. Thanks everyone it's good to see your perspective, I think the ladies here are more informed than most oncologist.
Pat ------------- Dx 5/07 TNBC IDC Stg.2, Gr.2, Sentinel node 0/1 BRCA- Lumpectomy,Chemo(AC-T DD)Rads |
Posted By: trip2
Date Posted: Jan 26 2009 at 10:48am
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Peach,
Reading studies or articles such as this one can cause doom and gloom, it's natural. Then you get to thinking about what it is you are reading and start sorting thru it like this thread has done and put it into perspective.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |