CNS study- includes horrible survival stats |
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Netterz 
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Joined: Oct 05 2007 Location: United States Status: Offline Points: 405 |
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 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.
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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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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 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
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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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Dino
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Joined: Jan 22 2009 Location: United States Status: Offline Points: 7 |
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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!
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I will Survive!
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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 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.
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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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Netterz
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Joined: Oct 05 2007 Location: United States Status: Offline Points: 405 |
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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!!!
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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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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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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.  Edited by krisa - Jan 23 2009 at 6:16am |
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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 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. Edited by BrendaF - Jan 23 2009 at 8:49am |
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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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peach
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Joined: Jun 22 2007 Location: Georgia Status: Offline Points: 112 |
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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
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Dx 5/07 TNBC
IDC Stg.2, Gr.2, Sentinel node 0/1 BRCA- Lumpectomy,Chemo(AC-T DD)Rads |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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