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Say NO to Chemo?

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Poll Question: What have you tried outside of traditional treatment?
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MsBliss View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2011 at 1:07pm
Bump (Hey Colleen!) lol.....
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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colleen View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2011 at 3:42pm
Hola Ms Bliss.Smile
Colleen
DIAX 4/08 age 49 Stage 1C, 1.8 cm, IDC, Grade 3 Lumpect 5/08
rads 33 end 8/08
no lymph node 0/4 BRCA 1/2neg
no chemo
< stress
> nutrition
9.11 N.E.D
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2011 at 5:02pm
A friend of mine did some research and found a gene signature to distinguish those TNs who need chemo from those who don't.    Kind of like oncotypeDX/mammaprint but for TN's.  Unfortunately there's no product yet, but there is a paper and if you paid to have your tissue analyzed with a gene expression microarray I might know what you need to do to run the signature on it (pm me).

Breast Cancer Res. 2010 Oct 14;12(5):R85. [Epub ahead of print]

A multigene predictor of metastatic outcome in early stage hormone receptor-negative and triple-negative breast cancer.

Source

Buck Institute for Age Research, 8001 Redwood Boulevard, Novato, CA 94945, USA. cbenz@buckinstitute.org.

Abstract

ABSTRACT:

INTRODUCTION:

Various multigene predictors of breast cancer clinical outcome have been commercialized, but proved to be prognostic only for hormone receptor (HR) subsets overexpressing estrogen or progesterone receptors. Hormone receptor negative (HRneg) breast cancers, particularly those lacking HER2/ErbB2 overexpression and known as triple-negative (Tneg) cases, are heterogeneous and generally aggressive breast cancer subsets in need of prognostic subclassification, since most early stage HRneg and Tneg breast cancer patients are cured with conservative treatment yet invariably receive aggressive adjuvant chemotherapy.

METHODS:

An unbiased search for genes predictive of distant metastatic relapse was undertaken using a training cohort of 199 node-negative, adjuvant treatment naïve HRneg (including 154 Tneg) breast cancer cases curated from three public microarray datasets. Prognostic gene candidates were subsequently validated using a different cohort of 75 node-negative, adjuvant naïve HRneg cases curated from three additional datasets. The HRneg/Tneg gene signature was prognostically compared with eight other previously reported gene signatures, and evaluated for cancer network associations by two commercial pathway analysis programs.

RESULTS:

A novel set of 14 prognostic gene candidates was identified as outcome predictors: CXCL13, CLIC5, RGS4, RPS28, RFX7, EXOC7, HAPLN1, ZNF3, SSX3, HRBL, PRRG3, ABO, PRTN3, MATN1. A composite HRneg/Tneg gene signature index proved more accurate than any individual candidate gene or other reported multigene predictors in identifying cases likely to remain free of metastatic relapse. Significant positive correlations between the HRneg/Tneg index and three independent immune-related signatures (STAT1, IFN, and IR) were observed, as were consistent negative associations between the three immune-related signatures and five other proliferation module-containing signatures (MS-14, ONCO-RS, GGI, CSR/wound and NKI-70). Network analysis identified 8 genes within the HRneg/Tneg signature as being functionally linked to immune/inflammatory chemokine regulation.

CONCLUSIONS:

A multigene HRneg/Tneg signature linked to immune/inflammatory cytokine regulation was identified from pooled expression microarray data and shown to be superior to other reported gene signatures in predicting the metastatic outcome of early stage and conservatively managed HRneg and Tneg breast cancer. Further validation of this prognostic signature may lead to new therapeutic insights and spare many newly diagnosed breast cancer patients the need for aggressive adjuvant chemotherapy.

PMID:
20946665
[PubMed - as supplied by publisher]

PMCID: PMC3096978

Free PMC Article

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2011 at 9:07pm
Denise, this is absolutely brilliant.  I will def be following up on this one.....thank you for the heads up!
Bliss
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2011 at 9:09pm
Colleen,
Did you ever find out about your tumor pathology with regard to lymphocytes, syntial sheeting, or medullary features?
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote frenchandirish Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2012 at 12:36am
I was diagnosed with TNBC July 7, 2011.  I underwent a lumpectomy to remove four tumors, completed two cycles of A/C, and then said enough!  I have since then been doing 100% alternative treatments, primarily Ayurveda.  I am experiencing much success.

Please feel free to read more about my journey at; http://christinasrealtalk.blogspot.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2012 at 12:26am
Denise,

Somehow, I completely missed this last fall. Do you know of any further follow-up to it? It is very intriguing! I had neoadjuvant chemo and am all done, so the point is kinda moot, but the thought that a test like that could give you an indicator of if you might recur or not is amazing and terrifying all at the same time.

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2012 at 7:58pm
Dear frenchandirish.....enjoyed your blog! 

Did you see/read your own pathology report?  There is sometimes info that can help put your worries at ease.  You mention tnbc, but not size, staging, or the dozens of other markers or lymphvascular conditions surrounding the tumors that are sometimes in path reports that can be helpful in determining what to add or subtract from protocols...especially ayurvedic therapies which are systemic in nature.

.....from your blog, you repeatedly state that most women with tnbc do not survive past five years.  Are you sure you meant to say this?  Perhaps your oncologist or someone has over-stated the risks and recurrence rates.  I hope you have not be needlessly terrified. 

Lately for some reason, I am always in a stressed out state of being.  Your mention of meditation and massage, along with other life style choices have struck a chord with me.  I think I may take a page from your blog and pursue the addition of some additional therapeutic modalities too.

All my best,
Bliss
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote artsygirl Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2012 at 8:54pm

I really don't understand enough about what you have in order to even give advice. We all have to make our own decisions, whether they are right or wrong. You are in control of that.  Just talk to your onco further about the chemo and make your decision based on how you feel.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote alsquest Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 10:54am
I need your help. My wife and high-school sweetheart was diagnosed in August. Surgery in October revealed TN, 2.8cm, lymph nodes are clear, BRACA negative, margins clear. She is mentally devastated, but physically very healthy. Her surgeon recommended radiation and she is fine with that. Her main fear is chemo. She worries about the side effects and long-term issues with chemo. We had an "ok" diet before but have switched to a more low-fat mainly vegetarian diet and she is working out 6-days a week. Our GP, very good doctor that we have known for 10 years,  says to do radiation and keep a close eye. My brother is a GP and he said the same thing. But, every chemo doctor and most radiation doctors we see says she should get chemo because of TN and age-45. 

I am so new to this and lost with all the information out there but each case being so unique. I was hoping to find others on this site in similar circumstances that opted not to do chemo and get advice. Sorry for the long post and thanks in advance for your help. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 11:37am
For a TN tumor 2.8 cm I think all qualified oncologists knowledgeable with TN would recommend chemo. If I had a doctor telling me I didn't need it, I'd run as fast as I could to a better doctor. Sorry to be blunt but TNBC is aggressive and bad advice can hurt your wife's chances. Please seek a second opinion quickly. If you tell us where you live we could give you some recommendations of oncologists savvy in TNBC.

Donna



Edited by 123Donna - Nov 11 2012 at 1:04pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote frenchandirish Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 12:22pm
Post lumpectomy, I underwent two rounds of chemotherapy and then STOPPED. I have been doing 100% alternative since then and am doing really well. I was diagnosed July 7, 2011. I encourage everyone to do their own research and choose a treatment path that works for them.
Http://christinasrealtalk.blogspot.com
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alsquest Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 1:20pm
Thank you for the quick replies. I am still learning about this. I read dmwolf's post above and am trying to find the data in the gene test that will tell if my wife's TN needs chemo. 

Frenchandirish-a doctor just told us last week that 80-% of chemo benefit is in the first two cycles. All the best to everyone here. I never knew how much women have to go through before this. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 2:08pm
Alsquest,

You are a good husband caring and trying to find answers for your wife. Most GPs aren't educated in TNBC. I found myself educating them when diagnosed as many have never heard much about TNBC. TNBC is more likely to travel thrushes lymphatic system and vascular system than other bc. Chemo is used to try and treat any cells that might have escaped. TNBC has a higher recurrence rate than other bc.

I dreaded chemo too, but its doable. I respect anyone's decision, even if they forgo treatment as long as they have all the facts. The problem is we have no tests to tell us who will recur and who won't. Will your wife regret it if it comes back? I hope you and her will be at peace with whatever you decide. Wishing you the best.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 3:20pm
I need to add my cents worth to what Donna has said.
 
She has done so much research on this type of bc. She is very knowledgeable, so please do listen to her.
 
If your wife's tumor was over 2cm and it was it need to be treated with chemo. It's a must. You just don't know what her response will be. You cannot take a chance. I had the complete dose dense chemo and 35 radiation treatments and I still had a recurrence. I am okay now 3 yrs post recurrence. But I have to stress...you never know. I was 66 at diagnosis, which is not usual. This usually attacks women much younger, just like your wife. I can't stress enough that Chemo w/ radiation are our only weapons to fight with.
I am happy that the woman who took only 2 treatments is doing well. Truly, I am...but your wife needs to give herself a fighting chance. Chemo is very doable. Some even work through it.
I hope I haven't been too blunt. But I am adamant about my opinion.
Please know that we are praying for your wife and you.
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote frenchandirish Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 3:51pm
Chemotherapy is NOT a must! There are other options counter to the traditional western response of cut, poison, burn. I encourage you to do your own extensive research and choose what is best for you. Nothing is a must; as women I would hope we would encourage the right to choose... Your body. Your choice.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 4:40pm
I did say...in my opinion
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alsquest Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 5:39pm
Thank you all again. I respect everyone's opinion. I can only take her to the appointments. I cannot and will not try to persuade her one way or another. Can you help me understand why it seems that people start counting the survival time from the time they discover the tumor? Our doctor told us that the tumor was about 3-4 years old. Would something have not spread by this time if it was a fast growing type? Sorry for all the questions. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 6:01pm
Are you seeing an oncologist from an NCCN facility?

We know you can't make your wife do anything against her will. But it's important she's making the decision based on good, scientific data. Emotions run high when diagnosed and we aren't always thinking right. Many times its like a deer in the headlight feeling.

TNBC grows quickly so not sure how long we've had it when diagnosed. Some start counting from diagnosis. Others from surgery date. We've had lots of discussion on when to start counting.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 6:13pm
Please check out this link. Great source for information.

http://www.nccn.com/type-of-cancer/bresat-cancer.html
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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