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Adjuvant therapy for residual disease?

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Bethie View Drop Down
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    Posted: Jan 14 2016 at 2:46am
Some of us have a great chain of discussion and opinions on adjuvant therapy for those that had residual disease and are BRCA-. It is now looking like Xeloda (capecitabine) is a drug many doctors are suggesting. We are learning that carboplatin may not be as effective on BRCA- patients. I would love to hear from any and all as to what you may be finding out about possible adjuvant therapy. Here was my original post when I was looking into carboplatin:


I could really use some advice. I am trying to decide whether I should push to receive carboplatin or not. I completed 12 taxol and 4 AC infusions followed by a lumpectomy. I still had evidence of disease but my tumor shrunk from 2.5 cm to 1.4 cm with no nodes involved. I am BRCA-. 

My question is this...do I push to get carboplatin? I am terrified of a reoccurrence and want to take my best shot while I can. If the chemo did not kill my tumor then did it kill any possible "rogue cells" that could be lurking elsewhere? They are going to start a trial on carboplatin as an adjuvant treatment on women after their radiation. They wouldn't be doing this if there wasn't merit to it.

Have any of you done this? I am told that it works better on BRCA+ patients but I am not sure. I am open to all thoughts and opinions. 

~Beth



Edited by Bethie - Feb 24 2016 at 12:48pm
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2016 at 8:11am
Hi Beth,

Can you get a second opinion regarding additional adjuvant chemo?  I agree with your questions and reasoning as I've wondered the same thing.  They say Carboplatin works better for BRCA+, but I'm an example of someone who was BRCA- and responded very well to Carbo/Gemzar/Iniparib.  If you feel strong about this, get a second or even a third opinion.  We only get one chance to throw everything at this the first time hoping it doesn't return.  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 Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2016 at 11:35am
Hi Beth,
I just want to say Welcome and Good Luck.
Also, I 'second' every word in Donna's post above.  She can offer you first hand knowledge about pushing to get the Carbo in spite of being BRCA-.  
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2016 at 8:24pm
Hi Beth,

I'm in a similar boat!  I finished my neoadjuvant chemo, and my node-negative tumor shrunk from 2.2 cm to 8 mm.  I ended up being Residual Cancer Burden 2 (RCBII).  I am BRCA negative.  I was found to have lymphovascular invasion in my surgery pathology report.  I am in the midst of radiation, but am trying to get my oncologist onboard with additional adjuvant chemo, because I'm not completely comfortable with my odds of metastatic recurrence.  

A few differences:  I had taken part in a clinical trial for the neoadjuvant chemo, so in addition to 12 Taxols and 4 ACs, I also had Carboplatin every 3 weeks during the Taxol phase (and maybe also daily Veliparib or placebo).  So I'm not interested in more Carbo at this point.  

There was an exciting study that came out of San Antonio last month, showing the use of Capecitabine (Xeloda) chemo as adjuvant treatment for HER2 negative tumors showing residual cancer after neoadjuvant chemo.  It showed a very significant reduction in risk, especially for TNBC tumors (I believe a 45% reduction in risk for the TNBC cases).  However, there was a less significant, but still significant, reduction in risk for the node-negative tumors (only 12% reduction).  They didn't break out the data specifically for node-negative TNBC people, but I therefore assume the risk reduction would be between 12%-45% reduction in risk.  Google this, the lead investigator had the last name Toi.  I think everyone found these results to be very exciting/compelling, but not yet practice-changing.  The study was performed in Japan.  I think one reason that it may not be practice-changing yet is that some of the women may have been under-treated in the neoadjuvant setting (may not have gotten AC & T), so if they were under-treated, that may exaggerate the benefit of the adjuvant chemo.  So I think there's a call to run more studies like this, with more women, but I still personally found this compelling, and want to push my oncologist to prescribe capecitabine.  My oncologist is recommending no additional treatment, but I think if I'm pushy, he will ok the capecitabine.  But it makes me a little upset--I wish he also believed it was a good idea--I really trust him and think he's brilliant and experienced.  So I don't know if I should push against his recommendation.

One of my concerns relates to the lymphovascular invasion.  I don't feel like this gets talked about too much, which seems weird to me.  Some studies have shown this to be an independent negative prognostic indicator (although some studies don't).  Not quite as strong an indicator as positive nodes, but close.  So I am pretty worried about recurrence.

I'm totally on the fence and so confused!!    Please keep us posted about what you decide, and any other information you dig up that pertains to residual TNBC!  Good luck!!!

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bethie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2016 at 11:10pm
Wow Tulips, this is really helpful info.  I asked for carboplatin with the taxol but I keep getting told "standard of care" and that is all she wanted to do. I did try to get into a trial but was randomized into the arm that got "standard of care". TNBC seems anything but standard with so many variations involved. 

I, like you, respect my doctor very much and don't want to make her think I am questioning her opinion...I like to think of it as nudging her to think outside of the box and push her a little from just thinking "standard".  Either way adjuvant treatment would come after radiation so I have some time to do my research and pull things together. 

You are the second person today to mention Xeloda (capecitabine) to me. I will do more research on that tomorrow.  I found a doctor named Naoto T Ueno at MD Anderson that seems to be doing a lot of research with TNBC. He is from Japan. My doctor is telling me that BRCA+ people respond better to the carboplatin so many the Xeloda would be a better choice?

I am not up on the RCB term. I was originally a grade 3 stage 2 A or B but after surgery it was downgraded to grade 2 and stage 1. Does any of that have to do with the RCB? They did a sentinel node test and took out 3 of them that all tested negative. What is your lymphovascular invasion you mentioned and how do they find that?

I felt like I was so well informed but after reading your message I don't feel like I am! ;o)  Is there a way to leave a private message to you? I would like to know where you live and where you are being treated but don't want to put private info on this. Would love to talk with you! Sounds like we are in this boat together.

~Beth 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laika_in_space Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2016 at 12:11pm
Beth: I would definitely push for carboplatin, at least.

Tulips: Thank you so much for this information! It is really helpful! If it's not too much trouble, could you post a link to the Capecitabine (Xeloda) study you're talking about? I'd love to read more, but I haven't managed to find it googling. I did find this one [1] but it didn't show very promising results (but it wasn't specifically for TNBC).

[1] http://jco.ascopubs.org/content/28/12/2015.short

08-15 DX IDC, ER-/PR-/HER2-, grade 3, 2 cm, BRCA1/2- (29 years old)
09-15 dose-dense AC
10-15 weekly Taxol + Carbo @ 2 AUC
01-18 finish chemo!
02-16 surgery!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 11:29am
Here you go ladies - :

http://global.onclive.com/conference-coverage/sabcs-2015/adjuvant-capecitabine-improves-survival-in-her2-negative-breast-cancer

http://www.oncologypractice.com/specialty-focus/breast/single-article-page/sabcs-create-x-capecitabine-is-efficacious-against-residual-her2-negative-breast-cancer/640290eaef4c3ba4dcca6b593a52bf40.html

Not sure how to make the link hot.

RCB is a score based on a MD Andersen calculation (based on a formula) to give a recurrence risk score, post Chemo and surgery, when they can measure response to treatment, based on residual and extent of Cancer. You can ask your Oncologist - What is my RCB Index score and what are your further "best researched and latest" recommendations if I wish to be aggressive and treat further, based on my disease pathology reports (pre- and post treatment). Kindly advise.

Read our history (if you so please). We followed up (my lovely wife) with adjuvant Carboplatin AUC 6 due to residual disease (RCB 2) post neoadjuvant taxol x 12 and FEC x 4, a LX and radiation.
Ironically, we did our adjuvant carboplatin at Kyoto University Hospital, where Dr. Toi is the head
of breast oncology. At the time, perhaps the Xeloda study was ongoing. We forced the adjuvant Carboplatin due to slight EGFR+ and as we did have some doctors telling us to go for it, whilst others felt it would not change much and they also worried
about toxicity. Doctors talk in terms of toxicity vs clinical end points of what is known data: Overall Survival benefit and Progression Free Survival benefit. You always have to weigh the risks and at times take complicated decisions. It's never easy - we understand totally. But it is a personal choice, and I am glad we did whatever we could at the time. Now we hope and "live" life :) to the fullest.
You do what you can after seeking good 2nd and 3rd opinions and then hope for the best.
Best wishes to you ladies.
Desh

Edited by made2b2gether - Jan 17 2016 at 7:43pm
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 5:19pm
Thanks for your post made2- We're at Scripps, San Diego/La Jolla and wanted to pass along this about genetic testing...

My wife's oncologist said early-on that the bloodtest isn't reliable, he would send out the tissue after surgery. That's not to say blood -markers are not important, my wife says they are taking her blood for cancer detection(in addition to the blood cell -counts) each 2 weeks of chemo (she has 3 more of (12) Taxol) She says it's for a specific tumor marker.

She got results on tumor-genetic-testing--- they use Ambry Genetics. They tested for:
BRCA1 & 2
CDH1
PTEN
TP53
PALB2 (results pending)

results: " No clinically significant variations detected "

fyi, hope this helps anyone, G./ my wife is 65y/o


Edited by gordon15 - Jan 17 2016 at 6:54pm
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Post Options Post Options   Thanks (1) Thanks(1)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 7:18pm
Dear Gordon,

We also went through some extensive tests. BRCA 1, 2 (2x), MLPA, TP53 Another 17 gene Panel (similar to Ambry BreastNext but more extensive), Molecular Health's post tumor Sample profiling of some 200+ genes. Not much was found that could guide us towards immediate further treatments, but I like yourself, wanted to be thorough, within my means, and we also had good guidance and support.  (of course, we had on-time guidance and care from a very kind gentleman on here, and of course the entire foundation community that wrote back whenever we had concern or simply needed to vent).  
Hoping for the best for all of us.   Important thing is to be proactive, reactive, a self advocate, and hand-in-hand with this community. We only have a voice if we stay together and voice our opinion as a group (although we are still tiny in comparison). But key is staying together, supporting one another, and keeping up the fight and demanding more be done. 
Stay blessed.  You have excellent facilities and doctors down there in San Diego.  Keep at it.  I wish you nothing but wellness.
Thanks for the info. on the blood tests. Yes, blood markers are very important but aren't always reliable so one has to stay vary of symptoms and also follow up closely with one's Oncologist. 
My wife is now 30.  I admire her grit and her will.  
Desh


Edited by made2b2gether - Jan 17 2016 at 7:41pm
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 7:25pm
thanks for you post.. I don't know if  capecitabine is related to Carboplatin, my wife has to finish 3 more Taxol, then radiation...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 7:39pm
Ok Gordon. I wrote above, but my wife is 30 and at the moment close to 1 year 6 months out post surgery. She is 30 years of age.  
Good luck with the 3 more Taxol and then the radiation. And post treatment, seek a comprehensive opinion once again on an explanation and analysis of what they see in terms of treatment success, and based on what is available at the time (after searching their database of trials etc.), what they suggest as the best next route.
You're a great husband Gordon. I can learn a great deal from you and also from your experience. 
Look after yourselves. A bit more to go. Please go strong and best wishes to your lovely wife.
Desh

ps- la jolla is beautiful and fortunately, all the state of the art facilities are right there or close by.  
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 8:13pm
Thanks for you reply . La Jolla isn't beautiful for all here struggling, not to dig you, but my life, as yours is devoted to dealing with chemo (now) rather than sunsets (again, no offense) As I've posted here before, radiation is supposed to attack the incision after a mastectomy (my wife) and we had a 2nd opinion at Moores Cancer Center/UCSD, and the radiation is targeted to other lymph nodes/ (clavicle/ sternum/ armpit/ .

We don't live in La jolla, but fortunately, Medicare covered Dr Wilde/ Scripps La Jolla/ and her policy is to see as many patients as possible, because she is dedicated *she's proven that to me)

I'm really happy for you 18 months without therapy, we are hoping for that.

That is so great, for a couple to semi-relax and live a life, we can't do that yet...


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Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2016 at 8:18pm
Ok, i hear you on La Jolla, San Diego. No offense taken whatsoever.   I cannot comment on medical insurance related difficulties in the USA, although I do read about the complexities, but I can surely tell you this, that for TNBC, you have a ton more at disposal than very many of us have outside the United States.  Especially in countries where things are more stagnant and also very much process-oriented or standardized. Herceptin, when available for Her2 as a breakthrough drug, wasn't even available under insurance here up until 5 years after it was widely available in the United States - You can just imagine what that means for women dealing with Her2+ cancer here.  So no, it is absolutely not a rosy picture or a happy sunset.  Every step is a fight. 

More importantly, I'm glad that you have a doctor in whom you have faith. Wishing you and your wife the very best Gordon.  I know this is no easy ride and the anxiety never really goes away.  And yes, semi-relax it is.  I paint a happy picture because we need even the slightest bit of positivity and hope too.  The scare with any swelling or pain or symptom  is very much real and is an absolute nightmare. But within all that, we have to find our peace. Or at least for now, we've learned to do so.   We too have our fears, our daily problems, but so does everyone else.  
I hope that all goes well in the coming weeks and months.
Take care,


Edited by made2b2gether - Jan 17 2016 at 8:31pm
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2016 at 4:57pm
Thanks, Desh, for answering the questions before I got to them!  Also, I am so charmed reading your comments and Gordon's....what fabulous husbands you both are.  My own husband is an absolute peach, fabulously supportive, I could not ask for more.  But I am the one more interested in research, so I am just amazed by the two of you staying on top of everything.  I hate that your wife was so young to deal with this.  At 45, I kind of feel like I'm young, but I know 45 does not sound young to a 30 year old!!  But being 18 months out is fabulous-- since the vast majority of recurrences occur in the first 3 years, I would guess that whatever her recurrence risk was has been halved by now!  Best wishes to everyone!  


Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2016 at 7:31pm
Dear Tulips,

First of all, stay blessed.  You're doing the right things as far as treatment goes, so keep doing your very best.

With regards to your dear husband, we all play our own roles and I am sure even with less research he is a wonderful human being.  In every family it is different. People are different in how they approach things in times of trouble.  My wife researches less, I am the "anxious wreak of a hypochondriac" :).  But at the end, what counts is that we have loved ones around us, and that we can share and grow together in this fight.  So, I admire your husband as well. 

Gordon is a gem of a person.  I've seen his interactions on here and I admire him and he's had a lot more experience in this than I do.  So I guess we can all look up to him and also keep giving him support on here.  
We need all your prayers and support too.  

Yes, my wife is young, but at any age, 28, 45, 70, 80, this is a shock and it is painful and difficult.  At 30, it blows your dreams up of "possibly" having children (yes, I know you can preserve eggs etc.). But nevertheless, at any age, this is a fight and even at 45, you're so young.  People have responsibilities at different ages, people to look after, to love, work, etc, so what i mean to say is that this diagnosis is difficult at any age, and I just hope and pray that the medical community does more, to help all of us. 

Please look after yourself and heal well.  Yes, about 18-months out, but we have our anxious moments and at times fear the worst.  But then again, who around us doesn't have any problems?  Of course, for my wife to be healthy, i'd give up pretty much anything, but I am also happy to be in this with her, and I'd marry her a million times over, even knowing what we have gone through in this.  It's  a part of growing together, even in pain, heartache and tears.  But we're together and it is that bond that is also irreplaceable.  I think if we focus on the good also sometimes, there comes a sense of appreciation and that also can give us the will to keep fighting.  

Look after yourself.

Stay blessed.

Desh
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ImaJ Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2016 at 10:09pm
Hi everyone, came to the site tonight to ask if anyone had knowledge of this new research that Tulips mentioned using Xeloda after radiation.  My oncologist suggested today that I think about it, and she seems to be in favor of doing it.  She was at the breast cancer conference in San Antonio where this was presented.  

I am finished with chemo and lumpectomy, will do radiation in February, and then have to decide in March whether to go for Xeloda or not.  It is not an easy decision, and I might in fact have to get a second opinion to help me out.  I was node negative, no vascular invasion, but my tumor was big or around 5cm (although they seem unsure about the original size, somewhere between 3.5cm and 7cm).  Chemo brought the tumor down to 1cm and they got clear margins.  I really thought that I was in a pretty good place until she suggested this today, to add more chemo given I still had cancer after chemo, even though my tumor responded so well and shrunk a lot.  Not sure at all what to do but will have some time to think it over.  Although Xeloda is generally well tolerated it still has some side effects, and 6 more months of that is a lot to digest.    

Tulips, where did you read that node negative women had less response to Xeloda?  I was trying to find that and couldn't see it.  Big difference between 45% success rate and 12%, and it might affect my decision given I was node negative. 

Re. Carboplatin, I was told by two different oncologists that since I am BRCA negative that platinum based drugs would not make a big difference for me, so I opted to leave it out.

Cheers!

ImaJ  
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Post Options Post Options   Thanks (1) Thanks(1)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2016 at 10:53pm
Hi ImaJ:

You have had a very good response to treatment.  I know, we all want pCR.  

The article reads as follows:
Those with HR-negative disease (n = 296) experienced a 42% reduction in the risk of recurrence with capecitabine (HR, 0.58). In the HR-positive group (n = 561), the benefit with capecitabine was less pronounced (HR, 0.84). Subgroup analyses are ongoing to assess the impact of capecitabine in patients with triple-negative breast cancer, said Toi. 

http://global.onclive.com/conference-coverage/sabcs-2015/adjuvant-capecitabine-improves-survival-in-her2-negative-breast-cancer

With regards to Carboplatin even for BRCA- disease, I have been told that although it works better for BRCA + patients, on the whole, Carboplatin seems to respond well for TNBCers (but this was the opinion of two physicians and there were also other physicians that said that there may not be much overall benefit in terms of OS and DFS/PFS).  Since TNBC is such a diverse disease profile, focusing on exact data alone is also not an exact science.  Doctors will focus on recent studies, overall survival and progression free survival benefits. But perhaps molecular profiling of your tumor may  be one option, for some further insight.  But, molecular profiling also gives VUS (variant of unknown significance) results, and specific genes may not have a practical medical application in approved medicine today (sometimes only in early clinical trial settings), therefore, this is something to discuss.  I believe Molecular Profiling can also be a bit on the expensive side and I am not sure how much is covered by various insurance providers. The results normally take 2 weeks once your doctor has ordered the test on your tumor samples. 

More importantly,  with regards to Carboplatin, one ought to check for BRCAness in addition to BRCA+/-.  Even if you have BRCAness, then they say (physicians) that Carboplatin is the choice to go with. So you out to be tested for BRCAness.  (but discuss with a Medical Professional in detail)

Of course, you should also do more research on Capecitabine.  It was one of the very few positive studies that came out of the last ASCO 2015 conference.  We were all hoping for more Cry

When we were diagnosed, the big talk was Carboplatin.  We wanted it as a part of our standard chemo so badly, but our doctor would not give it to us.  So we did it adjuvant, post radiation. Unfortunately, it was not covered under insurance for breast cancer in our Country, so we had to pay for it outside of any insurance plan/scheme, with special approval from a physician that reviewed our case.  
Shortly after being treated, studies discovered that it works better for those with BRCA 1, 2 + and for people that have gene repair issues, also known as BRCAness.  We also did not exhibit any BRCAness (so who knows how much it really worked? 

Yet, despite this, a Stanford physician told us at the time, if you can do anything about it now, then you ought to go ahead and do additional chemo, so that you know that you did everything you could (at the time).  Data will constantly change as science develops, and as scientists are able to recruit more representative samples to conduct better and more representative research.  

Of course, you always have to think about side effects and toxicity vs. more treatment.  Your doctor should be able to do more specific research on this and give you more data / information on each study.  They should also be able to tell you more specifically about your pathology, and Immunohistochemistry (IHC), and why one agent vs. another is likely the better one for you.  And of course, they can give you all the information on toxicity and an opinion on doing further treatment vs. not doing further treatment (risk vs. overall benefit).  If you cannot get all the answers in one place, and you are not comfortable, then a 2nd Opinion is surely warranted. 

At the end of the day, it is a personal discussion and decision with your trusted Physician.  I wish you the best with your decision.   Wishing you healing. 

Good luck

Desh




Edited by made2b2gether - Jan 18 2016 at 11:04pm
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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Post Options Post Options   Thanks (2) Thanks(2)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2016 at 4:53pm
Thanks everyone!

ImaJ, here is the info about the capecitabine/Xeloda and the risk reduction by node status:

"Across all treatment groups, capecitabine was superior to standard therapy alone for DFS. For those with ypN1 after neoadjuvant therapy and surgery (n = 339), there was a 46% reduction in the risk of recurrence with capecitabine (HR, 0.54). However, in patients with ypN0 (n = 345) and for those with ypN2/3 (n = 199), the benefits were less pronounced with capecitabine, with hazard ratios of 0.88 and 0.82, respectively. Those with HR-negative disease (n = 296) experienced a 42% reduction in the risk of recurrence with capecitabine (HR, 0.58). In the HR-positive group (n = 561), the benefit with capecitabine was less pronounced (HR, 0.84). Subgroup analyses are ongoing to assess the impact of capecitabine in patients with triple-negative breast cancer, said Toi. - See more at: http://www.onclive.com/conference-coverage/sabcs-2015/adjuvant-capecitabine-improves-survival-in-her2-negative-breast-cancer#sthash.J7Hqec65.dpuf"

So you can see, there was only a 12% risk reduction for the node-negative (ypN0) patients (HR .88), but this was comprised of 2/3 ER+/PR+/Her2- women, and 1/3 TNBC women.  Since the TNBC women had a much greater risk reduction than the non-TNBC women (42% reduction vs. 16% reduction for non-TNBC), I believe it is logical to assume that the women who were both node-negative and TNBC had a response greater than 12%.  Or, if you look at the TNBC women with their 42% risk reduction, you know that some of those women were ypN0, some ypN1, and some ypN2/3.  Since overall ypN1 women had the greatest response, it is reasonable to assume that the ypN0 TNBC women had a risk reduction that was less than 42%.  So i assume the risk reduction for ypN0 TNBC women is between 12%-42%, but would really like to know that number!  I emailed Dr. Toi the other day to see if they cut the data that way, but I haven't heard back and have no idea if I ever will.  If I do, of course I'll share the information.

I'm disappointed that the node-negative women had a smaller improvement (of course, the bright side is probably this is due to the fact that they had a better prognosis to begin with, so less opportunity to improve??), because I have a real urge to do more!  I don't really feel safe right now, and feel that physically and mentally I would be better off doing more chemo.  But if my current risk of metastatic recurrence is approximately 30%, then a 12% reduction would only improve that by 3.6 percentage points, possibly not worth doing more.  However, a 42% reduction would improve that by 12.6 percentage points, reducing my risk to 17.4%, which would TOTALLY be worth it to me.  So I am really on the fence here!

I'd love to hear any thoughts that anyone has on making a decision like this, and curious what Beth and ImaJ are thinking!

By the way, you can google, "MDAnderson residual cancer burden calculator."  If you have your pathology report handy, there are about 5 items to input, and you will find out if you were RCB1, 2, or 3.  I think several recent studies have shown that RCB1 patients have as good a prognosis as pCR patients, which is really good news.  As for me, I was RCB2, so that's why I'm interested in more.

One more thing:  I found several articles about the Xeloda study, and each article had some additional/different information.  But ultimately, I was able to go on the San Antonio Breast Cancer Symposium website, and find the audio and powerpoint of Dr. Toi presenting, and all of the information was there, so you don't have to rely on a journalist's interpretation!

Thanks everyone!
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2016 at 4:58pm
By the way, a few things that you all may/may not know, that took me a little while to figure out:

ypN0:  the p stands for pathology, the y indicates the patient had neoadjuvant therapy and we are looking at the amount of residual cancer, and the N0 means node status zero, or clean nodes.  ypN1 patients had a little bit of residual cancer in lymph nodes after neoadjuvant chemo, and ypN2 and ypN3 patients had more residual cancer in their lymph nodes.

Hazard ratio:  if the HR is .88, then the risk reduction is 12%.  If the HR is .75, the risk reduction is 25%, etc.

I hope that helps!
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ImaJ Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2016 at 10:15pm
Tulips thanks so much, this is lots of good info!  Turns out I am also RCB2 so we are in a similar situation.  My lymphatic vascular invasion was negative, and you are right in that they have never given that too much attention, although initially when I was diagnosed I was told this was good, but perhaps it was the only good news the doctor was holding on to for my sake.  

I would also love to have more data on the subgroups, as it would make the decision to go for Xeloda or not much easier.  E.g. my surgeon talks about how well my tumor responded to chemo, that going from 5cm down to 1cm is great response, as if that should mean something for my prognosis.  I assume that my RCB2 status is based on more than just the size of the residual tumor, or how much it shrunk in percentage terms?  So I wish there were subgroups within the TNBC node negative population in this study that would show the difference in response to Xeloda based on size of residual tumor and how much response they got with chemo.  Does that makes sense?

One one hand I feel that going from say 85% DSF to 88% might not be worth doing Xeloda, but on the other hand it is a relatively well tolerated drug that can be dose adjusted easily, and if it gets to be too much one could always just stop and be done.  I have about a month and a half to decide if I am doing this or not and will be looking for whatever information there is out there to help me out.  My surgeon and my oncologist are going to talk to each other about my case and let me know what their mutual recommendation is based on all my numbers.

When do you have to decide this by Tulips?  Are you done with radiation?  
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