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Fighting Mama View Drop Down
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    Posted: May 29 2015 at 5:18am
I've been getting the weekly taxol for 7 weeks. Today is week 7. I still had a hard tumor but we thought it was getting better... Ultrasound Earlier today showed no change :( it's still 2.1cm that is with 6 weekly taxol treatments...

They said I'm only halfway through taxol and since it's not growing they still consider this good. I feel like if it's not shrinking the tumor how they he'll is it killing the rooming cells in my body!

Is it good that it's not bigger? Im scared... Could the cancer be spreading because this chemo is working right. My doc said might change to AC...Or surgery now or I can continue Taxol and have another U/S in 3 weeks.... I have no idea what to do :(
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 8:53am
Fighting Mama, take a look at Donna's latest link on the Moon Shots thread. I'm remembering back and looking at my notes. It seems it was just after 6 weeks that my tumor started to soften and 8 weeks when it started to shrink. So you may be in the same mode as me and just on the brink of seeing some changes happen. Fortunately for you, you have that tumor in place so you and the doctor can keep checking the progress.

From Donna's link...seems appropriate to check out the pathology of the tumor more closely than switch over to AC without knowing what characteristics you're trying to fight.

"What clinical trials are available at MD Anderson for TNBC patients?
For those who still have a lot of the cancer left after surgery, we're working on several clinical trials. These will allow patients to receive a new targeted therapy combined with chemo before surgery.

For those with metastatic disease, we have many exciting new targeted therapies and immunotherapy-based clinical trials

Because each trial has very different eligibility requirements, it's important to talk to your primary oncologists about your options.

What's your advice for newly diagnosed TNBC patients?
TNBC tends to be aggressive, so find out what stage you're at. Ask if the cancer has metastasized.

If your TNBC is resistant to chemotherapy or has metastasized, look into clinical trials. Be sure you know and weigh all of your treatment options.

If your cancer hasn't metastasized, ask if you need surgery or chemo first. TNBC generally responds to chemo, but the disease often comes back. This is why it's important to get input from both your surgical oncologist and medical oncologist.

I strongly recommend getting multidisciplinary care someplace like MD Anderson. That way, your surgeon, oncologist and radiation oncologist can work together closely throughout your treatment. A team approach is the best way to ensure every aspect of your care has been taken care of.
What clinical trials are available at MD Anderson for TNBC patients?
For those who still have a lot of the cancer left after surgery, we're working on several clinical trials. These will allow patients to receive a new targeted therapy combined with chemo before surgery.



Edited by mainsailset - May 29 2015 at 8:56am
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 8:57am




   Hello Fighting Mama,    I think it is good that the tumor is not growing. Your Dr. has given you some choices to consider and may have had more in depth discussion about this with you. If it was myself I would have surgery now to remove the tumor and continue with the chemo as soon as possible after the surgery.

                           To continue with the Taxol and have another ultrasound in 3 weeks in my opinion is playing with the unknown.

                           Perhaps this whole situation that you have a tumor that has not grown or shrunk indicates the next move and that might be to remove it now.

                            I am not a Dr. this is just my own opinion on the matter.

                            I will pray for you and for your best decision. Go with your instinct on this. I know your scared. We understand and please let us know.

                             Take care and God Bless.

                             Love, Annie

Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (1) Thanks(1)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 10:36am
Dear Fighting Mama,
My wife's tumor was also 2.0cm (stage 2B) so close to your tumor size on a Ultasound.
On taxol, after the 12 weekly treatments her tumor had only shrunk 3mm est.
And was ONLY down to 1.7cm. This is not ideal by any means but it is also
Good that there was no growth. But no one can tell you if cells got away so its a
Good time to have a detailed discussion.
The next 4 FEC (similar to AC) my wife's tumor down to 6mm. Better, but not a pathological
Complete Response. We did opt for more therapy and radiation, but we did not have many
Clinical trial options available to us where we reside.
First things first. Do you happen to have the BRCA 1 or 2 Mutation?
If yes, you may want to continue with Taxol, but putting Carboplatin into
the mix may be a good decision if your oncologist and surgeon agree - it
Has shown good response in BRCA Mutation carriers. Also, you will be a
a good candidate to reveive PARP inhibitors along with Carboplatin, if you
do have a BRCA mutation. So if you haven't checked, do so right away as
It will help you take clinical decisions along with your doctor.
The same applies if you do not have a BRCA mutation, but if you show repair
mechanism defects or what they call BRCAness. So talk to your Doctor.
You may have your tumor tested further for what chemo may be most suitable
As a next step, if you are not Found to have a BRCA mutation or BRCAness.
You may also want to take a full breastnext panel with Ambry Genetics - their
17 gene Panel.
But most importantly, if you do not have the BRCA mutation or BRCAness, have a
Detailed discussion with your Oncologist and your surgeon and maybe even seek a
2nd opinion from a TNBC specialised Medical Oncologist on what they see as the best
Decision at this Stage. 1) go for surgery and on to AC or 3) finish up Taxol or 3) follow up
With further tests and go with a different chemo regime or the clinical trial route.
It is good that your tumor did not grow and it may even be slightly damaged, but in all honesty
It is also true that when chemo works on fast growing cells, after 6 weekly taxol chemos, one may
expect much more shrinkage and the tumor to melt away more. So the bad is that just maybe it is not very responsive to Taxol / a Taxane,
But there is also good A) you now can take a expert prescribed decision because your response has been
measured / checked interim on Taxol, so you can take Vital decisions now (some who had surgery first do not know how they responded) and B). There was no Growth either.
So at this stage please have a detailed duscussion with your treatment team, seek a good 2nd opinion from a TNBC specialised researcher / oncologist, and then take a call and go after this thing with all you've got.
The reason you are on Neoadjuvant Chemo is to measure response and to take vital decisions with your medical
Team, so have confidence and know that you are still very much in a position to take good decisions with your team to beat this. Its going to be fine. Do not panic. Take notes, ask questions and ensure you get specialised guidance to decide upon the next course of action. There are options.
You may also want to speak with Steve at Sage Patient Advocates. He is on this Forum and he can guide you towards a 2nd Opinion, if required - not medical advice, but he is very experienced and well versed with TNBC, Genetics, and he is a well connected, caring individual whom is a very kind and a likable person.. Of course I am not a medical professional but we had a similar experience in our treatment. So its time to talk to your medical team!
Sorry for my errors / grammatical errors - it's late here in Japan and I'm typing on my smart phone, so my typing is error prone :)
Good luck. We are with you.
D&M

Edited by made2b2gether - May 29 2015 at 11:14am
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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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 12:32pm
Fighting Mama,

You've been given some good advice.  Are you being treated at Dana-Farber?  If not, they would be a great place for a second opinion on treatment and also a 2nd opinion on the pathology.  Now is a good time to seek another opinion.  Can they test the pathology biopsy for chemosensitivity?  Here's a link to NCCN member institutions:

http://www.nccn.org/members/network.aspx

The fact that the tumor hasn't grown is good even though it's disappointing that it hasn't shrunk.  Some tumors are resistant to taxanes.  For me, I had surgery first, then chemo.  I ended up recurring and my onc thought that my tumor might not have been responsive to taxanes, so we tried a different chemo combo the 2nd time as part of a clinical trial.    

Please keep us posted.

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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Hi all,

Thank you so much for your responses. I am at Dana- Farber in a clinical trial so that is the tricky part! My MO is actually running the study I am in (it is being run at many hospitals) so she knows young woman and triple neg very well.   The study I am in is testing Taxol and Cisplatin as first line of chemo for triple negs that are BRCA-.
My MO said that is is still early and the fact that a grade 3 aggressive TN hasn't grown is good... If I were resistant to the Taxol we would see growth by 7 weeks. She wants to give it more time. Then do the AC.   Then I will have a double MX. She said if I have an residue disease I can get Cisplatin. I won't have the tumor anymore to know if the platinum helped but I think I need to hit this with everything I can now. After that I can hopefully get rads and be done with this :(
It is so hard.... Having no shrinkage was a hard hit but I do think it was early in my chemo journey and I am glad it didn't get bigger. We all know that TNs grow so fast! I just hope that it is killing off any rouge cells... That is my biggest fear :( I am so scared of having this spread. I am only 30 and I have my 6 month old baby to think about. I always question if I'm doing the best possible things to beat this.
I did the clinical study to be the most aggressive and now I'm faced with this? I'm feeling like maybe the standard AC-T would have been better.....
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 3:21pm
Fighting Mama,

I'm glad you are going to Dana-Farber and involved in a clinical trial.  I agree with you that with TNBC being so aggressive, no change is still good.  The only think you might want to ask is maybe try a different chemo regime?  We had a thread talking about adding Carboplatin to Taxol, then A/C increases pCR.

"Our findings suggest that carboplatin could be used either in addition to or instead of some of the drugs in the standard chemotherapy regimen for women with triple-negative breast cancer," says the study's senior author, Eric Winer, MD, chief of the division of Women's Cancers in the Susan F. Smith Center for Women's Cancers at Dana-Farber Cancer Institute.

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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 4:20pm
After reading everyone's excellent advice and then your response I think I'm going to stick to my first response to let you know that sometimes 7 weeks is early on to see shrinkage. I was on a clinical trial and we were bombarding the whiz out of the tumor with both taxol & sutent and my onc was cautious to jump ship and try something new. He was right, for me. I'm also thinking that no growth could be translated into success just as it takes awhile to stop a freight train speeding down the tracks once the brakes are applied. I'm so glad you're under the good care of Dana Farber, perhaps they will take up your case in their tumor board and give you their collective thoughts.

Edited by mainsailset - May 29 2015 at 4:21pm
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fighting Mama Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2015 at 4:29pm
Thank you so much for all your advice and support :)

I just spoke with my MO and she said she wants to do two more weeks (so 9 weeks taxol) and do another ultrasound. She said if I don't have a change in size we are moving on to a new plan. She is running this trial so I feel confident she knows what is best. We have spoke about adding Carbo to the taxol but she is really against for early stage TN. She said the combo is very toxic and since I am so young she wouldn't recommend it. She does however like Cisplatin and I do plan on getting that. I will either move on to the next or do it after AC and surgery.

I am scared but I feel like I am doing all I can.... Cancer is scary especially TN but meeting survivors who made it out the other end of all this treatment gives me hope :) thank you
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   Hi Fighting Mama, Wishing you all the best of results with shrinking that tumor in the next two weeks!!!

                      Take care and God Bless.

                      Love, Annie

                    
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fighting Mama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 11:07am
Hi all,

Just wanted to thank you again for all your support!
I have an update and another question!
So after 8 weekly Taxols my MO is pulling me from the trial. I have an ultrasound today to see where we are at... Hopefully smaller or at least the same... I've been having pain...
Then I am scheduled to start AC Thursday! The only thing is she wants another core biopsy before the the chemo Thursday because she wants it for the trial... This would be my 3rd biopsy! I had one to diagnose... One to join the trial and now she wants one to leave the trial....
I have read that core biopsies can spread cancer... Is that true?
Do you think it wouldn't be bad because I am getting chemo directly after? Should I say no?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 11:57am
I pulled up this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3473763/ and it makes a good suggestion...but please do read the entire abstract.

Image-guided percutaneous needle biopsy of the breast is widely practised in breast units. In a significant proportion of cases the biopsy is undertaken to confirm a putative diagnosis of malignancy. A variety of needle devices are used. The simplest and least traumatic is fine needle aspiration (FNA), in which a thin fine-gauge needle, commonly 22-G, is inserted into the tumour. Vigorous aspiration is undertaken and the cellular aspirate is either smeared to slide or preserved in transport medium. Larger needles, commonly as large as 11- or 14-G, are frequently deployed, often with the aid of a spring loading device, e.g. a biopsy gun (Bard Medical Systems, Tempe, AZ) [1]. More recently vacuum aspiration devices have been deployed to further enhance specimen retrieval.

Inevitably, as the needle transgresses the tumour field and is withdrawn there is the potential for cells located in the tumour to migrate into the adjacent soft tissue and skin as a consequence of the violation of the tissue by the biopsy needle. The possibility of tumour spread following needle biopsy is well recognised but appears, in the majority of cases, to be an infrequent occurrence with little direct impact on patient outcome. Nevertheless, anecdotal reports of probable extension of the tumour down the needle track leading to a local recurrence do exist. In the light of this a comprehensive literature review to determine the potential for this occurrence was performed. This paper describes our search methodology and findings.


Edited by mainsailset - Jun 09 2015 at 11:59am
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fighting Mama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 12:05pm
That is the article I read also! What I am wondering though is this is based off people who waited ans had surgery... I am heading to chemo right after...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 12:17pm
I think I'd print out a copy and take to your doctor. Lay out your concerns and ask if they will use the vacuum biopsy device. If they are doing the biopsy solely for the sake of the trial that's one thing, but I doubt that's the case. Testing to see if your tumor has changed its characteristics should work in your favor. Perhaps ask, if you go ahead, what other tests can be done on your tumor cells that would more clearly define what subtype it is, other characteristics, that would open up doors to a more personalized treatment for you. Best of luck!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fighting Mama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 1:49pm
It's just for the study... They aren't testing anything for me.... But I'm afraid if I opt out of the trial I would be able to get the Cisplatin later... And what if I need that? I'm not sure what to :( thanks for your input!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 2:34pm
I'm still thinking your best bet is to print out the article, show it to the doctor, lay it on the line that you're not comfortable exposing yourself to the risk based on what you know but that if they do use a vacuum device and they do do further tests that will actually benefit your treatment decisions, especially since you have just experienced being pulled from a trial because it's not working well. The further testing are especially important given the trial's failure against your tumor.

Then you might start part II of the conversation and say you will wait until you get the results of the biopsy to figure out what to do next. Until you get that biopsy in hand with its story laid out, all you're doing in spinning your wheels on what if's or even worse, revert to generic standard of care. Guesswork is not our friend. And this is a moment where maybe you can get some definitive answers on just what you have to deal with. This is a good moment if the doctor will grab it with you.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 6:34pm
If that biopsy is no benefit to you, she should be willing to forgo it and NOT punish you by denying Cisplatin. Your situation - with a brand new baby!!!!   Warrants consideration - skipping a painful, useless invasive procedure in the midst if all this, especially since she cannot in good conscience say its 1000% safe for you. If you were in my city I swear I'd offer to go with you to your appointment as advocate on this, I feel so strongly about it.
Biopsy is no small thing!!! I had my first ever panic attack during my 3rd biopsy - felt like I was dying. Nope! Tell your doctor there's a group of TN women on this site that would like to file a formal position on this issue on your behalf, LOL!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2015 at 8:20pm
I'd only do the biopsy if there is a benefit in terms of further analysis of how the tumor has changed (in response to the current line of treatment), if it is to figure out the most suitable next line of treatment, or if it is for qualification into a new and more appropriate clinical trial or for other treatments that are doctor has approved and are better for you - you need to seek a medical explanation as to what has been analysed and why they feel that this mode of treatment or that mode of treatment is the better choice for you.
Advocate for yourself.  If you are to give a biopsy, you want to insure that molecular profiling (gene profiling), immunochemistry, or something in depth is done to help you with your now treatment so that you can better respond to fighting the cancer you are dealing with today.  If you are giving anything to any hospital, there has to be a fair exchange and it should not only serve for their research purposes.  There has to be mutual benefit and we here stand for you and ONLY for your well being.  Speak to your doctor, and take the advise given above by all the wonderful women.  Speak to Steve if you see the need.  You are at a great medical center from what is described above, so that is great.  Speak to your team and see what is in it for you before you sign on any dotted line.  The main important question now is what next effective therapy and treatment option - they need to answer that question clearly and give you proper guidance. 
be well. 



Edited by made2b2gether - Jun 09 2015 at 8:25pm
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 Fighting Mama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2015 at 8:12am
Thank you so much for your support. I am calling this morning to tell her I'm not doing the biopsy. I can't put myself through that right now. I'm scared enough :(
I'm starting AC chemo tomorrow though! Wish me luck! Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2015 at 11:27am
Good Luck with the AC.
Just a quick question - did you get BRCA 1,2 tested?
If not, please do. It opens up Chemo / Therapy Options.
Be well. Hope the AC slaps this thing around and it melts away.
Have faith. Its going to go well. Best wishes,
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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