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Residual Cancer Burden

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MrsBraly View Drop Down
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    Posted: Jun 06 2016 at 10:49am
This is my first time posting, although I have been lurking on this site since my diagnosis in November 2015.  Two days before my 50th birthday,( Happy Birthday!) I was diagnosed with a 2.5 cm TN tumor,  Grade 3, KI67 at 87.  I had a sentinel node biopsy that showed my nodes were clear.  I elected to do a double-blind trial of Velaparib and Carboplatin in addition to neoadjuvant chemo of 12 weekly Taxol and 4 bi-weekly A/C.  My tumor initially shrank but began to grow again on the Taxol.  My MRI between chemos showed my tumor at 3.5cm and it has remained stable throughout my A/C.  I will have a bi-lateral on Friday.  My question is,  are there any other ladies out there that had residual cancer in their tumors after surgery and did you do any other treatment after?  I will not be having radiation,  my oncologists says because I'm having a double mastectomy that will be removing all tissue.  I'm just having a really hard time knowing that the chemo really didn't work for me and I'm afraid. 
 
 
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KK1722 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 11:59am
Hi Mrs. Braly,

Welcome to the forum, although I'm sorry you find yourself here at all. I find it helps to communicate with others sharing similar circumstances.

There are adjuvant treatment options out there being explored for the Triple Negative community. Most are new and some are in clinical trials. I think another thread on this forum will be particularly informative to you if you want to read through it. I'll try to re-post it here for your convenience, but if the link doesn't work, just go back to the main forum page and look for the thread titled "residual cancer after neoadjuvant therapy, what to do?"

http://forum.tnbcfoundation.org/residual-cancer-after-neoadjuvant-what-to-do_topic12698.html?SID=46934-cafab167e288171fb1d87032523148

There's another thread titled "neoadjuvant and adjuvant considerations" that may also be helpful.

Between those two threads, I found a lot of information that helped me discuss post-chemo and post-surgery options with my MO. I hope this is likewise helpful to you.

Wishing you all the best,

Kelly
Dx 1/16: IDC TNBC stage IIB, 5.1cm, 0/3 nodes, Gr3, Ki67- 99%.
37 years old. BRCA neg.
NAC - AC/T
Dbl MX June 2016. RCB II.
1.2cm residual high grade tumor.
RADs 9/16-11/16
Adj. Tx - Unknown

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MrsBraly View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsBraly Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 12:40pm
Thank you so much Kelly for the link to the thread.  My oncologist did mention Xeloda and said we would wait for the path report to make any decisions. This information is very helpful!  It helps to know I'm not alone.
Wishing you all the best as well,
 
Chantal
 
 
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ag23 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 1:35pm
Hi Chantal,

I too didn't see much of a result from chemo.  It shrank a little bit on AC, but then grew slightly on Taxol.  I did adjuvant radiation and Cisplatin (clinical trial).  Have you had genomic testing done on your tumor (or plan to)?  I had this done through Foundation Medicine in Cambridge, and they found that my tumor was chemo-resistant and there are no FDA approved therapies/chemos that will work on my tumor.  Therefore, doing more chemo may do more harm to you than good.  It's something you may want to consider doing.  My MO was considering Xeloda, but didn't feel that the side effects were worth it (and also that given the Foundation One report info, probably wouldn't make much of a difference).

One thing I hear a lot that seems to help, is that some folks with a pCR (complete response to chemo) recur, and there are some that don't get a pCR that never recur.  They can't predict with 100% certainty what will happen to each one of us.  You are not alone!

I finished treatment at the end of April.  Do keep us updated.  That link that Kelly provided above - I'm following that thread so if you post there, I'll see it.  Best of luck with your surgery!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsBraly Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 2:29pm
The only testing that was done on my tumor was to find out if I was BRCA +-, I was negative. I'll check into it.   I have heard that PCR's can recur.  I'm just trying to make sure I am doing all I can.  I'm already worried about recurring and I haven't even had surgery yet.  Thank you for the response and the luck!
Chantal
 
 
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 3:22pm
Hi, I think I would be concerned about the directive of your onc that you would not be having radiation because you got a dbl mast. I had a dbl mast and the onc said that the radiation would be necessary to sweep up any of the small micro mets that I might have residually. Also, he explained that with Tneg, the first go round of treatments are most important to hit the disease hard with. If you go light on treatment and there is a recurrence then you have more of a battle on your hands.
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 MrsBraly Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 3:26pm
I believe that it has to do more with me being node negative.  I actually assumed I would be having radiation if I did not get a PCR.  Hopefully I will get the answers to all my concerns and questions after the path report.
 
Chantal
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ag23 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 3:31pm
Good point by the previous member.

My doctors recommended radiation since I didn't have a great response to chemo.  I had a UMX and 30 rounds of radiation.  I too was node negative (and BRAC -).  I would definitely inquire about that.  Although, my surgeon got negative margins, it was by only 1 mm. 


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MrsBraly View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsBraly Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 3:37pm
I will definitely inquire about that! 
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 5:03pm
Hi Mrs. Braly (or Chantal?),

So sorry for what you are going through!  We sound very similar.  I think we were on the same trial (I am confident I got Carbo based on blood count patterns, but not sure if I got Veliparib or not).    I also had a 2.3 cm tumor to begin with, and was node negative.  I ended up with residual cancer at surgery time (.8 cm, RCB2).  

First of all, you may still end up with a pCR (or near-pCR).  The pathology is what matters...what you are seeing/feeling could be necrotic tissue.  So you never know until the surgery.  I'll keep my fingers crossed for you.

But if you end up with residual cancer, I do not feel it is all doom & gloom!  I am quite optimistic about my case.  At least half of those with residual never recur.  The cancer, in these good cases, probably never spread to begin with, so the chemo response was irrelevant.  

But 2 things to consider.  First, radiation.  I have seen recent studies that imply that radiation even after mastectomy can be useful.  Some recent studies show that lumpectomy plus radiation is better than mastectomy alone.  There could be several reasons for this.  One, could be that the radiation is the critical element.  But, it could also be that the people who did mastectomy had more "serious" cases to begin with, so of course they did worse.  The studies aren't clear as to WHY the lumpectomy with rads is better.  But it would make me think twice about skipping radiation, and make me want to really read about this and discuss with my oncologist and radiation oncologist.  My next door neighbor had TNBC 12 years ago originally.  She had a mastectomy without radiation, plus chemo.  She recurred 7 years later locally (on her mastectomy scar line).  Luckily, they caught that early, removed it and she did chemo again (plus radiation this time), and has been fine for the past 5 years.  But she said her surgeon always said that mastectomy can't promise to get everything--it's like trying to peel a peach....it's almost impossible to get all of the flesh separated from the skin, if that makes sense.  Some peach flesh will cling to the skin.  Anyway, I am NOT a doctor, and could be completely wrong about this, but my point is not that you should have radiation, but that you should LOOK INTO the benefits of radiation.  Make sure you feel comfortable with the doctors' answers.

The second thing to consider is adjuvant chemo.  The only adjuvant chemo that I've seen that is shown to be effective in our cases is Xeloda.  Read about the CREATE-X study out of Japan.  They showed a 42% reduction in recurrence for TNBC women with residual cancer after neoadjuvant chemo, if they took 8 rounds of Xeloda.  But there are questions about this, you can read all about it.  One issue is that the node negative women showed a lower response rate, but most of them were probably ER+/HER2-, and they didn't break out the data like we would want to see it....So not all oncologists are on board.  And, as AG23 says above, it may make sense to have your tumor tested to see if it's going to be responsive to Xeloda before signing up for Xeloda.  My MO was annoyingly reluctant to let me get tested by Foundation One, based on none of his patients who were tested by F1 getting any useful information.  I would still like to know what it would have said.

I will say, I'm on Round 5 (of 8) of Xeloda, and my side effects are minimal, so I have zero regrets about getting this extra protection.  I am actually so grateful that I'm on it.  It doesn't even feel like I'm on chemo.  My hair is growing back, Xeloda is a pill so I don't go to an infusion center, my blood counts are fine so I'm not tired, I'm not nauseous, etc.  I have a mild case of hand/foot syndrome 5 days out of the 21 day cycle, but it doesn't stop me from doing stuff.  But I feel completely fine, and I feel that mentally, it makes me feel like I have an extra weapon against recurrence.  But that is a personal decision; it is logical to also prefer to put fewer toxins in your body, so I'm not trying to push adjutant chemo on anyone!  It is a tough decision; good luck.  But maybe you'll end up with just necrotic tissue and you will not even have to worry about residual cancer!!  

Good luck; I'm sending best wishes....
Tulips


Edited by Tulips - Jun 06 2016 at 5:06pm
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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MrsBraly View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsBraly Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 5:25pm
Yes, we were probably on the same trial.  I'm pretty sure I also received the Carbo based on blood counts and how lousy I felt every third week, not sure about Velaparib as well.  Like you said, I really need to wait and see what pathology says but I was beginning to wonder if there were any others like me that did not achieve PCR. I'm open to whatever I need to do for peace of mind.  My oncologist was the one that mentioned Xeloda when I asked what we would do next if I did not achieve PCR so we will just have to wait and see.  I'm glad you are having minimal issues on it and I know the peace of mind is worth it.  Thank you Tulips.
 
Chantal
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 7:23pm
MrsBraly,

Welcome and glad you felt comfortable enough with all of us to post.  Regarding radiation, I don't know the answer, but wanted to tell you my story.  I had a stage 1 tumor, bilateral mastectomy, clear nodes (0/5), so no reason for radiation.  Fast forward 13 months after finishing chemo we find a recurrence to the internal mammary nodes (regional nodes under the sternum).  I couldn't believe it and learned not all nodes drain to the sentinel nodes.  Most do (95-96%), but a small percentage drains elsewhere.  I happened to be in the unlucky group.  TNBC is more likely to travel through the lymph and vascular system than other types of bc.  

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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MrsBraly View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsBraly Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2016 at 9:19am
Thank you Donna.  I'm so grateful for this forum.  It's been very educational throughout this whole process. No one else can understand my fears.  
DX 11/20/15, Age 49, IDC-TNBC Stage IIb Gr 3, 2.4cm, ki-67 87% BRCA- 12 weekly Taxol and 4 bi-weekly A/C completed 5/9/16 BI-MX and beginning of recon 6/10/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2016 at 9:48am
Well said MrsBraly - I find that members of this forum understand our concerns, often without having to explain. That is so comforting for me and looks like it is the same for you. Thank you everyone, for all your support and encouragement, it truly has made a difference for me too!!
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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