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Positive nodes after neoadjuvent chemo

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Jdm4 View Drop Down
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    Posted: Nov 01 2018 at 11:03pm
I was diagnosed on April 24, 2018 with Tnbc in the right breast with multiple tumors and 7 lymph nodes. Went thru neoadjuvent chemo 2 months of AC and 12 weeks of Taxol. Just had bilateral mastectomy and had .9cm left in the breast and 9 positive lymph nodes. Original tumors combined were over 7cm. Chemo was effective in the breast but didn’t do much in the lymph nodes. I had asked my Onc and surgeon why the lymph nodes did not respond so well and was not given an answer other than we don’t know. They just tell me it is an unusual case. Will be doing radiation for 6 weeks once i am 4 weeks out from surgery then Zeloda for 6 months. Receptor status was rechecked in tumor and lymph nodes and all still Tnbc. Anyone else have similar issue with lymph nodes not responding so well? Feel like i am not getting answers and am scared and concerned about the treatments coming up. Going to get a second opinion to make sure the recommended treatment is my best option.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2018 at 4:42pm
Hi there

Unfortunately, there is no specific answer as to why one area responds better than others, but do ask your oncologist why Carboplatin wasn't added to your weekly taxol treatment cuz there is evidence that it improves responds in Triple Negative. Also, ask her to consider giving you 4 cycles of it before you start Xeloda.

Good luck and keep us posted.


Edited by rstar - Nov 04 2018 at 12:10pm
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Lisa s View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2018 at 7:23pm
Is carboplatin common? It was not even offered to me...does it depend on stage and brca status?
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Jdm4 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2018 at 7:25pm
Thank you for your response. I am actually getting a second opinion on Friday and will ask his opinion. I am also going to ask my current oncologist about doing carboplatin in addition to the Xeloda. Appreciate it!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2018 at 7:39am
Hi Lisa

Carboplatin is not part of the standard protocol (yet), but oncologists tend to add it when a woman is at a higher risk of reccurance, regardless of brca status. Basically when there's node involvement or a big mass in the breast. Hope that helps

Edited by rstar - Nov 04 2018 at 12:11pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2018 at 8:42am
Thank you for commenting on Lisa’s comment. Will be pushing for the Carbo. I did see there were some clinical trials with Carbo. Looking into them.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2018 at 8:53am
You're very welcome.

My mom was in a similar situation (and a brca1 carrier), did not receive Carbo by her oncologista and eventually reccured..This is a frustrating situation and I feel obligated to try and help others if I can.

Edited by rstar - Nov 04 2018 at 12:16pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2018 at 1:31pm
I had a recurrence (very rare), did Carboplatin and Taxol. Got a complete response, all cancer gone or dead at mastectomy. It had been 2-ish cm before chemo. Most people do well on Carboplatin. I was sick as a dog, ended up hospitalized at one point. Eventually figured out what combination of drugs and stuff kept me going and got thru it. Totally worth it for the outcome!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 James123 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2018 at 3:41pm
JD4M

This my situation as well. I had 4 rounds of AC and 11 Taxol and had MRI which showed breast tumor shrunk from 2.3 to 1.6cm.and my lymph node only shrunk from 3.4 cm to 3.0 cm. I too requested Carbo and was declined because I was BRCA NEGATIVE. I am scared too. My surgeon says she will leave my port in because she thinks I will need additional chemo. My surgery is scheduled for 12/19/18 and she states she is sure my lymph nodes will be positive and she is going to take them all. I have been distraught over this. When I talked to all the TNBC ladies in my support group they had different oncologists and they all got the carboplatin. I meet with my oncologist on Monday but I’m upset. When I requested it she said she could add after surgery which I am not sure what the benefit would be after surgery.

I think they will recommend XRT and the Chemo pill as well for me.

I’m trying to stay positive and trusting in the Lord.

I met a lady at my doctors office yesterday and she told me she is a 14
Year survivor of TNBC. She said she was Dx and had surgery first back in those days and she said they did double mastectomy and removed all her lymph nodes and two of them were positive.

I am just praying for divine intervention on my surgery date.

CJ
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2018 at 7:31pm
CJ,
I got second opinion and started the Xeloda first. Will do radiation after the 6 months of Xeloda. I switched oncologist to one who specializes in TNBC at The James(Ohio State) and he felt since I had the positive nodes it was better to do the Xeloda first. He brought my case to the tumor board at OSU and all agreed.

Stay strong and positive. Will keep you in my prayers for a safe surgery and good outcome.

JDM4

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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2018 at 11:16pm
Thank you so much
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2018 at 8:46am
Also JMD4

Did they offer you the Carboplatin after surgery or just the pill then XRT
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Jdm4 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2018 at 10:16am
They just said Xeloda. Said there wasn’t enough data for nonBRCA positive patients to prove effective.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2018 at 5:00pm
That's incorrect. Trials have shown that the non brca patients actually benefited more with the addition of Carboplatin since Adriamycin & Cyclophosomide are also considered DNA damaging agents, n for some reason using them first in the neoadjuvant setting for brca carriers creates an unexplained ceiling effect which prevents more DNA damaging for those patients. That does not apply tho for the non carrier patients.

Edited by rstar - Dec 02 2018 at 7:37am
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Jdm4 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2018 at 5:12pm
What about post mastectomy? I am taking Xeloda. Had done AC/ & Taxol in the neoadjuvant setting.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2018 at 7:48am
Tricky question..it could be that the effect is seen more when combined with taxol, despite the brca status. The problem is that till this day no one really knows which subgroup of patients (besides brca) truly benefits from Carboplatin. I think its safer to do it anyway..

Edited by rstar - Dec 02 2018 at 5:19pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2018 at 11:28pm
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 James123 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2018 at 1:14pm
Donna
What about Carboplatin after surgery.  I am still going to push for it.  Are there survivors with this type of outcome and cancer that didn’t get the carboplatin?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 1:49pm
Hello JDM4,
I was DX with TNBC in Oct. 2017 and was also treated at The James/Stephanie Speilman Breast Center. My tumor was very large & I had positive lymph nodes. Had neoadjuvant chemo, mastectomy, more chemo and then radiation. My tumor shrank some after chemo but was still around 6cm at surgery. Surgeon did get clear margins and removed all my nodes, with two being positive.
I have asked my Oncologist several times about Xeloda but she has not given me any answer. Supposedly since I also was on a clinical trial with my first chemo, she has to confer with the clinical trial doctors. I have been waiting 8 weeks for an answer and am starting to get very frustrated.
May I ask who your doctor at The James is?


Thanks,

Beth
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 2:20pm
Dr Daniel Stover and he is awesome!
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