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Positive nodes after neoadjuvent chemo

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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13431
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Topic: Positive nodes after neoadjuvent chemo
Posted By: Jdm4
Subject: Positive nodes after neoadjuvent chemo
Date 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 didnít 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 donít 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.



Replies:
Posted By: rstar
Date 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.


Posted By: Lisa s
Date 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?


Posted By: Jdm4
Date 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!


Posted By: rstar
Date 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


Posted By: Jdm4
Date Posted: Nov 04 2018 at 8:42am
Thank you for commenting on Lisaís comment. Will be pushing for the Carbo. I did see there were some clinical trials with Carbo. Looking into them.


Posted By: rstar
Date 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.


Posted By: Kellyless
Date 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!


Posted By: James123
Date 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 Iím 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.

Iím 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


Posted By: Jdm4
Date 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



Posted By: James123
Date Posted: Nov 30 2018 at 11:16pm
Thank you so much


Posted By: James123
Date Posted: Dec 01 2018 at 8:46am
Also JMD4

Did they offer you the Carboplatin after surgery or just the pill then XRT


Posted By: Jdm4
Date Posted: Dec 01 2018 at 10:16am
They just said Xeloda. Said there wasnít enough data for nonBRCA positive patients to prove effective.


Posted By: rstar
Date 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.


Posted By: Jdm4
Date Posted: Dec 01 2018 at 5:12pm
What about post mastectomy? I am taking Xeloda. Had done AC/ & Taxol in the neoadjuvant setting.


Posted By: rstar
Date 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..


Posted By: 123Donna
Date Posted: Dec 02 2018 at 11:28pm
Adding Carboplatin Increases PCR

http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html" rel="nofollow - http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.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



Posted By: James123
Date 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 didnít get the carboplatin?


Posted By: Beth TNBC
Date 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


Posted By: Jdm4
Date Posted: Jan 03 2019 at 2:20pm
Dr Daniel Stover and he is awesome!


Posted By: James123
Date Posted: Jan 03 2019 at 2:27pm
Beth 
What if I may ask what Chemo did they give you after surgery?


Posted By: Jdm4
Date Posted: Jan 03 2019 at 2:35pm
I am doing Xeloda currently.  Just started round 3 of 8.  Will finish at end of April.  Will do radiation after and hoping to do clinical trial with radiation and would be in the Keytruda study.  Forget the name of the study.


Posted By: Beth TNBC
Date Posted: Jan 07 2019 at 11:03am
I had CYTOXAN and ADRIAMYCIN post surgery and before radiation.


Posted By: James123
Date Posted: Jan 07 2019 at 11:19am
I am meeting with my oncologist today to find out.  Iíll let you know what they recommend 


Posted By: James123
Date Posted: Jan 07 2019 at 1:12pm
Hi Beth

I just found out Iím not getting additional Chemotherapy.  I am being referred to a clinical trial at Vanderbilt University that uses Carbo vs Xeloda as adjutant treatment 


Posted By: rstar
Date Posted: Jan 07 2019 at 9:11pm
I completely understand the purpose of the trial, are you happy with the decision tho?


Posted By: James123
Date Posted: Jan 07 2019 at 9:45pm
Iím okay with it.  She said if I decide against the study then I can get the Xeloda.  So Iíll decide after I talk with Vanderbilt Dr  Meyer.  My oncologist says I canít get both but the study would be best because itís between the two.  I donít know which one would get the better survival rate but I plan to talk to them.  Itís starts after I complete XRT.  I met with Radiation Oncologist today and she was very uplifting about my radiation treatments so all in all I am pleased.   I wish I could have received the carboplatin before surgery but I didnít so I will try and get in this study.

Thank you 


Crystal 


Posted By: rstar
Date Posted: Jan 07 2019 at 11:12pm
I wish your onc could have given you both cuz I know it is doable but at least you'll be getting something for prevention. Its very difficult to say which one would work better..it's true that platinum agents work best with brca carriers but that's not always the case. Some fast growing cancer with the basal phenotype respond very well to platinum agents, regardless of brca status. It's worth checking with your onc what he/she thinks about this hypothesis.



Posted By: James123
Date Posted: Jan 07 2019 at 11:27pm
Well I think when I get to Vanderbilt that is one of the questions I will ask them


Posted By: 123Donna
Date Posted: Jan 08 2019 at 6:56am
You might ask if there is a test to see which chemo your tumor may respond to better? 


-------------
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



Posted By: James123
Date Posted: Jan 09 2019 at 8:40am
rstar or Donna


Do either of you know the name of a specialist in TNBC at MD ANDERSON?


Posted By: 123Donna
Date Posted: Jan 09 2019 at 8:49am
James123,

You may want to send Steve (SagePatientAdvocates) a private message.  He has contacts at MD Anderson and could possibly suggest someone for you.  The onc I saw when I went to MD Anderson for a second opinion is no longer practicing. 


-------------
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



Posted By: Kellyless
Date Posted: Jan 09 2019 at 9:35am
There's more than one. The only way I got in with one was  Steve made a Herculean effort to get me in, in the short window of time I had to start chemo. I see Dr.Vincente Valero, my husband and I adore him! Trying to get an appointment on my own it would've been 6 months. When I told my Dr. I had an appointment with him for a second opinion she was thrilled! She was excited to get to work with him. I went with the chemo scheme he suggested, and agreed to return every three weeks to MDA for tests and hi res ultrasound - it's only a 4 hour drive and my husband is the best SO in the galaxy Heart Dr. Valero and my local onc stayed in close contact, it made me feel......hopeful, having not only my local oncologist that is wicked smart and _knows_ me, but also a world famous breast cancer Doctor in the world's best cancer hospital. The icing on the cake was that Steve was at MDA just by chance for other patients he works with a couple times, including my first appointment. He would join us for the appointments - he was so helpful! Especially toward the end when I was so so desperately sick. He spoke up for me, he emphasized to an unusually harried Dr. Valero how sick I was....He was there when I needed him most. So yeah, Steve is our guardian angel here, he's helped save many of our lives. I would trust him with the lives of every single person I love, he's truly a gift. 

-------------
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!


Posted By: James123
Date Posted: Jan 09 2019 at 9:43am
well I tried to private message Steve 


Posted By: TKTK
Date Posted: Jan 12 2019 at 11:02am
Just reading through these posts makes me worried that I did not get Carboplatin. Really do not want to deal with recurrence as anyone in my situation would wish.

After gene testing, I am BRCA- but they found RAD51D gene mutation which is known to be related to Ovarian cancer and recently has been identified to be related to TNBC. So my MO switched my plans for a lumpectomy and radiation to a double mastectomy, with plans for an oophorectomy in the future.

I only went through AC and Taxol treatments but did get good response (the multi nodule tumor of 5cm shrunk to 0.5cm after AC). Have surgery next month, so we'll find out then if it actually has all died out. My surgeon said she was going to remove a few lymph nodes as well to check. Before we started chemo, we did do a biopsy of one of the two swollen lymph nodes but did not find cancer in it at the time.

Extremely thankful for the positive situation I'm in, but still afraid for any chance of recurrence.

@Kellyless, if you don't mind my asking, do you and/or your doctors think your recurrence after 7 years was a recurrence of the same cancer or was it an entirely new development? Knowing how fast TNBC grows, wondering if your first treatment did its job and the recurrence was a new development. Carefully asking since you are NED! Yay!!! 
That said, if mine does come back, I'll fight it off like you did!



-------------
DX 8/27/2018 TN, ki67=72%, 3 nodules lumped together measuring 5cm, 0/1 nodes, AC & Taxol 4 rounds each, RAD51D+, 2/11/2019 BMX with no reconstruction, PCR


Posted By: 123Donna
Date Posted: Jan 12 2019 at 11:17am
James123,

Did you hear from Steve?

TKTK,

In another thread I saw that you said they may not recommend radiation after your surgery.  You might want to look at this thread prior to meeting with your radiation oncologist.

http://forum.tnbcfoundation.org/radiation-and-possible-benefits-of-rni_topic10437.html" rel="nofollow - http://forum.tnbcfoundation.org/radiation-and-possible-benefits-of-rni_topic10437.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



Posted By: TKTK
Date Posted: Jan 12 2019 at 11:27am
@123Donna Thank you so much for the information. Looks like I definitely should be looking into radiotherapy even after mastectomy. Learning more and more that I can't just rely on the doctors to know what would be best for me. 

-------------
DX 8/27/2018 TN, ki67=72%, 3 nodules lumped together measuring 5cm, 0/1 nodes, AC & Taxol 4 rounds each, RAD51D+, 2/11/2019 BMX with no reconstruction, PCR


Posted By: James123
Date Posted: Jan 12 2019 at 11:39am
yes I heard from Steve and he is trying to get me in to see dr Valero at MD ANDERSON 


Posted By: 123Donna
Date Posted: Jan 12 2019 at 11:46am
TKTK,

The one thing I learned from the strong women in this group when I first joined was that we have to advocate for ourselves and keep asking questions until we are satisfied.  We only get one chance at fighting this beast the first time in hopes that it never returns.  Keep us posted on what you find out after your surgery.  Wishing you the best.  Stay strong!

James123,

So glad you heard from Steve.  Like Kelly said, he is our guardian angel and I have the utmost respect and love for this man.  He helped me get into MDA back in 2011 when I was needing a second opinion and getting the run around.

 


-------------
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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