New Posts New Posts RSS Feed - Positive nodes after neoadjuvent chemo
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Positive nodes after neoadjuvent chemo

 Post Reply Post Reply Page  <12
Author
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 2:27pm
Beth 
What if I may ask what Chemo did they give you after surgery?
Back to Top
Jdm4 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 01 2018
Status: Offline
Points: 9
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jdm4 Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
Beth TNBC View Drop Down
Newbie
Newbie


Joined: Jan 23 2018
Location: Ohio
Status: Offline
Points: 24
Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2019 at 11:03am
I had CYTOXAN and ADRIAMYCIN post surgery and before radiation.
Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2019 at 11:19am
I am meeting with my oncologist today to find out.  Iíll let you know what they recommend 
Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post 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 
Back to Top
rstar View Drop Down
Groupie
Groupie


Joined: Nov 26 2015
Status: Offline
Points: 41
Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2019 at 9:11pm
I completely understand the purpose of the trial, are you happy with the decision tho?
Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post 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 
Back to Top
rstar View Drop Down
Groupie
Groupie


Joined: Nov 26 2015
Status: Offline
Points: 41
Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post 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.

Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13002
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post 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?
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13002
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 982
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2019 at 9:43am
well I tried to private message Steve 
Back to Top
TKTK View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 14 2018
Location: GA
Status: Offline
Points: 22
Post Options Post Options   Thanks (0) Thanks(0)   Quote TKTK Quote  Post ReplyReply Direct Link To This Post 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!



Edited by TKTK - Jan 12 2019 at 11:03am
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13002
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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.



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

Back to Top
TKTK View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 14 2018
Location: GA
Status: Offline
Points: 22
Post Options Post Options   Thanks (0) Thanks(0)   Quote TKTK Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
James123 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 22 2018
Location: Kentucky
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post 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 
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13002
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
 Post Reply Post Reply Page  <12
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.