Go To Main TNBC Website


  New Posts New Posts RSS Feed - New Member
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

New Member

 Post Reply Post Reply
Author
TinaM View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 27 2018
Location: NY
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote TinaM Quote  Post ReplyReply Direct Link To This Post Topic: New Member
    Posted: Jan 27 2018 at 9:26pm
Newbie here, TNBC 2B, 3 lumpectomy, chemo, mastectomy, reconstruction. Recent MRI for unrelated issue found 1cm lesion on T1. Terrified, anyone with similar experience that can give me some encouragement
Back to Top
Asovey View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 160
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 12:18pm
Hi Tina:  Welcome to the most supportive group on the internet.  You will find a wealth of information here!

I was just diagnosed in November of 2017 and so I am in Chemo right now.  Stage 2 or 3 (they aren't sure).  I am doing AC right now and then on to Taxol/Carboplation.  My mass was rather large but I am glad to say it is shrinking a lot.  After Chemo will be surgery and depending on whether or not I have a pCR, there are different options.

My best advise is to get a second opinion!  Once I was out of the fog of my diagnosis, my kids convinced me this was necessary.  As you know, TCNB is not your run of the mill breast cancer.  I got a second opinion from Dr. Tiffany Traina at Slone Kettering in NYC.  This was the best decision I have ever made in my life!

We have a good brand new cancer center here in Lansing, Michigan, but they do not have a dedicated breast cancer department.  I took the plan that was developed here and took it with me to see Dr. Traina.  She agreed it was a good "basic" plan, but not a cutting edge plan.  I wanted cutting edge.  She made quite a few additions and did some more testing.  I then brought her cutting edge plan back home with me and my local MO agreed to follow it.  I go back to Slone in late June.

Have you had a biopsy done on the newly found lesion?  

Encouragement is the name of the game here.  You will find many who are survivors of more than one TNBC fight.  TNBC has made so many new inroads in the past few years!
The first thing Dr. Traina said to me was that TNBC is CURABLE!  I hold that thought in my brain and heart every day.

Please keep us all up to date on how you are doing!  Feel free to text me at 517-231-2515 if you want to chat.  Hand in there!

Ann
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 470
Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 4:52pm
Tina, 
I am so sorry you have to be on this sucky journey. Don't go jumping to conclusions just yet on your T1, you said MRI, I have had one or to things show on MRI then PET was negative.  Have you scheduled a PET scan yet?
As Ann says Dr. Traina  is one of the top for TNBC in the country. A second opinion is always a wise choice.
We are here for you! bring it all.
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
TinaM View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 27 2018
Location: NY
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote TinaM Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 8:00pm
Hi Ann,
Thank you so much for responding. I am so grateful to have found TNBCF, can not tell you how comforting to find those that truly understand.

Sorry you have to go through ACTC, I had same treatment. Ironically, Tiffany Traina is my ONC, could not have gotten through this without her. As my husband said, why go for second opinion when you're seeing the best, I am so fortunate to live near MSKCC.

Will talk to Dr. Traina tomorrow as to how to proceed, assuming biopsy may be next step. Getting ahead of myself but preparing just in case (yes I'm one of those planners) found a great neurosurgeon at MSKCC who specializes in spine metastasis, will see what Dr Traina advises.

I am also consulting with Linda Vahdat ONC who was at Weil Cornell but now with MSKCC. Tried to get into her third trial but I did not qualify. My understanding is MSKCC is very strict about not using drugs not approved science based, so I was referred to Dr Rosenberg in Boca Raton, Fla. My visits are by Skype or phone. I am taking an "off trial off label" copper depletion drug called Tetrathiomolybdate, TM for short.   It has very little side effects, worst being anemia. You can read about the research on line, sounds promising. Unfortunately TM is not FDA approved for treatment of TNBC. It is a drug used for copper disorder, Wilsons Disease, and insurance does not cover. It is a compounded drug and not readily available, I mail order from a pharmacy in Wisconsin. Wonder if anyone else is on TM and what their experience has been.

Oh and almost forgot, having a biopsy of uterus for vaginal spotting...you just can't make this stuff up!

Will keep in touch and please do the same, so very appreciative.

Tina
Dx 80% TN 20% POS, 2B-3,BRCA neg, sentinel node neg., three LX w/no clear margins lymphovascular invasion, chemo 4 AC 4 TC, single Mx, RT not rec., reconstruction
Back to Top
TinaM View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 27 2018
Location: NY
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote TinaM Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 8:02pm
Hi Natalie,

Thanks for the response. Just posted a lengthy reply to Ann. No PET scheduled yet, will speak with Dr. Traina tomorrow.

Grateful for the support and encouragement.

Tina
Dx 80% TN 20% POS, 2B-3,BRCA neg, sentinel node neg., three LX w/no clear margins lymphovascular invasion, chemo 4 AC 4 TC, single Mx, RT not rec., reconstruction
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 9:09pm
Hi TinaM,

There has been lots of discussions in the past about the copper depletion trial.  I think it's still in Phase II stage and not sure when Phase III of the trial will open up.  Here's a link from past threads on this subject.  Many of us were/are very interested in this research and trial results.


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
TinaM View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 27 2018
Location: NY
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote TinaM Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 10:20pm
Hi Donna

Not sure what stage phase II is in but Dr Linda Vahdat said results are promising. She was recruiting patients for phase III and working on funding. When I initially saw Dr Vahdat she was at Weil Cornell, she is now at MSKCC and Norwalk Hospital. Attempted to get in phase III but it was solely for those with metastasis. She referred me to her colleague in Fla who is treating me off trial with TM. Unfortunately nothing is covered by insurance. If anyone is interested in her research or results I would think they can call for a consult or second opinion appointment. You can access some information about her research, google: Linda Vahdat and TM

Thank you for the link, will check it out.

Tina

Dx 80% TN 20% POS, 2B-3,BRCA neg, sentinel node neg., three LX w/no clear margins lymphovascular invasion, chemo 4 AC 4 TC, single Mx, RT not rec., reconstruction
Back to Top
Asovey View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 160
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2018 at 6:33am
Tina: Good luck with your new fight! You sound like a very courageous woman!

I saw you were from New York and wondered how close you were to MSKCC. How lucky you are to,have Dr Traina as your oncologist! Your husband is right; no need for a second opinion when you have the best!

Please keep in touch!

Ann
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.