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Newly diagnosed metastatic tnbc

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13815
Printed Date: Aug 08 2022 at 10:07pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com


Topic: Newly diagnosed metastatic tnbc
Posted By: BridgettAnn
Subject: Newly diagnosed metastatic tnbc
Date Posted: May 05 2021 at 3:08pm
Where to go from here? I am 47 years old.  Orginally diagnosed with tnbc November 2019.  Treated very aggressivly at my request, chemo, DMX, radiation, capecitabine, hysterectomy (just in case)...and I go to a routine Scan to find mets in my femur, hip, and spine.  Devestated doesn't begin to cover it.  I have an appointment early next week to discuss options and clinical trials.  I need to hear something positive from someone in the same boat.  *SCARED*



Replies:
Posted By: cookie54
Date Posted: May 06 2021 at 5:47pm
Hi BridgettAnn , Sorry you are dealing with a recurrence, I know how devastating and scary it can be! I was diagnosed with tnbc in 8/2016 Stage 1 and  now a recurrence in 2020. I don't have bone mets I had recurrence in the axillary nodes and chest wall. I just wanted to reach out to you for support and let you know you are not alone. I'm sure one of our tnbc sisters will pop on here with information for you.

I'm glad you have an appointment next week, you will feel a little better when you have your plan of attack. Wishing you faith ,hope and strength as you move forward in treatment.
“Hope Is Then Only Thing Stronger Than Fear.” via... | Official Tumblr of To Write Love on Her Arms.


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8/2016,IDC,StageIA, Gr3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX implants,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca, surg
Xeloda2/21-7/21




Posted By: BridgettAnn
Date Posted: May 06 2021 at 5:57pm
Thank you so much for the book suggestion and kind words!


Posted By: Jean17
Date Posted: Nov 14 2021 at 8:04am
Hi BridgettAnn,

I was recently diagnosed with metastatic breast cancer. It has spread to the lungs and liver. I am triple negative and just beginning my journey. I hope that you are doing well.


Posted By: SagePatientAdvocates
Date Posted: Dec 03 2021 at 8:43pm
Dear BridgettAnn,

I am sorry I missed your post some months ago. I know why I missed it and it was very understandable and personal but still sorry I did.

I don't know where you are in your treatment plan but please feel free to send me a PM and I will send you my contact info or you can write me at-

info@sagepatientadvocates.org

I am not a medical professional and will not give you medical advice but I have a suggestion for you fairly close to your home, I believe.

warmly,

Steve


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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: TNBC Fighter
Date Posted: Dec 09 2021 at 4:54pm
Originally posted by BridgettAnn BridgettAnn wrote:

Where to go from here? I am 47 years old.  Orginally diagnosed with tnbc November 2019.  Treated very aggressivly at my request, chemo, DMX, radiation, capecitabine, hysterectomy (just in case)...and I go to a routine Scan to find mets in my femur, hip, and spine.  Devestated doesn't begin to cover it.  I have an appointment early next week to discuss options and clinical trials.  I need to hear something positive from someone in the same boat.  *SCARED*

Wow, so sorry to hear this. My friend was originally diagnosed with Stage 4 TNBC 2 years ago.  She had started with 2 lumps in the breast. Started with Immunotherapy and taxol combo. Inital Scan showed spread on bone in ribs. Later moved on to another IV chemo, then moved to surgery to remove 2 lumps and 27 lymph nodes. After the masectomy, on to radiation (not fun). Then onto a chemo pill (Xyloda) and now on another IV chemo. Never fun, she is experiencing some headaches and nausea lately. The positive, over 2 years later, she is still pretty active and going strong, although very tired at times. The negative, it's terminal and requires treatment for life. Hang in there, at times it can get very tough...


Posted By: Miri
Date Posted: Aug 04 2022 at 10:58am
Hi...Im desperately hoping to see posts from persons in 2022 who are thriving and surviving mets TNBC because i discovered mets in feb 2022. Have spread to chest wall and one node in supraclavicular area of the neck and one nodule in pleura of lung. Everything i am reading says prognosis is poor and less than one year, but i feel good am still workign and active. failed xeloda so now on Trodelvy x 4 doses so not sure if it is working. Will do radiation in a few weeks. 




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