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Newly diagnosed metastatic tnbc

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BridgettAnn View Drop Down
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    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*
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post 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.
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets



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BridgettAnn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BridgettAnn Quote  Post ReplyReply Direct Link To This Post Posted: May 06 2021 at 5:57pm
Thank you so much for the book suggestion and kind words!
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Jean17 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jean17 Quote  Post ReplyReply Direct Link To This Post 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.
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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
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TNBC Fighter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC Fighter Quote  Post ReplyReply Direct Link To This Post 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...
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Miri View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Miri Quote  Post ReplyReply Direct Link To This Post 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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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2022 at 6:39pm
Hi Miri, I was just diagnosed with lung mets 6/22 and currently on Xeloda and Keytruda. As you can see I am new to Stage IV but wanted to respond for support. Also I am on other breast cancer forums and there are women with MTNBC that are surviving past one year. Did you ask your oncologist about the stats as they can give you a better idea .Glad you are feeling well and working. I totally understand how you feel and I wanted to let you know you are not alone. Hugs and good vibes coming your way.
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets



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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2022 at 9:15pm
God Bless you all as you go through this.  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2022 at 8:57pm
Thank you Penny, appreciate your kind words.
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets



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TNBC Fighter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC Fighter Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2022 at 5:28pm
Well, here's some encouragement for all of you here...My wife's initial diagnosis was Stage IV TNBC, the death sentence, back in 2019. Remembere it like yesterday...Here we are in August 2022, my wife stopped all treatment in May, and last 2 scans back to back show NED...Doctors are shocked. Sticking to a decent diet and lots of exercise. Swimming, walking, biking, etc. Keep the faith. Never lose hope. Stay vigilant.
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2022 at 9:25pm
TNBC Fighter, Wow that is wonderful! So happy for your wife and your family. Thanks so much for sharing I truly needed some hope. I am new to Stage IV with a couple of lung mets and wonder at times is it possibly to stay here without progression. They consider my tumor burden low so that's what I pray for. Do you mind me asking if your wife had a small amount of metastasis? She had an amazing response to her treatment and with MTNBC that is truly a blessing. Gives all of our MTNBC sisters much hope with this sometimes daunting disease. We have to try to stay active and live our best lives! May God continue to bless your wife and your family.
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets



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TNBC Fighter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC Fighter Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2022 at 9:26am
Thanks Cookie. She had very large tumors in the breast, measuring in CM, not MM... they started her on traditionaln AC/T, but I think the immunotherapy really helped her...after about a year we begged the doctors to surgically remove the breast...they relunctantly agreed...they did not want to operate...so she had a mascetomy and they removed 2 tumors plus 26 lymph nodes, clean margins. She had bone metastatis on her rib and pelvic area...which is miraculously gone for now. She moved to Xyloda and then onto Gemba, which really helped her. After 2 years started getting neuropathy, but amazingly last 2 scans show nothing. Just enjoying every day, tomorrow is not guaranteed for anyone. My wife has been getting care at MSK, they have been really good to us. Keep the faith Cookie, at times it seems daunting, but never give up.
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2022 at 10:45am
So glad to hear you both are an advocate for your wife's care. It's so important to do your research and push for what you believe in! Agree, none of our tomorrow's are guaranteed.
Your wife is in excellent care. I am treated through University of Penn and also in conjunction with Dr Traina at MSK. I feel fortunate to have excellent care at my fingertips.
Wishing her continued health for many years to come.
Thanks for the encouragement and your response.
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets



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