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cookie54
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Joined: Oct 24 2020
Location: New Jersey
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Topic: Newly diagnosed metastatic tnbc 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.
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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
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Joined: Dec 09 2021
Location: USA
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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
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Joined: Oct 24 2020
Location: New Jersey
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Points: 78
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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.
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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
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Joined: Dec 09 2021
Location: USA
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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
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Joined: Oct 24 2020
Location: New Jersey
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Posted: Aug 11 2022 at 8:57pm |
Thank you Penny, appreciate your kind words.
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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
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Joined: Dec 28 2016
Location: Sacramento
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Points: 197
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Posted: Aug 10 2022 at 9:15pm |
God Bless you all as you go through this.
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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
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Joined: Oct 24 2020
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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.
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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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Miri
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Joined: Mar 15 2022
Location: Jamaica
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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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TNBC Fighter
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Joined: Dec 09 2021
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Posted: Dec 09 2021 at 4:54pm |
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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SagePatientAdvocates
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Joined: Apr 15 2009
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Points: 4748
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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
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Jean17
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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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BridgettAnn
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Joined: May 05 2021
Location: N Augusta, SC
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Posted: May 06 2021 at 5:57pm |
Thank you so much for the book suggestion and kind words!
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cookie54
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Joined: Oct 24 2020
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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.
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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
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Joined: May 05 2021
Location: N Augusta, SC
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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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