Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) — Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 06:23PM

Posted on: Mar 31, 2016 06:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/22/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Dec 16, 2022 02:27AM bsandra wrote:

Hello dear flo80!:) Saulius

Since May2021: NED. Mar2021: local axilla LN recurrence.Sep2019-Mar2021:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+, IHC Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy; Mastectomy (Left) Radiation Therapy 9/9/2019 Whole breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal
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Dec 21, 2022 07:50PM traveltext wrote:


I know everyone here is going through different experiences post diagnosis with their treatments, but I hope everyone can get some peace into their personal lives at this time of year. HeartRod

There's a link at the end of my story on the recent Our MBC Life Podcast on Breast Cancer and Humor.

NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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Dec 23, 2022 12:42AM lw422 wrote:

It was two years ago that I noticed the pink "bruise" on my right breast and my life turned upside down. I could never have made it through the nightmare without all of you, walking the scary path with me. I will forever be grateful for you all.

Merry Christmas/Happy holidays to all of you, and may you be blessed with good health!

Dx IBC, ER-/PR+, HER2-
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Dec 24, 2022 07:05PM lw422 wrote:

From the Facebook page of Dr. Naoto Ueno, former Director of the MDA IBC Clinic, announcing a promising clinical trial for a new treatment of triple negative IBC...

"Dr. Xiaoping Wang Lan Phi Toshiaki Iwase Takeshi Semba Trịnh Vạn Ngữ and our colleagues have dissected the mechanism of how EGFR regulates the immunosuppression status (more resistance to immunotherapy) of triple-negative IBC. We are now conducting a clinical trial of combining immunotherapy plus anti-EGFR antibody with chemotherapy. We hope that this will be a game-changer treatment for patients with IBC. Published in Science Advances.The trial link is

Brief Summary:

This phase II trial tests whether panitumumab and pembrolizumab in combination with standard of care chemotherapy before surgery (neoadjuvant) works to shrink tumors in patients with stage III-IV triple negative breast cancer. Panitumumab is a monoclonal antibody that may interfere with the ability of tumor cells to grow and spread. Immunotherapy with monoclonal antibodies, such as pembrolizumab, may help the body's immune system attack the cancer, and may interfere with the ability of tumor cells to grow and spread. Chemotherapy drugs, such as paclitaxel, carboplatin, doxorubicin, and cyclophosphamide work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. Giving panitumumab and pembrolizumab in combination with neoadjuvant chemotherapy may kill more tumor cells in patients with triple negative breast cancer."

Dx IBC, ER-/PR+, HER2-
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Dec 26, 2022 12:47PM mara51506 wrote:

TT, hope you and everyone else here had a good holiday and happy boxing day to those who celebrate as well.

I had an early dinner with DB and SIL and spent Christmas at home, watch a few movies, one good one was Glass Onion, A Knives Out mystery with Daniel Craig as Benoit Blanc. Think modern day Agatha Christie or Hercule Perot, good mysteries and I highly recomend the first Knives Out movie and the Glass Onion. Quite enjoyable.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal; Mastectomy; Mastectomy (Right) Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Dec 31, 2022 11:47PM - edited Dec 31, 2022 11:49PM by mamacure

Happy New Year everyone! Appreciate you all. Thanks LW for keeping us updated on the latest clinical trial. Those movies sound good Mara, good to hear from you TT. Precious Becky I try to eat healthy but some times slip up. Green tea every morning, turkey tail supplement & Prothrivers Wellness flavonoid everyday. My back pain comes & goes. Seeing a new MO later this month for my next follow up. Hello Flo

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture

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