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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 03:23PM

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 7/21/2015 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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Nov 23, 2021 02:38PM LW422 wrote:

Mamacure--I found these instructions about Mepitel that you might find helpful... https://www.rvh.on.ca/wp-content/uploads/2021/05/M...

Interesting because the rad techs removed the film after my last treatment and this says to leave it on for 2 weeks! These instructions don't seem to indicate that any weekly changing is necessary so not sure why my RO had them do so. Hmmmm.

I'm glad you're doing well. Happy Thanksgiving to you!

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Nov 24, 2021 06:19PM ang7894 wrote:

Hi , All a little update :: turned out i have an infection they did a mammo and an ultra sound and i was good ! so a few weeks of antibiotics they are saying thank you to all that responded to my post. for all of you may you have healing and future good vibs coming your way !!

All chemo done!! last one was April 30th 2012 radiation Done!! Last one was June 22nd 2012 tamox started on Sept 29th 2012 for 5 years!!! Herceptin until March 12th 2013 All Done!!! ER+ 68% PR+ 96% HER2NEU + 3 Angie Dx 12/1/2011, IDC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/22/2012 AC + T (Taxol) Targeted Therapy 3/18/2012 Herceptin (trastuzumab) Radiation Therapy 5/7/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012
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Nov 24, 2021 06:26PM LW422 wrote:

ange7894--Great news! Thanks for getting back to us, and happy Thanksgiving.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Nov 25, 2021 05:15AM mara51506 wrote:

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: Sentinel; 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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Nov 25, 2021 06:01PM mamacure wrote:

Ang7894, what a relief! That is great news!

LW, thank you for the Mepitel link that is exactly what I needed!

Happy Thanksgiving everyone

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Nov 26, 2021 07:27PM ang7894 wrote:

Thank you all Happy Holidays !!!

All chemo done!! last one was April 30th 2012 radiation Done!! Last one was June 22nd 2012 tamox started on Sept 29th 2012 for 5 years!!! Herceptin until March 12th 2013 All Done!!! ER+ 68% PR+ 96% HER2NEU + 3 Angie Dx 12/1/2011, IDC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/22/2012 AC + T (Taxol) Targeted Therapy 3/18/2012 Herceptin (trastuzumab) Radiation Therapy 5/7/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012

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