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 11:23AM

Posted on: Mar 31, 2016 11:23AM

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 10/21/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/3/2016 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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Aug 4, 2017 09:39PM traveltext wrote:

Meadow, I think we are unanimous in thinking your cute caravan has a huge wow factor.

Mini, woohoo for the good ecg, coming up for a year on the Kadcyla.

I used to write travel guide books for Fodors and other publishers, so writing a book on my cancer "journey" would be a hoot. Perhaps call it something like: Fear and Loathing in BCville.


Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery
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Aug 13, 2017 09:21AM amarantha wrote:

Meadow, I am in love with your caravan, what a beautiful job you have done restoring it. My husband will be too jealous, so I am not showing him the photos !!!

IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Aug 16, 2017 02:37PM meadow wrote:

You guys are so sweet, thanks! So, today is my 4 year Cancerversary, 4 years ago I was diagnosed with IBC. I did not know if I would see another year. Now heading strongly into year 5! I am blessed beyond words to be here with you all, my dear family of support. Thank you all so much for the constant support, the humor, the wisdom, the soft spot to land. Love you all.

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/25/2013 AC + T (Taxol) Radiation Therapy 2/10/2014 Breast, Lymph nodes Surgery 1/14/2017 Reconstruction (Left)
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Aug 16, 2017 03:14PM mara51506 wrote:

Great to hear Meadow! Five years sounds great to me as well.

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 4/21/2015 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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Aug 16, 2017 04:08PM - edited Aug 17, 2017 03:48AM by Kicks

Ya'll better get your Scotty up here to He Sapa (Lakota for Black Hills) so we can get together. 4 yrs ago this month I was where you are now - 4 yrs post DX. Now 8 yrs post DX so you have to do another 4 (at least).

(edited for typo - He Sapa is the Black Hills - not Black Bills as I typed. Some may have seen it written as Paha Sapa but that is incorrect. Sapa is black and paha is a single hill/mountain, he is a group of hills/mountains so in Lakota He Sapa is correct for the Hills. I'm taking Lakota language classes.)

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Aug 16, 2017 05:48PM meadow wrote:

You got it! I would love to make that trip!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/25/2013 AC + T (Taxol) Radiation Therapy 2/10/2014 Breast, Lymph nodes Surgery 1/14/2017 Reconstruction (Left)
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Aug 18, 2017 06:14AM Valstim52 wrote:

Yay Meadow. Kicks add me to the trip. When I found this thread I didn't think I'd make a year. Then I saw other TN's surviving and I thought, ok I can too. So far so good.

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/20/2016 Whole breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Aug 20, 2017 10:35AM IntegraGirl wrote:

Hi there,

I'm new to the group but have been lurking for awhile. I have TN IBC and recently learned that chemo (finished Aug 1) wasn't completely successful. I've been feeling pretty discouraged about the whole thing so it's good to read posts from others who have TN IBC, like Meadow, and carrying on.

Dx 1/20/2017, IBC, Left, 2cm, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 2/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 8/30/2017 Mastectomy: Left, Right Chemotherapy 10/1/2017 Xeloda (capecitabine) Radiation Therapy 11/5/2017 Breast, Lymph nodes, Chest wall
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Aug 20, 2017 12:48PM traveltext wrote:

Welcome IntegraGirl.

Valstim, Meadow, MoreShoes and Amaranthra are all TNs contributing here, but first you have to scroll up and say "wow" to Meadow's stunningly renovated caravan Smile


Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery
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Aug 20, 2017 06:00PM IntegraGirl wrote:

I do love Meadow's awesome caravan:). I'm a fellow RV'er but mine isn't nearly that fabulous

Dx 1/20/2017, IBC, Left, 2cm, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 2/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 8/30/2017 Mastectomy: Left, Right Chemotherapy 10/1/2017 Xeloda (capecitabine) Radiation Therapy 11/5/2017 Breast, Lymph nodes, Chest wall

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