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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.

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Posted on: Mar 31, 2016 03:23PM

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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Aug 20, 2017 10:09PM traveltext wrote:

OK, you're in the club IG. All questions welcome.


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. 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 Hormonal Therapy Surgery Surgery Surgery Surgery
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Aug 21, 2017 11:15AM Valstim52 wrote:

Integragirl. Hate you are here, but welcome, this is the best place. Most TN's don't get what is called a pcr. Don't despair (easier said than done) because treatment is a total process, chemo, surgery if possible and radiation is the mop up of cells that still may be lurking. Most of us have had sucess with this treatment. Yes we are counting months and years, but the important thing is we are still around to count. I'm still a newbie but coming up in November on 2 years. When first dx'd, I didnt think I'd make it to surgery.

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 6/21/2016 Whole breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Aug 23, 2017 05:50PM meadow wrote:

Welcome Integragirl! TN IBC can be scary, if you read the stats particularly. So don't to that! The stats quoted are based on older data, and IBC is changing as treatments are better, chemo is more specific, treatments in general are working at giving people their good health back. Like Val said above, treatment is a total process. are you scheduled for surgery and radiation? This one, two, three punch is really necessary for TN IBCers. Do not get discouraged, stay in a fighting, positive frame of mind. Love Heals. You can do this.

TT, you are so funny! You tickle me to no end!

Come on Val, let's go see Kicks!

Scwilly, Noor ,Moreshoes, Mini, Mara, Amarantha, and all who post here, lurk here, Thinking of you all. (((hugs))) to all.

Did everyone see the Eclipse? We had about 96% totality here in Missouri. I know we are a very international group...was the Eclipse visible where you all are? What about you TT?

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 23, 2017 06:40PM traveltext wrote:

Meadow, I see from your stats that you are now four years post diagnosis. Congrats.

I hope you can get persuade Val to go with you to see Kicks.

No eclipse in Australia this year. Think I'll catch the one coming my way in 2030. It's in the diary!



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. 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 Hormonal Therapy Surgery Surgery Surgery Surgery
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Aug 23, 2017 07:11PM Kicks wrote:

Hey Traveltext! You need to plan on coming up to the States for April 8, 2024. That's when we will have our next Solar Eclipse. It will go from Texas up to the New England area (NY, Conn., Mass. RI, VT, NH, Maine).

We were 95% here.

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 23, 2017 07:19PM traveltext wrote:

Thanks Kicks, that's in the diary as well. My partner is from Maine and she's planning to go visit relatives in the coming years.


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. 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 Hormonal Therapy Surgery Surgery Surgery Surgery
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Aug 23, 2017 08:45PM Beatmon wrote:

The lady who checks you in for CT at my hospital told me today that her mom had lumpectomy and chemo at 85 years of age with pathology of IBC. The pathologists and surgeons didn't believe it....restested. She is now 92 and still up and about, only complaint is she needs more energy. Her daughter says she reminds her she is 92. It started with a rash and then a big lump appeared before she showed her daughter.

I thought some of you IBC ladies would be interested in her diagnosis with this at such a late stage in her life and how well she has done. No recurrence so far.

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/8/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 11/30/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/30/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/26/2014 Herceptin (trastuzumab) Targeted Therapy 8/26/2014 Perjeta (pertuzumab) Chemotherapy 8/26/2014 Taxotere (docetaxel)
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Aug 23, 2017 09:34PM IntegraGirl wrote:

Thanks for the encouragement Meadow. I had a US on my other breast yesterday and apparently it's trying to kill me too :). Anyway, surgery is scheduled for the 31st. I don't know that my frame of mind can be described as positive but I'm not playing in traffic yet so that's a win :).

Eclipse was 80% in Calgary. I had friends in the path of totality post pictures yesterday. That would have been something to see live

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 23, 2017 09:59PM traveltext wrote:

IG, BCO has a good lot of info on IBC HERE. Follow the links to treatment pages as well.


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. 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 Hormonal Therapy Surgery Surgery Surgery Surgery
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Aug 24, 2017 06:31AM meadow wrote:

beatmom, thank you so much for sharing this story! I appreciate hearing of this little lady and her success so much!

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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