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All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: IBC lounge: roll call, support and just a good place to hang out

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 05:23PM

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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Feb 16, 2017 09:17PM mara51506 wrote:

Glad to hear nothing was found outside your liver, but sorry the results were mixed.

Hope the addition of the Ibrance can take you to stable again or even better NED.

My scans came back. CT of brain looks good. No swelling or new spots. CT of thorax and chest were clear, no mets. Abdominal scan was not in on Tuesday but cancer clinic has not called so I will assume no mets in my abdomen. No issues down there anyway. So far, looks like I am still NED below the head which is good and no issues from the brain. I'll take it for as long as I can.

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: 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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Feb 17, 2017 03:24AM amarantha wrote:

Scwilly, thanks for sharing your results. Hmm, interesting, weird that some things got smaller and other things bigger. Hmmm. Well hmmm. I hope the Ibrance will help and be tolerable.

current treatment for metatastic recurrence of Inflammatory Breast Cancer : Decapeptyl injections to shut down ovaries, plus Afinitor/Aromasine Dx 11/11/2013, IBC, Left, 6cm+, Grade 3, 4/7 nodes, ER+/PR-, HER2- Chemotherapy 12/11/2013 CEF Chemotherapy 2/18/2014 Taxotere (docetaxel) Chemotherapy 3/16/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 3/23/2014 3DCRT: Breast, Lymph nodes Surgery 5/19/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/5/2014 Dx 12/12/2016, IDC/IBC, Both breasts, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/12/2016 Aromasin (exemestane) Targeted Therapy Afinitor (everolimus)
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Feb 17, 2017 04:17AM Traveltext wrote:

Scwilly, glad for you that the liver only remains affected. Hope the Ibrance is tolerable for you.

Mara, you are having a great run with your treatment. Still NED below the head must be a huge relief.


One percent of those newly diagnosed with breast cancer are guys. I'm one of those. Recently diagnosed and treated for prostate cancer. Now NED for both. More on Male BC here. Dx 3/6/2014, IBC, Left, 2cm, Stage IIIB, Grade 2, 2/23 nodes, ER+/PR+, HER2- Chemotherapy 3/17/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/28/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 9/14/2014 Breast, Lymph nodes Hormonal Therapy 11/3/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 17, 2017 08:15AM - edited Feb 17, 2017 08:19AM by Meadow

hugs to Scwilly and mara, Amarantha across the water too.

Ms Sherman, shy cat, Val, jc, and TT, hugs to you and everyone who has posted recently, and all you lurkers too, you know who you are, (wink)

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Surgery 1/13/2014 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 2/11/2014 Breast, Lymph nodes
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Feb 17, 2017 08:50AM Scwilly wrote:

Thank you all for your best wishes and hugs. Seeing my Doc today so hopefully I will come away more informed. I do feel this disease can be individual andmysterious in its course but I try to remain pragmatic and take each day/stage as it comes. I am so thankful there are so many options, with more coming each year.

Mara I hope you continue to stay as NED and stable

Dx 11/4/2013, IBC, Left, 2cm, Stage IIIB, Grade 2, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 11/14/2013 AC Chemotherapy 1/14/2014 Taxol (paclitaxel) Surgery 4/29/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 6/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall Dx 2/16/2015, DCIS, Right, 2cm, Stage 0, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 4/6/2015 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/23/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 11/15/2016, Stage IV, metastasized to liver, ER+ Hormonal Therapy 11/15/2016 Arimidex (anastrozole) Targeted Therapy 2/17/2017 Ibrance (palbociclib)
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Feb 17, 2017 10:57AM jcpriest0469n wrote:

Its nice to hear good news. Congrats to Mara and Scwilly. I had my 6 month check up

Everything ok This phone has a mine of its own. Have a good wk end to all.

Jcpriest




Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Underarm/Axillary; Mastectomy Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Feb 17, 2017 11:12AM Valstim52 wrote:

Hello to all

Hoping your new med works sarah. Glad you are still NED below the head Mara.

Val

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 12/24/2015, 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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Feb 17, 2017 05:51PM Scwilly wrote:

Had an appointment with my Doc today - and feel so much better. We went over my scans and I feel more confident that the Arimidex is actually doing some good, even if not to all spots! Hoping Ibrance can boost this effect. Also went over a lot of question sIh ave had outstanding. Happy weekend to you all.

Sarah

Hug


Dx 11/4/2013, IBC, Left, 2cm, Stage IIIB, Grade 2, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 11/14/2013 AC Chemotherapy 1/14/2014 Taxol (paclitaxel) Surgery 4/29/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 6/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall Dx 2/16/2015, DCIS, Right, 2cm, Stage 0, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 4/6/2015 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/23/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 11/15/2016, Stage IV, metastasized to liver, ER+ Hormonal Therapy 11/15/2016 Arimidex (anastrozole) Targeted Therapy 2/17/2017 Ibrance (palbociclib)

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