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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Mar 31, 2016 09:51PM Kicks wrote:

I was DXd IBC 6 1/2 yrs ago at 63. Finished TX 6 yrs ago (still on Femara/letrozole). Still NED. Still as active as ever and loving every minute of life I have been to have!

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Apr 1, 2016 08:41AM PurpleMinion wrote:

Hey Kicks, hey Hydranne! I am so glad to hear from you both. 6 1/2 years NED is great news! Hydranne, you and I will get there. I hope to get to the point that I can have surgery too, working on that (I currently have skin mets in such a way that surgery would be very dangerous, and the mass itself is too large, but hopeful that I can get there).

IBC is such a beast and so many people get substandard care I am interested in talking about it, trying to share stories and thoughts and educate women (and men!) and just build a small community of support here.

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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Apr 1, 2016 09:10AM PurpleMinion wrote:

Public service announcement: https://www.theibcnetwork.org/inflammatory-breast-...


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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Apr 1, 2016 09:11AM PurpleMinion wrote:

Here is a good chart RE: staging IBC

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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Apr 1, 2016 09:12AM Valstim52 wrote:

Hi Ladies

HI from a newbie. Your stories give me hope. Was dx Dec 2015. Finished 4 dose dense AC, and only have 2 more dose dense Taxol to go. Scheduled for Surgery in May. Latest scan shows My tumor has run away, can barely feel, and IBC symptoms are almost gone. I had symptoms overnight, red inflamed breast, swollen, and I do have an IDC mass. On top of it am triple negative. Still in shock.

Thanks for creating this thread. I'm 56, been married 36 years. 3 grown children.

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 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Apr 1, 2016 09:15AM PurpleMinion wrote:

Hey Valstim52, so glad to see you here in the lounge! I am really happy to hear that you are having a good response to treatment and hope you will keep up up to date on your progress! I am also TN and my own case hasn't been so straightforward so I will revel in your success as you go along (and we will all help you over any bumps in the road).

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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Apr 1, 2016 09:20AM - edited Apr 1, 2016 09:23AM by traveltext

Well, I'm in. Currently NED but never take anything for granted and never miss my nightly Tamoxifen, which is the gold standard for treating HER2- guys. Like Kicks, I'm goin' for it. Always believe we have to be our own advocates when it comes to our health, so I want to see how people are managing their IBC treatments.

I'm 65, with a partner, and have two kids with kids. Always ready to help others if I can and manage the website http://www.pinktobersucks.com



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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Apr 1, 2016 10:35AM PurpleMinion wrote:

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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Apr 1, 2016 04:17PM moreshoes wrote:

What happened to the IBC, ain't Facebook thread? I had poured out my soul there and the whole thread disappeared.


Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Apr 1, 2016 04:43PM PurpleMinion wrote:

I know Moreshoes, it is sad. But here we are again, it's like starting over... The person who started that thread had some misunderstandings on another thread and decided to leave BCO entirely, vowing never to return. I've had my own "issues" that I don't choose to elaborate on in the public forum so I know how tricky this online life can get (I maxed out my PMs for today so I am unable to answer Meadow or send you and a couple of others invites to join us here until tomorrow - so glad you found your way over).

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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