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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 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 7/21/2015 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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May 21, 2019 04:28PM sbelizabeth wrote:

I hear you, sister. The train ride from Simi Valley to San Diego was about the same amount of time as driving with light traffic, but it was fun and relaxing to read, nap, or just look out the window. There's a fun stop at San Juan Capistrano to see the mission and have lunch.

I used to see a UCLA-affiliated oncologist in Thousand Oaks, and I think the world of her. She was the first to suspect I had tumor emboli in the skin of the breast and insisted on a biopsy of it to see what she was dealing with. She's not necessarily an IBC expert, but very sharp. PM me if you would happen to want a consult with her.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 21, 2019 05:34PM LoriCA wrote:

Thank you but it looks like Thousand Oaks would be a haul for me, that's 100 miles and 4-5 hours by train according to the schedules I'm looking at!! I don't have the energy for that. I might look into UCI since that would be more realistic for me. I just wish that UCI's cancer center was actually in Irvine, not a few cities north of there. I drive to Irvine on a regular basis, but anything north of there gets my blood boiling anymore, especially if I need to be somewhere by a certain time.

City of Hope is also building two new cancer centers in Orange County, the first will be in Newport Beach opening later this year, then a main campus in Irvine. So within a few months I'll have two new major cancer centers a reasonable driving distance away. Cancer is a booming business in OC right now. Maybe everyone is tired of trying to drive to LA.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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May 24, 2019 02:54PM TerryLArnold wrote:

Just posting a howdy as I figure out the forum. I was in this a long time ago but been awhile.

Hope always,

Terry Arnold

DX TN IBC and BRCA 1 summer of 2007. I am NED

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May 24, 2019 03:00PM Traveltext wrote:

Welcome Terry. Please read the last five pages of this thread to see the IBC nightmare scenarios that several people here are experiencing.


NED breast and prostate cancer. More on Male BC

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.

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May 24, 2019 06:10PM michelemk wrote:

Hi Terry, are you the IBC Network Foundation Terry Arnold by chance? I am also TN IBC and NED since July 2017.

Dx 1/2017, IBC, Left, Stage IIIB, Grade 2, 1/19 nodes, ER-/PR-, HER2- Radiation Therapy Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy
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Jun 1, 2019 01:43PM LoriCA wrote:

Amarantha I'm worried about you. If you get a chance, please let us know that you are okay. Sending you love and hugs and healing thoughts.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 1, 2019 02:49PM sbelizabeth wrote:

Amarantha, whatever you're going through, we are sending hope and encouragement.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jun 1, 2019 03:39PM Traveltext wrote:

I know amarantha will report in when she can. Her last post was about pleural effusion, three weeks ago, so it's very likely that she's not well enough to post. I, too, certainly hope to hear from her soon.


NED breast and prostate cancer. More on Male BC

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.

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Jun 1, 2019 10:42PM JanetMara wrote:

Amarantha--May the good Lord gives you comfort and easy breathing,no more fluid accumulation in your lungs.

Dx 5/22/2016, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 11/28/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 7/2018, DCIS/IDC/IBC, Left, 6cm+, Stage IV, metastasized to other, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 11/9/2018 Perjeta (pertuzumab) Chemotherapy 1/25/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/9/2019 Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jun 11, 2019 01:02PM dancingdiva wrote:

hi, I sporadically write but am always reading this board. I have redness spreading across my chest slowly. I still have tissue expanders in for years now, too long to explain why. Anyways, now I have skin erosion on one of the expanders. They sucked all he liquid out because the skin is so thin due to the cancer. Any one have this or heard of it?

Thanks .

D

Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 5/31/2014 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Chemotherapy 7/15/2014 AC + T (Taxol) Surgery 2/4/2015 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jun 13, 2019 12:19PM LoriCA wrote:

Hi DancingDiva, sorry it's been slow around here lately. I don't have any experience with what you are going through and was hoping someone else who's done reconstruction might chime in. I have read several posts from women who developed skin mets along their mastectomy scar lines but sounds like you are experiencing something different. Skin erosion? Is that actual open sores or a thinning of the skin? Sounds like you've been having a really tough time with those skin expanders (over four years???) and I just wanted to say that I'm sorry for everything you're going through.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 13, 2019 10:53PM dancingdiva wrote:

yup 4 yrs of these hard expanders in. The cancer spread to my skin looking like inflammatory bc and into the nodes. Radiation seemed to clear things. Then a biopsy with a knife not needle, soon afterward near my breast started the redness again. So I didn't want to cut again to really get the cancer going. Seemed to be stable but the redness is now growing and the skin is very thin. The expander is at a wierd angle, it's completely deflated and a corneris starting to prob go through my skin. The whole thing sounds gross.

Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 5/31/2014 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Chemotherapy 7/15/2014 AC + T (Taxol) Surgery 2/4/2015 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jun 14, 2019 08:44PM LoriCA wrote:

I had a similar experience with radiation DancingDiva - rads seemed to work, everything looked like it was cleared up, and then a few weeks later it started up again. IBC and skin mets can be so d*mn stubborn. I don't blame you for not wanting to cut into the skin, but what a nightmare that you've been stuck with those expanders because of it!! I know it's not the ideal option but have you discussed with your oncologist doing chemo to try to knock it down enough for surgery? I know you'd rather not cut into your skin at all, but if that corner pokes through they are probably going to have to cut anyway. And I can tell you from experience that if it ulcerates because the cancer breaks through the skin, it will be no fun at all. You want to prevent that from happening at all costs, trust me.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall

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