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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 04:23PM

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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Jun 14, 2017 11:10PM positivenegative wrote:

hi there IBC sisters I haven't been here for a long time. Thanks purple minion for this forum. Well I just recently passed my 4 year cancerversary! Wow not bad for a lady who was supposed to be dead before 6 months from dx. Over 60 cycles of H&P every 3 wks and doing great with it. It's been a long and crazy ride.

Peace

Dx 6/5/2013, IDC, Left, 6cm+, Stage IIIC, Grade 3, 16/17 nodes, ER+/PR-, HER2+ (IHC) Dx 9/24/2013, IBC, Stage IV, metastasized to bone/lungs, Grade 3, mets, ER+/PR-, HER2+ (IHC)
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Jun 15, 2017 04:31AM Traveltext wrote:

Welcome positivenegative and congrats on your fourth cancerversary. Unfortunately PurpleMinion passed away last year after a one-year battle with TNBC, but there's a supportive small group here that would welcome your input. And I'm the resident IBC brother! Keep us posted on your treatment successes.


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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Jun 15, 2017 01:11PM Valstim52 wrote:

congrats to positivenegative. Hello Meadow so glad you are better. Ofcourse sending gentle waves to Traveltext and all others.

I am doing well. Stroke therapy is getting me to a good place with my mobility. So far so good on the cancer front. Hope all is well with my other fellow IBC' friends.

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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Jun 15, 2017 02:55PM - edited Jun 15, 2017 02:55PM by Hoy234

is ibc commonly mistaken for ringworm

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Jun 15, 2017 03:04PM Traveltext wrote:

Worriedmom, IBC would most likely present as far more aggressive inflammation than ringworm. Of course, a visit to your doctor would be advised for your peace of mind.


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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Jun 15, 2017 03:11PM Kicks wrote:

There is no way my IBC could have been thought of as 'ringworm'.

The IBC Forum is for those who are of is who are " Just Diagnosed, In Treatment, or Finished Treatmentt for IBC.

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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Jun 16, 2017 04:36PM MoreShoes wrote:

Hello everyone. Good to read that things are going well.

Last year around this time, I had BMX and was going up and down to Amsterdam to have hyperthermia and radiation. This year, I've finished a course and yesterday I had exams. I'm now officially an interior designer. I don't care about the paper, I did it for me, I've learned a lot and it helped me concentrate on something else and not on cancer.

Doubted for a long time, but I bought protheses, wear them in the morning and forget about the matter. Slowly but surely I'm getting out of the dark place I was back in February. So thankful that I'm still around.

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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Jun 16, 2017 04:42PM Traveltext wrote:

Great that you have reported in here MoreShoes and so pleased to hear things are going well for you, both with the disease and your life in general. Both are important, I reckon.

I know you are an inspiration for the TN's here, so how about telling us about any treatments you are having?


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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Jun 18, 2017 08:05PM Bravenurse13 wrote:

Just finished my 33 radiation treatments.   Thank goodness!!!

My skin is holding up really well, and my PS thinks I can do the exchange surgery in 4 weeks.

I have developed stage 1 lymphedema in my right arm, which is noticeable in my knuckles, but by wearing a  

Tribute Night time garment at night and sleeve and glove when doing any repetitive tasks, is working quite well.

It's Never Easy! Dx 9/25/2016, IDC/IBC, Right, 3cm, Stage IIIB, Grade 3, ER+, HER2+ Chemotherapy 9/30/2016 AC + T (Taxol) Hormonal Therapy 11/28/2016 Radiation Therapy 3DCRT: Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 19, 2017 12:37AM Traveltext wrote:

Great result with the rads Bravenurse, and well worth the effort. When was/is your surgery? Can't see this in your sig.


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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Jun 19, 2017 08:11PM - edited Jun 19, 2017 08:18PM by Meadow

Hoy234, I just saw your post, if you are still checking here, this is my response to your question...IBC is often mistaken for a lot of things! It is rare, and most Doctors have never seen it before, so it can be misdiagnosed at first, as many finds of conditions. But it advances rapidly, and does not just sit around long unchanged. There will be some classic IBC symptoms soon, maybe in even a couple of days. Hoping this answers helps.

Moreshoes and Bravenurse, so glad things are going well.

Positive, so glad to see you!

Val, hugs to you!

Traveltext, How are you, how is the family? how is the Australian winter? Many questions today! Summer here is heating up.

Kicks, Hello dear old friend. I am excited to tell you the Spouse and I had an little vintage camper restored, and within the next year or two I really want to take her north, to see Mt Rushmore and all the sights. I have never been there and must do this!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Jun 20, 2017 01:06AM Traveltext wrote:

Meadow. Life is good thanks. Recent scans have just confirmed my NED status for the two cancers. And the part of Australia I'm in is experiencing a fake winter, so can't even complain about the weather right now! You go for it with that camper! Can we see a pic of it?


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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Jun 20, 2017 08:03AM Meadow wrote:

Sure! Pictures coming!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)

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