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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 7/22/2015 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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Sep 9, 2018 07:08PM Fran2014 wrote:

Thanks so much for the input from everyone! much appreciated!

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Sep 9, 2018 07:41PM LoriCA wrote:

Oh no Fran, sorry to hear about all of that. Hope the clot dissolves safely for you, I'm sure that is scary. Did they find during a scan?This is first I'd heard of Herceptin plus Navelbine so I spent some time checking it out on the web. May I ask how long you've been off Herceptin, and how long you were on it the first time? I'm also HER2+ so I like to know what some of my options will be in the future.

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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Sep 10, 2018 07:57AM Fran2014 wrote:

Hi Lori- it was truly a crazy late afternoon on Friday but it's Monday morning & I'm feeling a whole lot better! Since I had such apparent swelling in my right arm, the onco decided to run "a quick ultrasound to rule out a blood clot" (she actually said to me later that she even she was surprised that the radiologist found one). This is my 3rd round of Herceptin during the past 8 yrs. First, after my initial diagnosis (post treatment) for a yr (which is protocol for Her2) and then again in 2015 with Herceptin/Perjeta. I did well after both and was NED for at least a year following each time so I'm hopeful that this new combo (Herceptin/Navelbine) will do the same since it just seems to keep "popping back up" in my lymph nodes. Saturday I was down for the count but yesterday I was able to go to Church and a bit of shopping so I'm anticipating being able to continue to work on this combo-fingers crossed! Have a great week!

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Sep 10, 2018 11:00AM MoreShoes wrote:

Fran, you're my hero!

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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Sep 10, 2018 11:21AM LoriCA wrote:

Fran, good thing she decided to do that ultrasound,and even better that the radiologist found it! Glad to hear that your first round of Herceptin and Navelbine wasn't too bad.

I'm not NED and probably never will be according to my MO, but so far Herceptin & Perjeta is keeping me stable enough with a good quality of life that I hope to stay on it until it stops working...and I hope that turns out to be many years. I know that you have to be off a chemo drug for a certain number of years before you can try it again, didn't know if that applies to Herceptin too, but sounds like it's been 3 years for you?

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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Sep 21, 2018 04:48AM amarantha wrote:

Hey all, just a bit of news to say no news yet : my mastectomy date is changed for the 25th.

Thanks for telling us about the blood clot Fran, that sounds wild, thank goodness they caught it !

IBC w skin/ bone mets, ER+. Tx: Xeloda 3000 mg/day 14 d on, 7 off : past Tx: Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Sep 21, 2018 05:52AM Traveltext wrote:

That's why I say, no news is good news around here! Is your breast in good shape for the mastectomy Amarantha?


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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Sep 21, 2018 03:44PM LoriCA wrote:

Good to hear from you Amarantha, Hope it was rescheduled for a good reason and not due to any complications?

Hope everyone has a fantastic weekend!

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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Sep 22, 2018 07:03PM amarantha wrote:

It wasn't really rescheduled, just that the surgeon gave me a date over the phone, and either he messed up or I heard wrong, or ... who knows. It was a nonsensical date because it was a Saturday and nothing happens on a Saturday apparently. Yes TT, my breast is in fine shape - I'll almost miss it, but I'm looking forward to being flat on both sides. Now what shall I wear ? I guess nothing for a while !

I've been to two concerts and written two new reviews since we last talked, I had such a great time, it helps keep my mind off of yucky things. Now hubby is suffering an attack of gout and feeling so miserable I gave him some of my codeine. I hope he feels better in time to be my slave after the operation !

IBC w skin/ bone mets, ER+. Tx: Xeloda 3000 mg/day 14 d on, 7 off : past Tx: Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Sep 22, 2018 09:48PM Traveltext wrote:

A. So pleased that you are cruising toward your op day and fitting in some opera reviews meanwhile. Be sure to avoid all germs so that the op is not postponed due to infections or colds. Gout is as bad as cancer IMO and it took me years on the old remedy, colchicine (taken after a bout) before going on a daily Allopurinol tablet. He can PM me on this topic if he wishes. I’m a world expert 😀.


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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Sep 24, 2018 10:40AM sbelizabeth wrote:

Amarantha, I bet it feels solid to get a plan moving forward, even if the date might be scrambled. My mom's been flat on both sides for a long, long time and she really likes it. She wears comfortable, soft undershirts and then dresses in loose-fitting, drapey tops, frequently with a jacket, sweater, or blazer. She looks fabulous.

Gout! Poor guy! I have heard that gout and kidney stones rival childbirth when it comes to ouchiness. Hope he's better very soon.

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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Sep 26, 2018 03:26AM amarantha wrote:

Hi everbody ! I'm alive, surgery was difficult according to the surgeon. Now I have a big hollow on the right side of my chest like the crater of a volcano ! Feeling great though, and have a lovely english speaking roommate.

IBC w skin/ bone mets, ER+. Tx: Xeloda 3000 mg/day 14 d on, 7 off : past Tx: Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Sep 26, 2018 03:34AM Traveltext wrote:

Wow, big cyber hugs for you Amarantha. I'd suggest a crater might have been expected! Take it easy in recovery and keep us posted.


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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Sep 26, 2018 01:11PM sbelizabeth wrote:

Welcome back after all that anesthesia, Amarantha! Glad you're alive, crater and all. Rest, recover, repeat. SB

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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Sep 26, 2018 01:21PM LoriCA wrote:

Glad to hear that you came through a difficult surgery feeling great Amarantha. Rest up and take good care of yourself.

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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Sep 26, 2018 01:39PM Valstim52 wrote:

Big cyber hugs Armantha. So good to hear from you so soon after surgery.

Val

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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Sep 26, 2018 04:34PM sbelizabeth wrote:

Amarantha, about that crater. We can all come and bring some spackling paste. We'll have that crater filled in and smoothed over in no time. You'll love it.

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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Sep 27, 2018 02:58PM MoreShoes wrote:

Oh Amarantha, so good to hear from you so soon after surgery. Lots of wishes for a good recovery.

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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Sep 30, 2018 07:38PM Fran2014 wrote:

So wonderful to hear from you Amarantha! Take it easy and give your body time to heal. Wishing you all the best:)

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Oct 2, 2018 05:15AM amarantha wrote:

Thank you, darling friends ! I'm bumbling along, feeling mostly pretty wonderful considering. sbelizabeth, come on over with that spackling paste !

How are you all doing ?

IBC w skin/ bone mets, ER+. Tx: Xeloda 3000 mg/day 14 d on, 7 off : past Tx: Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Oct 2, 2018 11:10AM sbelizabeth wrote:

It's getting down to the wire for me--I have thirteen more days at work before RETIREMENT and about sixty projects to finish up. The house is up for sale, which means every...tiny...thing...is spotless, de-cluttered, fresh flowers, no-one-really-lives-here "staged." I told my hubs he must pee in the backyard and never think about touching the bathroom towels. All of our real STUFF is in boxes, stacked up in the garage, trying to look unobtrusive but failing miserably. Movers come on October 29th, ready or not!

Amarantha, lovely to see your message. Glad you're doing well--we'll take "bumbling along" anytime. Rest, recover, heal. SB

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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Oct 2, 2018 03:50PM Traveltext wrote:


Amarantha, have you been given your post-op pathology report yet? I was wondering how they went with margins. Obviously if you're left with a deep crater, they went for it.

Sbelizabeth, you are at a crossroad. Hope the house sale goes well and you don't have to pee in the backyard for too long :)


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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Oct 2, 2018 06:20PM amarantha wrote:

Hi TT, I'm looking forward to the pathology report, but it will take at least three weeks I am told. It is a long process. Meanwhile I will soon be back on Halaven.

sbelizabeth - emptying your house for staging - that's what my parents are in the midst of as well. I empathise !

IBC w skin/ bone mets, ER+. Tx: Xeloda 3000 mg/day 14 d on, 7 off : past Tx: Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Oct 3, 2018 08:56PM Traveltext wrote:


This YouTube clip not a glossy promotion, rather it's real people talking about their disease. I'm easy to spot.


https://www.youtube.com/watch?v=bFoHlCXPOMQ


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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Oct 4, 2018 02:24PM MoreShoes wrote:

Oh TT, great video! Real people telling how it is. The motto "breast cancer is more than a tumor" made me cry.

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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Oct 7, 2018 06:57AM Lissa-1950-cancersurvivor wrote:

Hello I was diagnosed in Sept of 2006 with IBC, staged 3B at that time. I was 2 years in treatment. 3 Rounds of Chemo and 35 treatments of Radiation. I was deeply burned and took months to heal up. But went back to work as I was out of funds, sold my home, went through 3 401K's and drained all my savings and checking accounts even with insurance. I have also had In Sito breast cancer in my left breast and went through surgery and another 35 treatments of radiation. I also have had skin cancer, which keeps reoccurring. Now I have CLL a form of leukemia which has no cure. I have longer than any of my surgeons patients by over 2 years and she quoted me that in 2007. She said she had one patient that lived 10 years at that time. So I think of myself as an Energizer Bunnie at this point in time. Any one else need someone to talk too. I am retired because of the Leukemia and other serious side effects that my long treatments for both breast cancer caused. 

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Oct 8, 2018 12:22AM Traveltext wrote:

Welcome Lissa, that’s quite a dreadful run of bad luck. You’ve had all that medical toxicity and financial toxicity to boot. The fact that you are a long-term survivor is the best news of all.


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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Oct 8, 2018 07:45AM - edited Oct 8, 2018 07:46AM by Moderators

((((Lissa)))), you are a very strong person, clearly. We are very sorry for all that you have been through, and are going through now.

We truly admire your strength, and appreciate you sharing your inspirational story of long term survival. We hope you find support and comfort here and in your life.

Medicating

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 9, 2018 04:47PM LoriCA wrote:

TT I thought of you while watching the premiere of a new TV drama series on ABC called "A Million Little Things" because one of the lead characters is a MAN with breast cancer! Apparently the message is getting out.

Status quo here, hope everyone is doing well.

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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Oct 10, 2018 01:08AM Traveltext wrote:

LoriCA, status quo is not a bad state!

I’m aware of that show and have seen the trailer. What a great boost for male bc awareness it will be. Will look out for it when it makes it to one of the channels here.

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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