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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 03:23PM

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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Apr 11, 2018 02:26PM MoreShoes wrote:

Thank you all for your kind words, they help. I've contacted the hospital and a surgeon is going to see me Monday morning. I avoid looking at my breast (yes, I'm in denial) but now I'm checking continuously if the bruise is gone.

TT, thank you for the link. I had chemo (can't remember the cocktail I had the last time), and radiation (hyperthermia)

Amarantha, two years and a few months you say? I'm two and a half years after the last diagnosis. It's scary.

sbelizabeth, yes after a cruel, grey winter we finally got spring, my tulips started blooming, I was feeling alive and now this.

Fran, I'm following your advice and taking deep breaths.


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 11, 2018 05:06PM Fran2014 wrote:

Hi Traveltext- Overall, I am holding up pretty well with the Kadcyla treatments (in fact, I go tomorrow which will be my 19th treatment). I do have to say, working full time (and getting up at 5:30 am Monday thru Friday) is definitely physically draining and adds to my fatigue (but there are only 57 more school days so I'm starting to see the light at the end of the tunnel). My Dr. continues to be pleased with my numbers/markers so I will keep going every 3 weeks and thanking God for my many blessings. In full disclosure however, my mind does periodically go "down the rabbit hole" and I start worrying about what is to come but I try to bring myself back to the present and "live for today" (but definitely not always easy). Thanks so much for asking!

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Apr 15, 2018 08:26AM MoreShoes wrote:

I'm still meeting with a surgeon on Monday but I think it was false alarm. The blue from the bruise is disappearing and the area is less tight. I think I overstretched during yoga. I feel silly for overreacting but having only 10% chance to survive the next years, I can't always stay calm and collected. Thank you all so much for your messages. (I do hope it's false alarm).

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 15, 2018 11:22AM amarantha wrote:

The statistics suck, but they are based on old information, MoreShoes, much more hope is to be had now. I do see you are triple negative, and understand your worry. Surely there is new hope for triple negative as well. Meanwhile I do hope it is a false alarm ! !

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Apr 15, 2018 12:46PM Traveltext wrote:

We all live on a bit of a knife-edge here, but fingers' crossed yours is a false alarm MoreShoes.

How are you feeling about things 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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Apr 15, 2018 03:11PM Fran2014 wrote:

Hi All- OK here's a new one. Has anyone else's onco suggested going on Lisinopril (very low dose)? Apparently, there are new studies out that suggest taking a low dose of this high blood pressure medication can help fight off cardiomyopathy for us long term users of chemo/target therapies like Kadcyla. I did some of my own research (b/c the thought of voluntarily putting yet another drug into my body totally turned me off) and it does appear to be a good thing. So..I started 2.5 mg twice daily as of yesterday. All is good so far but it sucks that I'm on a blood pressure medication as a preventative for heart disease that I don't have yet!!! Anyone else's thoughts????

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Apr 15, 2018 03:35PM Traveltext wrote:

Fran, I don't know your full treatment plan apart from that you're currently on Kadcycla. Are you also on a hormone blocker?

I'm taking 1.25mg of Ramipril (like Lisinopril, taken for high blood pressure) along with 75mg Clopidogrel (a blood thinner) as a precaution against blood clots forming due to the tamoxifen I've been on for four years. I had a stroke six months ago, and the medical team, although certainly not unanimously, are thinking the tamoxifen might have been the culprit. The cardiologist is even suggesting stopping the tamoxifen. That's a tricky decision in that I'm being asked to accept a slightly higher risk of recurrence as a trade off for stroke prevention.


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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Apr 15, 2018 05:41PM mara51506 wrote:

Moreshoes, sorry this worry is back. I am sending my thoughts your way that there will be a different explanation for this.

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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Apr 16, 2018 03:54PM Valstim52 wrote:

thinking of you Moreshoes

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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Apr 17, 2018 12:03AM amarantha wrote:

Hi Traveltext ! thank you so much for thinking of me ! well I got a letter marked "urgent" with an appointment for a PET scan, which I had on Friday, and now I'm just waiting to see what on earth they will do with me, and what it will say, proabably someone will have at least some news for me at my next chemo on Thursday (day after tomorrow). I'm feeling weak, sleepy and stiff. Hmmm. But it's beautiful outside and I managed to do some gardening !

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Apr 17, 2018 01:19AM MoreShoes wrote:

Phew...it was a false alarm. They could see that there was a big bruise but it's fading and they don't worry. What I liked the most was that they took me seriously, not for a moment made me feel that I wasted their time. I'm relieved and the lesson I took from this worrisome week is to face my fears, disgust and denial and look at my breast.

Thank you all so much for your kind words.

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 17, 2018 01:51AM Traveltext wrote:

MoreShoes, hooray. 👌🏻

Amarantha, keep us posted. âś…


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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Apr 17, 2018 06:12AM mara51506 wrote:

Glad to hear it was just a bruise MoreShoes.

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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Apr 17, 2018 01:02PM amarantha wrote:

Good news folks ! the recent PET scan showed that the Halaven has made my cancer in the lymph nodes (which had spread pretty much every where) has completely disappeared, or completely disappeared from the PET scan radar. Meanwhile, it did show progression in the right breast, which appears to have a different profile, but that seems to be localised. My oncologist called today to give me the news, and she said they have decided (after a long debate with several other specialists of various kinds) that it would be a good idea to go ahead and take off the right breast - and that as soon as possible. She has made an appointment for me with the surgeon so he can envisage the feasibility. Apparently there will be an issue of where to get some extra skin from. Should be an interesting adventure. I'd suppose they can get it from my inner thighs.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Apr 17, 2018 03:28PM sbelizabeth wrote:

Good news, Amarantha! Sorry you're preparing for surgery, but whatever it takes, right? Can I send you some extra skin? I've got lots.

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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Apr 17, 2018 03:50PM Traveltext wrote:

Amarantha, "Could be an interesting adventure", that's a good way of looking at a mastectomy! I can't see from your stats if you've had a mastectomy before. Anyway, that's really good news that the drugs appear to be working. And, from what you've said, I'm confident you have a good medical team on the job.



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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Apr 18, 2018 03:32AM amarantha wrote:

Ha, yes Traveltext this would be my second (and final !) mastectomy. I have hidden my stats because they are so long they would take up the whole page, hahah. But yes, treatment with all kinds of chemo, then radiation, etc, and then mastectomy May 2014.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Apr 18, 2018 05:29AM Valstim52 wrote:

Aranmantha so glad you have had the disappearance, and good you will be able to get that breast off. We are thinking of you


hooray Moreshoes. I'm so glad they too you seriously, and got some answers.

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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Apr 19, 2018 12:39PM MoreShoes wrote:

Amarantha, so glad that Halaven works. Since mastectomy is an option, why not.

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 19, 2018 12:44PM MoreShoes wrote:

Hyperbaric oxygene therapy, does anyone have experience with it? I can only found information on the site of Mayo clinic. I've an appointment with a clinic here to see if they can do something for me. It's supposed to help against the tightness of radiated skin.


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 19, 2018 02:31PM sbelizabeth wrote:

MoreShoes, I've spent many, many hours in a hyperbaric chamber. I used to take care of patients during dives--I'm a nurse--and then, when I started getting infections left and right following surgeries, my plastic surgeon arranged for treatments. It really made a difference for me.

I haven't had the full treatments for radiated tissues, though--I think it's quite a long course of treatments, with daily dives. I believe there are women on BCO who have. Search for "HBO" and see what you find.

I learned to love the hyperbaric environment. Almost two hours completely to myself, watching whatever movie pleases me, no cell phone, no computer, no worries. PM me if you like.

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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Apr 19, 2018 03:59PM MargaritaMI wrote:

Fran, I am also on Lisinipril in the same dosage though I take 5mgs at night before bed. I kinda like the idea of 2.5 twice per day - I may try that. I'm also on Kadcyla and my doc said the same thing, that it was primarily for heart protection. I never had high blood pressure until I started on Herceptin and while I was on it, my cardiac efficiency declined hence the Lisinipril. Testing since taking it has showed improved cardiac function and my blood pressure is back to the low/normal range now so I'm a convert. I was also very hesitant to put yet another drug in my system and during my first week on the Lisinipril I had lots of headaches. Don't get them so much anymore as long as I stay away from the Lupin generic brand. It seems to have some filler that doesn't agree with me. Hope that's helpful. M.

Dx 4/2015, IBC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2+
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Apr 19, 2018 05:50PM Fran2014 wrote:

Margarita-thanks so very much for your taking the time to give me your experience and input. It truly did help put me at ease. It's been a few days & all seems to be going fine with the Lisinipril so I'll stick with it. Hope everyone is having a good week!!! Fran

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Apr 20, 2018 07:40PM MargaritaMI wrote:

Glad to help, Fran. Sounds like we have a fairly similar protocol. Hope you do well on it! All the best to all of y’all

Dx 4/2015, IBC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2+
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Apr 26, 2018 06:09AM Theresa987 wrote:

Hello all, I have a question I hope you can help with. I finished chemo last week (YAY!). 4 dose A/C, 12 weekly Abraxane. My affected breast still a little pink. Breast is softer then it was. The pinkness worries me? Should it have gone away?

Docs think I may have IBC because of the way the breast looks.... My punch biopsy came back negative....hence the stage 2B. Mastecomy set for may 31.


Dx 10/13/2017, Left, 2cm, Stage IIB, ER-/PR-, HER2- (FISH) Chemotherapy 11/3/2017 AC Dx 5/31/2018, Left, Stage IIIA, 8/12 nodes, ER-/PR-, HER2- (FISH) Surgery 5/31/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Apr 26, 2018 11:42AM - edited Apr 28, 2018 12:10PM by amarantha

Hi Theresa, I guess they have a better chance of figuring out exactly what sort of cancer it is after the surgery and subsequent study of the removed breast. It could be IBC, it sounds like they have treated it as such since you have had the chemo up front. In any case it is a good thing you'll be having it removed. I'll be having a mastectomy about that time in May as well. Not sure exactly when yet, but will have meet with the surgeon next week. We can be sisters.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Apr 27, 2018 03:56AM Theresa987 wrote:

Amarantha, thank you for your reply. You are right, after surgery I will find out for sure. I want to know everything right now, oh well....this disease is definitely teaching me to have patience......and to stay strong....and to fight etc.. ..all at the same time. We are definitely sisters in this rollercoaster. My prayers to you for your surgery also.

Dx 10/13/2017, Left, 2cm, Stage IIB, ER-/PR-, HER2- (FISH) Chemotherapy 11/3/2017 AC Dx 5/31/2018, Left, Stage IIIA, 8/12 nodes, ER-/PR-, HER2- (FISH) Surgery 5/31/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Apr 29, 2018 02:28PM amarantha wrote:

Thanks Theresa. It is rather unnerving to wait and see. Now I am getting desperate to get this breast off of me, it has now swollen up, is all hard, and getting redder and redder. I see the surgeon on Thursday, I sure hope he will act swiftly !!

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Apr 29, 2018 03:01PM Traveltext wrote:

Amarantha, is there a way you can get an earlier appointment? Like going to emergency and getting them to call the surgeon in.


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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Apr 30, 2018 12:58AM Traveltext wrote:

amarantha, I'm thinking about your condition again. When I turned up to my surgeon in a similar situation to you, my breast surgeon said she couldn't operate and sent me to the oncologist to get chemo started. I know you had various chemos,but there may be one that will reduce all that inflammation before the necessary surgery can take place. Should you not have an appointment with an oncologist?


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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