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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 05:23PM

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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Aug 24, 2017 08:31AM Meadow wrote:

beatmom, thank you so much for sharing this story! I appreciate hearing of this little lady and her success so much!

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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Aug 26, 2017 12:19PM Fran2014 wrote:

IntegraGirl-I'm happy you reached out to this site-welcome! I don't "check in" much but I've found a great deal of information and support here. Since my 3rd reoccurrence in Dec. (started in 2010 and has been 'on again/off again since that time-this time to IBC), I can honestly say, I've had similar feelings and can relate to where you are. All I can say, is to try to take one day at a time and let yourself feel a bit down when necessary but then pull yourself right back out of it and get on with living (I know it's easier said than done!). But if this makes you feel a bit more optimistic, back in Dec. I figured I'd been done working and back on hard core chemo. Along comes this Kadcyla drug and BAM! My disease becomes manageable once again. Kadcyla works and I never had to resign. In fact, my school year starts again next week & I'll be there (I'm a school social worker). So... I wish you all the best with the surgery and hang in there :) Better days to come!

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Aug 26, 2017 12:27PM mara51506 wrote:

The eclipse was about 75 percent where I am in Ontario, Canada. Just looked like a cloudy day here. We are supposed to have total darkness with the next one in 2024 I believe.

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 4/22/2015 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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Aug 26, 2017 12:36PM IntegraGirl wrote:

Thanks Fran! So good that you found something that is working for you and allowing you to live your life. What a roller coaster it can be.

I've worked throughout as my work and my clients are the only things keeping me sane. I find keeping things as normal as possible is important for me.

My MO has been on a research sabbatical since July and the replacement MOs were hopeless. I asked one of them about Xeloda at my last appointment and she poo-pooed me saying why even think of that when you're having a compete response to chemo? Fortunately, my MO has a doctor who works with him who is not a MO but she's a very good doctor. She called me yesterday to talk about my US results and brought up Xeloda as an option. Anyway, my MO is back at the beginning of October and we'll see what options there are.
Dx 1/20/2017, IBC, Left, 2cm, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 8/30/2017 Mastectomy: Left, Right Chemotherapy 10/1/2017 Xeloda (capecitabine) Radiation Therapy 11/17/2017 Breast, Lymph nodes, Chest wall
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Aug 31, 2017 10:20AM MoreShoes wrote:

IntegraGirl, welcome! You're going to find great support here. After getting cancer for three times, all TN, the last one IBC, I can't really be a cheerleader and say things like: yeah, go for it, you can do it, you'll be fine, keep on fighting. All I can say is that during the summer of 2016, I was going through some cruel rads, was writing thank you letters to my friends and was preparing to die. Summer of 2017, I went on vacation to the USA (it has always been my dream), walked a LOT, got used to the prostheses and I'm living my life.

Just as Fran said, take one step at the time and be gentle with yourself.

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 5, 2017 05:22AM Traveltext wrote:

Holey moley, another article on my case. This time with an IBC spin: https://www.theibcnetwork.org/rodritchie/


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Sep 5, 2017 09:46AM sbelizabeth wrote:

Great article, Traveltext! We do such a disservice to men by carrying such a "PINK" banner. By now we're all aware of the possibility of cancer in women's breasts, but most of the world doesn't even know men HAVE breasts, much less that they can get breast cancer. Thank you for being out there.


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 11, 2017 02:47PM Beachster wrote:

Hi all,

I'd like to see this forum going for the support. I just started radiation yesterday. My tumour did not respond to chemo at all. I am ER/P+ HER2- which apparently is not good with IBC. Anyone out there with this cocktail?

Sue

Dx 3/15/2017, IBC, Right, 6cm+, Stage IIIB, Grade 2, 8/17 nodes, ER+/PR+, HER2- Chemotherapy 3/27/2017 Other Surgery 8/14/2017 Lymph node removal; Mastectomy Hormonal Therapy 9/12/2017 Femara (letrozole)
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Oct 11, 2017 05:42PM Traveltext wrote:

Welcome Sue. This forum fires up when we get a new member and when we all report in with what's happening.

When you say your tumour didn't respond to chemo at all, did it not even shrink it? Many of us here didn't get a complete pathological response to the chemo, but surgery obviously removes the tumour. Generally radiation is used as a back up. Was this not the case with you?

It's not true that ER/P+ HER2- is not good with IBC. It's the best expression to have with all breast cancers.

A couple more questions: were your margins clear, and did you have lymph node involvement?

Anyway, hang around and keep us posted


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Oct 12, 2017 01:24PM Beachster wrote:

Hi, I did have clear margins, but one was only 1mm and the surgeons like 2mm. My tumour grew 2 cm from the time diagnosed until they removed it, after chemo, so not sure when it grew, but during that time. I have 8 lymph nodes involved, six more so. I had 17 lymph nodes removed.

Dx 3/15/2017, IBC, Right, 6cm+, Stage IIIB, Grade 2, 8/17 nodes, ER+/PR+, HER2- Chemotherapy 3/27/2017 Other Surgery 8/14/2017 Lymph node removal; Mastectomy Hormonal Therapy 9/12/2017 Femara (letrozole)
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Oct 12, 2017 01:31PM Valstim52 wrote:

Hello Sue

Welcome. Do give us more info. Many of us had positive nodes, residual tumor etc. Radiation is our mop up to give us a guarantee. It's especially important with IBC. As for types, I have triple negative. According to a lot of information, some new, some old, it's the absolute worst. But here I am 2 years from diagnosis and NED.

Which chemo cocktail did you use?

So please reach out to us, we are here. Though we may go silent sometimes, know that we care.


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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Oct 12, 2017 02:37PM Traveltext wrote:

Yes, no news is good news here. But Val's right, we're here when needed, so keep coming back.

Sue, did you have a PET scan?


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Oct 13, 2017 03:41AM amarantha wrote:

Hello Sue. Chemo had little effect on my IBC, radiation had not much effect either. They did as much as they could, including combining radiation and chemo at the same time, and using extra super frequent and strong chemo, then removed the breast. Not surprisingly with such little response to the chemo, the cancer returned after 2.5 years, and in the IBC form in both breasts. It did return in a more indolent form however, and more responsive to estrogen. No chemo or radiation or surgery in the works now, just hormone and targeted therapy. I'm not impressed that it is working, but its been 10 months and I'm still here. Hang in there !

current treatment for metatastic recurrence of Inflammatory Breast Cancer : Decapeptyl injections to shut down ovaries, plus Afinitor/Aromasine Dx 11/11/2013, IBC, Left, 6cm+, Grade 3, 4/7 nodes, ER+/PR-, HER2- Chemotherapy 12/11/2013 CEF Chemotherapy 2/18/2014 Taxotere (docetaxel) Chemotherapy 3/16/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 3/23/2014 3DCRT: Breast, Lymph nodes Surgery 5/19/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/5/2014 Dx 12/12/2016, IDC/IBC, Both breasts, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/12/2016 Aromasin (exemestane) Targeted Therapy Afinitor (everolimus)
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Oct 14, 2017 11:42AM IBCCanada-CSICanada wrote:

Hello all, posting to let you know of a new association "Inflammatory Breast Cancer Canada - Cancer du sein inflammatory Canada" whose objective is advocacy for IBC patients and survivors and also to inform you about its online Facebook support group. The support group went live on Oct 9, 2017 and currently has 34 members. The association is slowly being set up and will be fully functional I expect by early 2018. I would strongly encourage anyone diagnosed with IBC in Canada to Like and Follow our Facebook page and to join the support group. We are working on a mapping exercise to figure out who is treating IBC in Canada and whether any research is being done. Note that the support group also welcomes women from countries that don't have well-established IBC support networks. Best wishes, Yasemin Heinbecker

Yasemin Heinbecker, President of Inflammatory Breast Cancer Canada-Cancer du sein inflammatoire Canada (est. Oct 2017, find us on Facebook). Diagnosed with IBC in Oct 2016. ER+PR+ HER2-.Finished radiation in June 2017.

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