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

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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May 14, 2022 12:44PM preciousbecky23 wrote:

Just 3 days until surgery!

My surgeon usually allows patients to go home the same day, but since I live about an hour away she wants to keep me overnight just in case I have any issues, and I’m ok with that. I am anxious but looking forward to just getting it done and over with, and moving on to radiation!

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May 16, 2022 03:51PM 2friedeggs wrote:

Hi sbelizabeth .I havent been on here for a very long time as a couple years after my breast cancer my dear husband got glioblastoma which has no cure-he went through pure hell before passing away 18months later. I couldn't get back on here - I felt over whelmed by cancer and put this site as well as the brain cancer site I was on when he was still with me, totally out of my mind. Today however I noticed my yearly oncologist appointment is next month and I was researching Arimidex after 10 years but saw nothing. Then I remembered this site and thought Id look on here as surely out of our 2012 groups I wasn't the only one questioning going off it and sure enough I found this post with you questioning taking letrozole after ten years. I swear I have been thinking exactly the same for a year now since my oncologist mentioned that I would be able to go off of it in 2022. I told him I don't want to go off of it and he said there were no studies for longer than 10years that he knew of. He promised to research possible pros and cons and said we will discuss it in June in 2022 when I go back. So I'll let you know how that goes-let me know if you get to go on year 11.

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May 16, 2022 09:49PM lw422 wrote:

Becky--I'll be thinking about you tomorrow and keeping everything crossed for an easy, successful surgery for you! I know you'll be dealing with a lot this week so check in when you can. Take care and my best to you! Big cyber hugs.

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May 16, 2022 11:14PM mara51506 wrote:

2friedeggs, just wanted to offer my condolences on the loss of your husband.


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; Mastectomy; 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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May 19, 2022 06:58PM lw422 wrote:

Becky--thinking about you today and hoping you're feeling OK. I imagine you are quite sore and dealing with drains; hopefully all that will pass soon and you'll be on the mend!

I had my first mammogram today since my diagnosis in January 2021. I was nervous but it came back clear... so yippee!! Also saw my radiation oncologist for the final checkup; she said everything looks great. I'm very thankful.

Hope you all are doing well. Check in and update us.

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May 20, 2022 07:59PM 2friedeggs wrote:

Mara51506, Thank you for your kindness & condolences- they are much appreciated.


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May 20, 2022 08:32PM fraidycatgirl wrote:

Nice to meet you, everyone. I'm joining this forum proactively. This morning I noticed a nickel-sized red rash-like spot on my right breast. My left breast has been tender for a few weeks now. I emailed my gyno with a picture of the rash, and her nurse called back telling me to come in first thing Monday. I googled my symptoms and found IBC, so here I am. I'm trying not to freak out, but I can't stop looking down at the red spot and anticipating what's in store for me.

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May 20, 2022 08:43PM lw422 wrote:

Hi there and welcome, FraidyCat! Hopefully you won't have IBC and won't have to stick around for long! IBC is rare so chances are good that you don't have it. That said, my original symptom was exactly the same... a pink "bruise" on my breast about the size of a quarter. Thankfully I never got any of the horrific symptoms that you might see if you google IBC... so please don't Google. (And if you do, stick to websites such as the major cancer institutes for the latest information.) I'm glad you are getting in to see your doctor ASAP. I hope you'll let us know what you find out on Monday, and my prayers and best wishes are with you. Take care.

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May 20, 2022 08:48PM - edited May 20, 2022 08:50PM by traveltext

fraidycatgirl, Welcome to the group. Ive been here eight years and have seen so many people come here with your symptoms only to have their fears allayed after a clinical examination. Keep us posted.

PS, ignore my crazy signature, this site's forum has been broken for months now.


NED breast and prostate cancer. 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. Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery Hormonal Therapy Surgery Surgery Surgery Surgery
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May 20, 2022 08:59PM fraidycatgirl wrote:

Thank you so much lw422 and traveltext for the kind messages and hope! I'll definitely keep you updated and am thinking of you both and everyone here.

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