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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Dec 25, 2017 02:48AM traveltext wrote:

Thanks Meadow, and back to you. How's that lovely van going?


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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Dec 27, 2017 11:36AM moreshoes wrote:

Hope you all enjoy the holidays. May the 2018 is another NED year!



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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Dec 31, 2017 04:42AM minimoocher wrote:

Hi everyone, I have not been on for a while as I was undergoing eligibility testing for a clinical trial after Kadcyla was no longer working. The good news is that I have now started the Her2climb trial. Just had cycle 1 so far. It's a phase 2, double blind trial. I feel very lucky to have qualified for it.

Here's hoping 2018 is going to be a good year for us all,

Mini x



Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/8/2016 Taxotere (docetaxel) Targeted Therapy 3/8/2016 Perjeta (pertuzumab) Targeted Therapy 3/8/2016 Herceptin (trastuzumab) Surgery 7/20/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/2/2016 Herceptin (trastuzumab) Targeted Therapy 8/2/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/20/2016 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy 12/11/2017 Xeloda (capecitabine) Targeted Therapy Herceptin (trastuzumab)
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Dec 31, 2017 05:40PM traveltext wrote:

MoreShoes, you're a TN heroine. Good luck for the year.

Mini, so pleased that you're on the Her2climb trial and good luck. Let us know how you go.

HNY to all.


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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Jan 2, 2018 04:36PM - edited Jan 2, 2018 04:37PM by mara51506

Good news on the her2climb trial Mini. I am excited about that drug tucatinib since it is small enough to cross the blood-brain barrier. Would be nice to have options for us brain mets gals/guys as well besides radiation or surgery.

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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Jan 2, 2018 05:39PM amarantha wrote:

Wow, Mara, it is exciting to hear about new hopeful drugs. I'll be looking forward to hearing more about how this works out. Good luck.

IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, 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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Jan 2, 2018 07:35PM mara51506 wrote:

Amarantha, I agree totally. The more drugs we have to use, the better chance we have at a longer life.

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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Feb 17, 2018 01:32PM bride wrote:

Just checking in, honestly, I’ve been overwhelmed by dealing with insurance about storm damage to our house, trying to figure out how to handle my dp’s labile and often angry emotions, and finding out that I’ve gone from osteopenia to osteoporosis.

Other than that, I’m ok. Very glad to see most of us. Are hanging in there. If I could slow my life down a bit, I’ll be here — I miss you all.

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Feb 17, 2018 02:42PM bride wrote:

FYI, I just started a new topic in chemo: before, during, and after about the lawsuit against the makers of Taxotere who knowingly lied about Taxotere elevating the risk of hair loss or thinning and the loss of important hair such as eyelashes, eyebrows, and nasal hair. I’m on eye drops and meds because I’ve lost the protection against nasty stuff than my eyelashes and nasal hair used to keep out. And yes, over 3 years past treatment, my hair is much, much thinner.

I doubt I’ll see any money from the suit which currently has 2,400 claimants. But I’m outraged that the makers of Taxotere put profit ahead of truth and patient wellbeing.

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Feb 17, 2018 05:12PM traveltext wrote:


Bride, the storm damage claim has been around for a while. What's the main issue? That, osteoporosis, and an (understandably?) angry dp makes for a handful.

The Taxotere lawsuit sounds interesting. I wasn't even aware that all body hair didn't return post chemo.

From me, the one lingering disability from my recent stroke, double vision, has cleared up and I'm 100% better. Amazing.


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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