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 04:23PM

Posted on: Mar 31, 2016 04:23PM

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 7/21/2015 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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Nov 27, 2017 10:49PM Junif wrote:

Thanks Val and GP didn't call back today despite the fact that my request was red flagged in their computer. Tomorrow I have to try again but this is disheartening.

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” MLK Jr. Dx 7/18/2012, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Nov 30, 2017 01:50PM kicks wrote:

Not directly IBC related - BUT thought I'd post anyway.

Saw my Dermatologist this week - good but not 100% perfect but am happy with.

I am VERY light skinned with light green eyes and have abused my skin by spending so much time outdoor (not 'sunbathing' but active) so my skin was abused. I've had a BCC on my arm and a couple of SCCs on my face (totally unrelated to IBC).

Well - when I saw my Derm., she couldn't find any areas of skin cancer but did find several areas (as I expected) of Actinic Keratosis (precancerous). So, I doing Imiquimod again to deal with those areas.

Please - to all - especially those of us who are 'more advanced' in yrs (I'm 71) to stay on top of skin issues. To all - remember to use sunscreen.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Nov 30, 2017 02:09PM traveltext wrote:

Timely reminder from Kicks. Last week I had a SCC removed from my cheek in the doctor's clinic and path showed clear margins. Oh if BC issues were so simply dealt with.

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.
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Nov 30, 2017 10:07PM sbelizabeth wrote:

Very, very good advice. My hubs and I spend a lot of time riding bikes with bare arms. We wear buckets of sunblock now, but didn't for many years. He had a SCC removed from his wrist.

Sunblock for any exposed skin, every day. And we both wear sun blocking driving gloves. The rays will come right in the vehicle's window.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy; 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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Dec 12, 2017 06:59AM bride wrote:

Hey TT,

Thanks for the new forum!


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 11/17/2014 Arimidex (anastrozole)
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Dec 13, 2017 01:54AM traveltext wrote:

Val, that's a terrible list of stroke side effects and I really hope that you can regain more of your faculties, and especially make progress with your memory issues. Is there nothing you can take for the night pain? I'm fortunate in that, six weeks post the event, I just have double vision to deal with. I've had some prism glasses made up and that is a short-term corrective, but I need full recovery to get back to driving.

Happy Holiday Season. Let's hope 2018 is a good one for us all.

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.
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Dec 13, 2017 07:12AM amarantha wrote:

Dear Kicks, do please keep us posted on how the Imiquimod works for you. I have tried to persuade my onco to let me try it for the skin mets of bc on my ex-left breast, but no 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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Dec 14, 2017 12:02PM Valstim52 wrote:

yes TT I have things for the pain. Both conventional and homeopathic. I’m handling them for the most part well.

I’m grateful to be 2 years from diagnosis, and so far NED.

It’s a daily battle to not spend time dwelling on this new state of living I find myself facing. Longing for my prior strength and energy etc. I’m learning patience and acceptance. I often think if I suddenly had a recurrence, how I would have wished i’d Lived life with more gusto.

Just my thought


Easier said than done. BCO is a godsend for me.

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 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Dec 14, 2017 02:06PM traveltext wrote:

Val, congrats on the two-year NED anniversary. You're right about patience and acceptance but, as you suggest, we need to live life to the fullest. Having had a couple of strokes and a couple of cancers, I'm now seeing the latter in a more favourable light because we get, relatively speaking, a fair time in continued treatment if we get mets. With a stroke, however, we are a hair's breadth away from real debilitation that can destroy brain and body function and make living with gusto an impossibility. Meanwhile, I strive to make each day a good one, love, laugh, eat well, exercise, and count my many blessings. And, very importantly, I read a lot, fiction, nonfiction, cereal boxes, whatever. If I were to lose this faculty, I really would be up shit creek!

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.
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Dec 24, 2017 09:59PM meadow wrote:

Hi all, popping in to say Merry Christmas to you all. Hugs to each one!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/25/2013 AC + T (Taxol) Radiation Therapy 2/10/2014 Breast, Lymph nodes Surgery 1/14/2017 Reconstruction (Left)

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