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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.

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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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Jul 17, 2017 08:21PM traveltext wrote:

MoreShoes, It's great that you've marked a year post treatment. What a good feeling! Are you able to work using your interior design qualifications?

Scwilly, How's your targeted treatment coming along?

I'm pushing forward with my MaleBC mission and just had another article published HERE.

Best wishes to all Loungers.


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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Jul 17, 2017 08:33PM - edited Jul 17, 2017 09:21PM by traveltext

On a sad note, It's now just one year since PurpleMinion (Julie) passed. She's missed here, for sure, but hopefully not forgotten.


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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Jul 17, 2017 08:34PM - edited Jul 17, 2017 08:34PM by Scwilly

I'm dong really well on Ibrance. Ive been on it for 6 months, and I've had one scan which has shown spots shrinking and some necrosis. Prob due and one in a months time after I see my MO in August. The main side effect is being super tired. I looked at my WBC levels the other day and realised they are at same level as they were for ACT chemo so no wonder. However, I do feel I can tolerate Ibrance well. I'm taking it alongside Anastozole - which I feel is what is giving me my stiff joints. Trying to do some exercise - swimming specifically which helps. Thank you for asking.

Dx 11/4/2013, IBC, Left, 2cm, Stage IIIB, Grade 2, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 11/14/2013 AC Chemotherapy 1/14/2014 Taxol (paclitaxel) Surgery 4/29/2014 Radiation Therapy 6/24/2014 Whole breast: Breast, Lymph nodes, Chest wall Dx 2/16/2015, DCIS, Right, 2cm, Stage 0, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 4/6/2015 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/23/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 11/15/2016, Stage IV, metastasized to liver, ER+ Hormonal Therapy 11/15/2016 Arimidex (anastrozole) Targeted Therapy 2/17/2017 Ibrance (palbociclib) Chemotherapy 8/31/2017 Xeloda (capecitabine) Dx 4/5/2018, Stage IV, metastasized to bone, ER+ Surgery 4/5/2018 Radiation Therapy 4/18/2018 Chemotherapy 5/3/2018 Other Chemotherapy 7/27/2018 Carboplatin (Paraplatin) Chemotherapy 9/20/2018 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy Aromasin (exemestane)
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Jul 17, 2017 08:58PM traveltext wrote:

Scwilly, Exercise makes cancer drugs more effective according to recent research, and swimming is the perfect exercise; aerobic and low resistance on your joints. Do try to keep at it, even if it means finding a heated pool out of season.


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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Jul 18, 2017 11:25AM moreshoes wrote:

TT, what a great article! Keep on educating people!

Yes, I also thought of Purple Minion when I wrote about the one year from treatment comment. We had the same diagnosis and of course I was rooting for her.

I'm not working as an interior designer, I've done this course for me, just for the fun of it. It took me 10 years and three times cancer but I finally realized that there's no "later". So I've bought the car, we're going for an expensive vacation to the US, I'm eating the chocolate.

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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Jul 18, 2017 11:31AM moreshoes wrote:

Scwilly, thanks for the tip, I hadn't thought of Marks and Spencers. Good news that Ibrance is working. Swimming is always nice. I'm doing yoga, don't dare to go to the pool yet with BMX, another hurdle to pass.

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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Jul 19, 2017 06:38AM traveltext wrote:

Good on you MoreShoes. When does your vacation begin? Plus, I hope you post some pics here of some of the whacky things you see.



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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Jul 27, 2017 04:43AM minimoocher wrote:

A special day in our home. My youngest daughter, 17, is off to Lourdes on volunteering Pilgrimage. When signing up last August I had just found out about recurrence and was not sure what 2017 would bring and July 27th certainly seemed a very, very long time away. Thankfully, by now I have had 15 cycles of Kadcyla and it's great to be able to see her off on her big adventure. I am so grateful to have access to this targeted chemo. It's a very clever drug.

Purple Minion is often in my thoughts.

Best wishes to 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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Jul 27, 2017 07:02AM - edited Jul 27, 2017 07:03AM by traveltext

That's fabulous news Mini and what a great experience for your daughter. Do you get to tag along? I've heard many positive reports about Kadcyla and how good is it that you are going well on it coming up for one year now.

Valstim, are you still looking in a forward direction?

Bravenurse, how's the LE going?

Meadow, don't forget yo post a pic!

I'm way too well and was asked to write a piece for The Underbelly: https://theunderbelly.org/2017/07/male-breast-canc...

Best wishes to 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. 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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Jul 31, 2017 08:35AM meadow wrote:

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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