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 03:23PM

Posted on: Mar 31, 2016 03:23PM

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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Mar 16, 2018 09:20AM dancingdiva wrote:

Hello ladies,

I came across an Electrochemotherapy website of this treatment being used in the UK and around the world. However, I don't see it in the US or Canada.

Have any of you heard about this?

DD

Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 5/31/2014 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 7/15/2014 AC + T (Taxol) Surgery 2/4/2015 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Mar 16, 2018 07:25PM traveltext wrote:

Welcome to the lounge dancingdiva.

I've not used it, but you've likely seen this site here: https://www.breastcancercare.org.uk/information-su...

It's used as a treatment to relieve symptoms of cancers affecting the skin, including skin metastases. Has your IBC been treated properly?


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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Mar 26, 2018 10:14AM Valstim52 wrote:

Hello All

Had my six month checkup with the oncologist. All is well. She mentioned they are now adding Xeloda to Triple Negative patients as part of the protocol. It is done after surgery and before rads. I asked her if I would have benefited from it, she said the studies though promising, to her did not have a high enough percentage of staving off recurrence. Additionally I had complete PCR. You just never know. Previously in the US, it was usually given to metastatic Triple Negatives.

I don't think I could have taken a 6 or 8 cycle drug after surgery. Mentally.

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 1/10/2016 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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Mar 26, 2018 02:00PM traveltext wrote:


Nice to hear from you Val, especially after your reassuring visit to the onc. Treatment for triple negs is advancing, I read, but of course the burden falls on the patient to handle these new drugs.

How are the stroke after-effects coming along? My vision has returned to normal since my November event, so I'm feeling pretty chuffed.


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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Mar 27, 2018 07:11AM Valstim52 wrote:

Hello Traveltext

The therapy has helped. I've had some weakness remaining when standing too long. Overall well. I've had to adjust to the new normal. Some days I'm good, others not so well.

So glad about your vision. It's a scary thing.

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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Mar 27, 2018 08:46AM sbelizabeth wrote:

Hi, Traveltext. Glad your vision is back to normal! I had to look up "chuffed" -- what a great word. I'm chuffed for you, too.

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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Mar 27, 2018 09:37AM dancingdiva wrote:

hi Travel,

Yes that was website. I've had chemo, rads, DMX and now am stuck with the tissue expanders because the C is in my skin and just getting a biopsy made it flare. It travelled to the opposite side and am therefore considered stage 4. It's in skin and the rads killed it in nodes. Have I had the proper treatment??? I hope so. Am on Ibrance.

Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 5/31/2014 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 7/15/2014 AC + T (Taxol) Surgery 2/4/2015 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Mar 28, 2018 01:30AM traveltext wrote:

sbelizabeth, yes well you can see that chuffed is the appropriate word.How are you traveling with your bc, coming up to seven years post mx and all?

dancingdiva, Glad that you are on the Ibrance. Lots of good reports about that drug. What do you think of Electrochemotherapy?



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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Mar 28, 2018 07:47AM sbelizabeth wrote:

Traveltext, I'm amazingly blessed. In October it will be seven years. I still see my oncologist twice yearly, get shots of denosumab (Prolia) twice yearly, and try to eat healthy, exercise, play with my grandbabies, and think happy thoughts. My sister was diagnosed with IBC nine months after me, and she's thriving as well. We are both chuffed to be alive and well.

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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Mar 28, 2018 05:17PM dancingdiva wrote:

travel text , if I could do electrochemotherapy I would do it in a second. It's sound great and kills it or at least had moderate results.

Selizabeth, both u and ur sister had this??!! Wow. Keep chugging.

Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 5/31/2014 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 7/15/2014 AC + T (Taxol) Surgery 2/4/2015 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)

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