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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 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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May 31, 2017 03:30PM traveltext wrote:

Valstim, how's your health?


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
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May 31, 2017 06:18PM Valstim52 wrote:

TT so far so good. My breast surgeon and Mo both say I'm doing well. Other than my knee pain and some balance issues from my stroke, so far so good. Still NED on the cancer front.

I am slowly regaining my strength. I'm learning to deal with the new normal. The slower, sicker me. Grateful to be here, but miss my 'old' self. If that makes sense.

Thanks so much for asking.

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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Jun 5, 2017 07:25PM - edited Jun 5, 2017 07:29PM by Abulafia

Hi TT and everyone here.


TT. Her negative. Chemo should start this week. Date tbc today. I think the combo of micropapiliary and ibc has had the team arguing about procedure.


I have two areas also on my left breast but the biopsy last Monday missed and came back with normal tissue, so they will do an MRI guided biopsy this week before chemo.


Hi Meadow. x



Dx 5/1/2017, IDC: Papillary/IBC, Right, Stage IIIB, Grade 2, ER+/PR+, HER2- Chemotherapy
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Jun 6, 2017 12:03AM traveltext wrote:

Abulafia, it's good that you are ER+/PR+, HER2-, since that's the easiest to treat. You are my stage and grade as well. Someone here may have experienced micropapiliary and ibc, and could report in. Good luck with the left breast biopsy. Hopefully there's nothing to worry about.

Do you know the chemo types? I did 3 X FEC and 3X Taxol.

Great to have you with us. Keep us posted and any questions are most welcome.


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
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Jun 10, 2017 01:37AM traveltext wrote:

Mini, I finally got around to tracking down A Time To Live. A trailer of the series is available here: http://www.bbc.com/news/av/magazine-39950924/dying...

Looks like an excellent doco. Can't see that the whole thing is available outside the UK, but thanks for alerting us.

How's the LE?


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
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Jun 10, 2017 01:47AM traveltext wrote:

Mara, how is your treatment progressing?

Noo, is the scar-healing machine still doing its job?

Meadow, how's the recon recovery?

Any others with updates?


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
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Jun 10, 2017 03:08AM - edited Jun 10, 2017 04:37AM by mara51506

TT, treatment still working. I was scanned in May and am NED. Nothing from the head down. If my July/Aug scans are the same, will move to CT scans every six months. Feel better than I have for 2 years

Thanks for asking. The drugs don't have too many side effects which is nice.

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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Jun 10, 2017 04:06AM minimoocher wrote:

Hi Traveltext,

Thanks so much for tracking down the trailer for A Time to Live. I really got a lot of comfort and inspiration from watching it. As Lisa says it's time to do things and not just talk about it.

My lymphoedema is responding well to the arm sleeve. The nurses at clinic are very pleased and I don't need to go back til August.

Had more Kadcyla, number 13, this week. Ulcerated skin mets remain static. Good news.

Off on a sun holiday next week... Had to cancel last year so really looking forward to it.

Enjoy the long weekend for the Queens birthday in Oz.

Hello to everyone. Just keep taking little steps.

Mini x


Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/7/2016 Taxotere (docetaxel) Targeted Therapy 3/7/2016 Perjeta (pertuzumab) Targeted Therapy 3/7/2016 Herceptin (trastuzumab) Surgery 7/19/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/1/2016 Herceptin (trastuzumab) Targeted Therapy 8/1/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/19/2016 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy 12/10/2017 Xeloda (capecitabine) Targeted Therapy Herceptin (trastuzumab)
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Jun 13, 2017 06:51AM meadow wrote:

mara and mini, I love reading your posts that you are both feeling better! This is good news, returning to the joys of living.

TT, thanks for checking on me. Although I was probably one of the most reluctant Lat Flap patients ever, I can honestly say, so far it is a big success!. At 5 weeks post op I feel really so much better! Strength is returning, and although I do notice diminished overall strength on that side due to the rearrangement of muscle, it was a success. (So far...hesitant optimism!) Good things abound. Sending love and hugs all around the world, to my IBC family.

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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Jun 14, 2017 10:10PM positivenegative wrote:

hi there IBC sisters I haven't been here for a long time. Thanks purple minion for this forum. Well I just recently passed my 4 year cancerversary! Wow not bad for a lady who was supposed to be dead before 6 months from dx. Over 60 cycles of H&P every 3 wks and doing great with it. It's been a long and crazy ride.

Peace

Dx 6/5/2013, IDC, Left, 6cm+, Stage IIIC, Grade 3, 16/17 nodes, ER+/PR-, HER2+, Dx 9/24/2013, IBC, Stage IV, metastasized to bone/lungs, Grade 3, mets, ER+/PR-, HER2+,

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