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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Oct 12, 2017 03:37PM traveltext wrote:

Yes, no news is good news here. But Val's right, we're here when needed, so keep coming back.

Sue, did you have a PET scan?


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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Oct 13, 2017 04:41AM amarantha wrote:

Hello Sue. Chemo had little effect on my IBC, radiation had not much effect either. They did as much as they could, including combining radiation and chemo at the same time, and using extra super frequent and strong chemo, then removed the breast. Not surprisingly with such little response to the chemo, the cancer returned after 2.5 years, and in the IBC form in both breasts. It did return in a more indolent form however, and more responsive to estrogen. No chemo or radiation or surgery in the works now, just hormone and targeted therapy. I'm not impressed that it is working, but its been 10 months and I'm still here. Hang in there !

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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Oct 14, 2017 12:42PM IBCCanada-CSICanada wrote:

Hello all, posting to let you know of a new association "Inflammatory Breast Cancer Canada - Cancer du sein inflammatory Canada" whose objective is advocacy for IBC patients and survivors and also to inform you about its online Facebook support group. The support group went live on Oct 9, 2017 and currently has 34 members. The association is slowly being set up and will be fully functional I expect by early 2018. I would strongly encourage anyone diagnosed with IBC in Canada to Like and Follow our Facebook page and to join the support group. We are working on a mapping exercise to figure out who is treating IBC in Canada and whether any research is being done. Note that the support group also welcomes women from countries that don't have well-established IBC support networks. Best wishes, Yasemin Heinbecker

Yasemin Heinbecker, President of Inflammatory Breast Cancer Canada-Cancer du sein inflammatoire Canada (est. Oct 2017, find us on Facebook). Diagnosed with IBC in Oct 2016. ER+PR+ HER2-.Finished radiation in June 2017.
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Oct 20, 2017 05:34AM minimoocher wrote:

Hi everyone,

Haven't posted in a while. Having a tough time with bleeding in the skin mets which are now classed as a fungating tumour. So, to cut a long story short, tried tranexamic acid tablets but had such bad GI side effects couldn't leave house for fear of needing to dash to the toilet. Had to stop them. Next plan is for me to have Adrenaline ampoules which I will use with a swab and apply topically for bleeding that doesn't stop. I want to stay as active as possible and meet up with my friends and work colleagues so need to get on top of this latest challenge. Radiotherapy is not an option for me. I asked my oncologist and it was a definite no.

Hope you are all doing well.

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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Oct 20, 2017 06:51AM traveltext wrote:

Hey Mini, good to hear from you but so sorry to hear about the latest skin mets drama. How extensive are they? Do the Adrenaline ampoules appear to be working?

Amarantha, I missed your post, but great that you are coming up for 12 months anniversary since Stage 4 diagnosis. Whatdo you mean you're "not impressed that it's working"? Surely this is a good thing?


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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Oct 21, 2017 05:43PM amarantha wrote:

Traveltext ! thank you so much for noticing my post. Yes ! I not impressed that the Afinitor/Aromasine treatment was working, because I was sure that the skin infiltration was growing worse every month on the site of the scar. The PET scan did show almost NED last month, however the skin infiltration was clearly not better in my sense of things. It is now finally bad enough to actually alarm my onco, and the right breast now looks just like the left one did at the beginning of IBC. She was kind of stumped. Anyhow, she is considering this a clinical failure at month ten, and we are moving on to Ibrance and Faslodex. I basically begged to have biopsies just in case this cancer has veered back into its more virulent IBC form. Also and a PET scan will happen on the 31st of October. On the other hand, I feel great, have some energy, (have two weeks off all drugs, and am loving it) and feeling quite positive. I hope this ability to remain positive and keep laughing continues. It's been such a godsend.

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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Oct 21, 2017 10:33PM - edited Apr 13, 2018 01:22AM by traveltext

Amarantha. Now I understand. Be sure to let us know how the blood test and PET go. You're right positivity and laughter, keep on that track!

We've just had our first male Breast Cancer Awareness Day hear in Australia. Remember my bc mets pal Rob who posted here a while back, well he got featured on the front page of an important regional newspaper. Woohoo.

http://www.illawarramercury.com.au/story/5000764/w...


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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Nov 4, 2017 12:45AM KorMom wrote:

Hello. I am new to this site and hope I am posting in the right section! I am just looking for some advice and support. I am only 26 years old and have a two year old son.

One month ago I started getting sharp pain in my left breast. A couple weeks later and I had spontaneous blood discharging from my nipple. One week after this, a small red patch appeared. Within 48 hours of the first red spot, half of my breast was red.

Long story short, I have seen the OB multiple times throughout the symptoms. I was prescribed the strongest antibiotics including an anti-viral(in case of shingles), an anti fungal and an anti-bacterial (mastitis) all within a few days.

None of the medications have worked and the redness has no decreased nor has the sharp pains.

Should I be worried and how do I get my doctor to take it seriously? Thank you. You are all so strong and have amazing stories, truely.

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Nov 4, 2017 01:03AM traveltext wrote:

KorMom, Welcome. Sorry to hear about your IBC concerns. There is another dorm for those with concerns and I suggest you post there for advice. Once you have a diagnosis do come here for support.

In any case, your youth means IBC is unlikely, but you should of course continue to seek medical advice until you are happy with the outcome.


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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Nov 4, 2017 01:05AM KorMom wrote:

Thank you for taking the time to respond! I think I found the appropriate thread now. So sorry, just getting used to the site.

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