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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.

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 7/21/2015 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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Oct 10, 2018 01:08AM Traveltext wrote:

LoriCA, status quo is not a bad state!

I’m aware of that show and have seen the trailer. What a great boost for male bc awareness it will be. Will look out for it when it makes it to one of the channels here.

NED breast and prostate cancer. More on Male BC

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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Oct 16, 2018 02:42PM amarantha wrote:

HI folks, I'm back ! I got my anapath and post-op report, future chemo apt, plus antiobiotique treatment for infection above mastectomy scar (plus threat of re-hospitalisation if this infection is not resolved in 48 hours). The report shows that the heavy chemo and radiation treatment was only partially successful (less than 50 percent) but the surgeon got clean margins than goodness (although just barely). I've been feeling pretty horrible due to the infection above the scar, but much happier now, that I've seen the surgeon, talked to the oncologist, gotten treatment, plus new chemo schedule on the horizon. If all goes well I start Halaven again this Friday. I am so very very very very grateful to be in France. May the United States one day have universal health care, I wish so fervently !!.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Oct 16, 2018 04:09PM - edited Oct 16, 2018 05:18PM by Traveltext

Thanks for the update Amarantha. Your medical situation is so complex that I'd be surprised if you don't make it into the medical literature! At least there is some good news with the margins. And complete pathological response to chemo is certainly not always achieved. It wasn't with me. Halaven is an excellent drug and I'm assuming it will mop up your residual cancer. Hang in there, you're an inspiration!


NED breast and prostate cancer. More on Male BC

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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Oct 16, 2018 04:37PM LoriCA wrote:

Sorry to hear about that infection Amarantha. 48 hours isn't much time at all, hope it clears up fast so you don't end up back in the hospital.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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Oct 16, 2018 05:28PM - edited Oct 16, 2018 05:32PM by amarantha

Traveltext and LoriCA, you are right ! 48 hours isn't much time. I really do hope it is just an infection and not a new infiltration of the actual cancer (precisely what the surgeon was afraid of) (he really did not want to do this surgery). And I'd much rather it resolve so I can go on back on Halaven chemo on Oct 19 because the growth of skin mets on the other side of my chest is starting to scare me. But recent PET scan showed no cancer left in my bones or lymph nodes for now, which is just amazing. And I have so many more operas to travel to and review !

This will sound perverse, but I'm kind of looking forward to losing my hair again (3rd time !) so I can wear my pretty wig. Although it has really been nice having hair growing in. It's like an inch long now, and stubbornly sticks straight up. I look exactly like my paternal grandmother. Unfortunately, I pretty much hated her, so I'm not super in love with the look, on the other hand it is kind of cute.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Oct 16, 2018 07:16PM LoriCA wrote:

Amarantha you have my sincere sympathy for the skin mets. Mine had ulcerated last year and I truly understand how horrifying it is to actually be able to see the cancer spreading. Great news about the bones and lymph nodes, hope all continues to go well for you. And your thoughts about your hair don't sound too perverse to me at all - my hair is currently at the awkward too short/too long stage where I can't do anything with it and I hate the way I look. I often think about trimming it super short again because after a lifetime of spending a half hour each day to style my hair, I've really enjoyed not having to worry and fuss about it this past year.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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An hour ago - edited 34 minutes ago by amarantha

LoriCA how did they handle the ulcerating skin mets ?

I am actually back in the hospital, this afternoon my surgeon opened me up, cleaned out the infection, put in some super fancy kind of drain. I felt just fantastic afterwards, so relieved. But the bad thing is it will postpone my going back on chemo for two more weeks.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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4 minutes ago LoriCA wrote:

Amarantha mine broke through the skin within days of the first symptoms of IBC and until I started chemo it spread very quickly, landed me in the hospital for a week and I had a wound care specialist. It was cleaned with saline daily and at first she used silver rope dressing lightly covered with gauze. The rope dressing has surgical mesh and is used on cavity wounds. It absorbs all the nastiness and it's not a lot of fun to change the dressing yourself if you don't have daily help. Once chemo started healing the skin, we switched to SilvaSorb wound gel, but then my MO said he didn't believe the SilvaSorb was doing anything so I just flushed with saline daily and kept loosely covered (it healed better with very loose covering so the air could circulate). It responded to chemo immediately so we didn't have to take more drastic measures, but took about 5 months for my skin to completely heal (scabbing and then new skin growth).

I'm so sorry that you are back in the hospital and that your chemo is postponed. Gentle hugs and lots of healing thoughts for you. I hate this damn disease.

Lori

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)

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