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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Jul 27, 2022 05:47PM lw422 wrote:

Hey there SBE. It's nice to have this safe place where everybody gets it, so thanks. This too shall pass. Is it time for your Alaskan adventure yet?? Let us know how it goes; I hope you have a wonderful time.

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Jul 29, 2022 10:15AM sbelizabeth wrote:

The Great Alaska Salmon Coax launches tomorrow, thanks for remembering! Today is crammed with packing and preparing. We've been looking forward to this for a year so it better be a fishing trip that goes down in history.

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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Jul 29, 2022 11:01AM lw422 wrote:

Ooooh, I know you're excited. I hope you have a fabulous time. Share a few photos with us so we can live vicariously through you! Take care.

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Aug 2, 2022 07:03PM mamacure wrote:

yes we get you LW! It’s ok to be angry, sad, shocked etc. we have been thru a lot esp Mara. I too was a calm happy go lucky positive person until dx. Often when I have my bulky hot night sleeve on, awake because mouth is so dry, with only one boob, I shout to my self, WHAT the heck happened to me!!!!! Feel like bawling. This all sucks but yes at least we are alive. Hang in there everyone

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture
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Aug 5, 2022 11:54AM lw422 wrote:

Hi everyone! Seems like the forum software issues are never going to be fixed; I hate that people aren't coming here anymore. I just wanted to check in and see how you all are. Mamacure, I think we all have those "where'd my life go?" days but I think I'm coming to terms with my new reality...maybe!!

Hope everyone is doing well. Check in and say "hey" to us.

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Aug 6, 2022 01:04AM traveltext wrote:

I think most of the technical issues have been fixed.

I'm fine, thanks LW. Just been reflecting on the passing, two years ago, of one of our lovely members, Amarantha:

You can read about her in a couple of my posts on this page:

https://community.breastcancer.org/forum/81/topics...

Mamacure, sorry about the arm: what a burden in the hot weather.

SBE, don't forget we'll want an update on the Salmon Coax.

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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Aug 7, 2022 08:47PM - edited Aug 8, 2022 10:46AM by sbelizabeth

Amarantha, you were classy, funny, articulate, professional...amazing. We love you and miss you. You were one of a kind.

The Great Alaskan Salmon Coax was a total blast. We were fishing on the Kenai River, where the sockeye are currently running. It's a completely different style of fishing than I've even done. These fish begin their journey in the Pacific Ocean and swim upriver, a long and treacherous journey, to the streams where they were initially hatched. There they spawn, and very soon afterwards, die. When they leave the ocean to head upriver they are only interested in reproduction and don't eat at all, so no regular bait is effective. You toss in a line with huge fly rod and drag it through the water, hoping the hook will snag a salmon's mouth. My hubs and I caught 15 or 16 fish between us. We filleted and froze them and flew them home in an insulated box as checked baggage.

I discovered an odd physiological fact about myself. I can pee in the parking lot porta-potty, then put on my waders and boots, collect my stuff, find a good spot, step into the river...and instantly have to pee again. Must be the breast cancer.

Here's a nice one I caught in a beautiful spot. Alaska is amazing.



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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Aug 8, 2022 06:38PM mara51506 wrote:

Beautiful picture sbelizabeth, nice outdoor scenery.

I am still doing fine, I never really think that I have been through very much as many more people with MBC have adjusted to many more treatments as progression sets in. Other than spot treatment in my brain, original treatments have been successful, nothing from the neck down shows up, brain has been stable after the spot treatment in 2018. Even people who deal with a recurrence but not MBC have to go through treatment all over again. I am used to my scans, Herceptin and echo appts. Only have to talk to my MO every three months. Pretty easy for me.

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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Aug 9, 2022 01:40AM traveltext wrote:

Well, SBE, all that fish and the physiological discovery. Doesn't get much better.Happy

mara, I've always thought your situation was unique. Do your medical team think this too?


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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Aug 9, 2022 05:29PM lw422 wrote:

Hi everyone. I had my 3-month checkup today and it was a non-event. I have gained a couple of pounds and got a lecture about having a colonoscopy but other than that nothing to report. I see my plastic surgeon tomorrow for a 1-yr checkup and to discuss a slight revision on the end of my scar. There's a little "puff" there that he said could be stitched in his office to lie flatter, so hopefully that can be scheduled. He has to get approval from my MO before any cutting, though. I'm also going to ask him about additional lymph channel bypass connections in my arm; I'm still freaking out over LE. :hrmm:

TT--I don't believe the forum glitches have been fixed; my understanding is that they are looking for a whole new platform to migrate to. I just don't understand what is taking so long. I worked in IT for 30 years and have never seen such as this.

Mara--I'm glad your little cat is feeling better and that you are doing well.

Mamacure--what kind of night sleeve do you use? Is it one of the big "oven-mitt" things? How are you feeling these days?

SBE--what a great photo!! I'm so glad you had a great trip. I'm sure the scenery was swoon-worthy. Thanks for sharing.

Becky--check in when you can and let us know how treatment is going. I've been thinking about you.

Hope all the IBCers are doing well.

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