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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Sep 2, 2022 05:46AM bsandra wrote:

Dear TravelText, wow, I am so happy to be hearing from our LoriCa!:) She's been amazing. Hugs to her,

Saulius

Since May2021: NED. Mar2021: local axilla LN recurrence.Sep2019-Mar2021:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2- Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy; Mastectomy (Left) Radiation Therapy 9/9/2019 Whole breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal
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Sep 2, 2022 12:08PM lw422 wrote:

Thanks for sharing Lori's success, TT! I know it came with a struggle, but so glad she's doing well.

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Sep 3, 2022 01:56AM mara51506 wrote:

Nice to see another person doing well after five years. It is wonderful to hear.

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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Sep 16, 2022 12:01PM mommacamps wrote:

Hey everyone, Just wanted to say hi and wish everyone in the IBC Lounge well. Thinking of you 🤗

Dx IDC: Cribriform, Left, Stage IV, Grade 3, ER+/PR+, HER2-
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Sep 16, 2022 01:21PM lw422 wrote:

Hey MommaCamps! So great to hear from you. How is treatment going? I hope you're doing well with it. Keep in touch.

Hello IBCers!! How are you all? I've been keeping busy and trying to learn how to manage lymphedema... the gift that keeps on giving. Last time I went to the LEPT at MD Anderson, she told me that most of their LE patients had been treated for IBC! I suppose that's because we get the sentence of ALND, plus the fact that MDA has an IBC dedicated clinic. Anyway, just one more "Bonus Point" to the lucky IBC participants in Cancer Roulette. (I'm in acronym overload with this paragraph.)

Looks like fall is finally on the way, so woohoo. Take care and let us know how you're doing.

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Sep 17, 2022 08:34PM traveltext wrote:

LW, sorry about the LE. I had all lymph nodes removed on the Mx side (2 out of 23 proved cancerous) but have kept LE at bay for eight years now. Mainly this is by treating scratches and bites quickly. I wonder if other lymph nodes have learned to take up the job of those removed axilla nodes. Doesn't sound very scientific, does it? Next week I'll put a link here to an interview I did with the talented BCO stalwart, Mara. Can't wait for its publication.


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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Sep 18, 2022 02:00AM - edited Sep 18, 2022 02:01AM by lw422

Hey TT; hope you're doing well. How exciting that you will share your interview with Mara!! I'll be on the lookout for it.

Thanks; I was so hoping that I'd be one of the lucky ones and not have LE but so far my bad luck is holding (sort of like the IBC diagnosis)!! At least I got a year before being Dx with LE. I hope you never get it but I've read that the risk is lifetime so you are wise to remain vigilant. Right now mine is mild and I hope to keep it this way so we'll see how it goes. Take care.

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Sep 18, 2022 08:46AM mara51506 wrote:

Tt, thank you for the heads up about the interview, it will be good to read it.

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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Sep 19, 2022 11:06AM mommacamps wrote:

Hi LW! Treatment is mostly done or at least the active treatment. I finished chemo, had a BMX with 13 lymph nodes removed, radiation and a full hysterectomy due to BRCA2 and needing to go into menopause. I am finally done with lots of appointments- at least for now. I'm currently just on Lynparza and Letrozole daily. My bones are hurting so I'm going to have them check my mets and hope for the best. Hopefully, I can just maintain on these meds until reconstruction. Fingers crossed.

How are you? I am so scared of lymphedema. I joined a trial for a prophylactic lymphadema bypass but unfortunately wasn't selected to get the surgery at the time of mastectomy(blind study with 50/50 chance). The good news though is because I entered the trial, I'll get extra monitoring so if they see signs of lymphedema, I may be eligible for the surgery if it starts. It may be something to look into if your LE gets worse. I'm at MSK but I believe MDA has something similar with a good plastic surgeon.

I'm going to get better at checking this site so let's keep in touch. Us IBCers need to stick together. All the best!!

Dx IDC: Cribriform, Left, Stage IV, Grade 3, ER+/PR+, HER2-
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Sep 19, 2022 04:58PM - edited Sep 19, 2022 10:05PM by lw422

Hey again MommaCamps! Wow, you've been through a lot; now it's time to kick back and let your poor body recover. Did you have an ALND with only 13 nodes removed? Were all the nodes on one side since you had the BMX? My dissection removed 32 nodes on one side! (And not a single one had evidence of cancer... so poop.)

I had the lympho-venous bypass during my mastectomy with four good connections made in my axilla. The PS and RO were unable to predict how rads would affect the new bypass channels so the thinking is that rads "cooked" them and reduced the effectiveness of my outcome. My hand and arm were fine until a couple of months after radiation. The preemptive bypass will probably be a better solution for patients not facing radiation treatment. I'm grateful that they made the attempt, though. It was a huge disappointment to me when my ring finger and lower arm began to look a bit puffy; I'm terrified of LE but learning how to care for it. It's just a shame that after surviving BC treatment we are handed the life sentence of LE.

I was supposed to have met with another PS last week to discuss additional bypasses in my arm, but after waiting an hour and a half to see him and then being informed that the wait would be "at least" another hour and a half I decided to cancel and leave. I was quite pissed that a surgeon has so little regard for his patients. A young woman (whose appointment was an hour before mine and still waiting) said she had been there weekly for the past 3 weeks and EVERY SINGLE TIME had to wait over three hours. Maddening that some doctors have zero respect for their patients. (And this was at MD Anderson where everyone in that waiting room has cancer!) So I decided I'll just see if this is manageable on my own and with PT assistance when needed. I might go see a different PS at some point, though.

Take care and I hope you continue to do well!!

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