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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Apr 25, 2022 01:33AM bsandra wrote:

Dear Traveltext, wow, so great to hear about LoriCA! Whenever you "meet" her on twitter/somewhere-else, please pass over my best wishes to her. Uh, these news just made my day!:)


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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Apr 28, 2022 09:15PM ronniekay wrote:

I’m here saying Hi & glad to see you

Dx 6/1/2009, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 6/23/2009 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Radiation Therapy 8/10/2009 Breast Hormonal Therapy 1/6/2010 Femara (letrozole) Dx 6/9/2011, IDC, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/30/2011 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander Surgery 6/28/2012 Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Dx 12/21/2012, IDC, 6cm+, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2+
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Apr 28, 2022 10:35PM preciousbecky23 wrote:

Just stopping my to say hi and post a quick update. I finished my last AC/pembroa couple weeks ago and overall I tolerated it pretty well. I was expecting a heck of a lot worse from the stories I've read so I'm very thankful that all I experienced was some nausea and fatigue for a few days after each infusion. I feel really good physically but nervous about surgery coming up. I'm scheduled for a left modified radial mastectomy with alnd on 5/17. Not so nervous about the surgery/recovery itself, more so about the pathology report. I feel like I handled the chemo almost too well although I assume that doesn't directly correlate with how effective it's been.

Hope everyone is doing well. Best wishes to all

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Apr 29, 2022 10:35PM traveltext wrote:

Thanks for keeping us up to date preciousbecky. Just nausea was good news for the chemo. The surgery is pretty dramatic, and you'll wake up with drains to get rid of the excess fluids. Follow the instructions scrupulously, so you don't end up with a seroma, like I did! After surgery you'll get a pathology report that shows tumor size, etc, but also whether you achieved a complete pathological response (look for pCR on the report) to the chemo. I didn't, which worried my team at the time, but they explained that radiology would clean up the residual cancer. They were right. This was all eight years ago and I'm still NED. Go for it!!

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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Apr 30, 2022 03:38PM preciousbecky23 wrote:

Traveltext - Thanks so much for your response. I’m definitely ready to get the surgery done and over with! I have a pre-op PT eval next week but wondering if I’ll see them again post-op, for lymphedema prevention/surveillance mostly. Did you by chance have therapy after surgery or do you know if that is standard, or is it only if issues pop up?


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Apr 30, 2022 05:47PM traveltext wrote:

Becky, Is your pre-op eval for planning general recovery for specifically for lymphedema? I remember the first time I had a PT eval was after surgery when I woke up with all lymph nodes removed. The PT showed me manual drainage techniques and, most importantly, took benchmark measurements of the arm for comparison should anything develop. I have never developed lymphedema but I'm scrupulous about looking after the arm when there are insect bites or gardening scratches.

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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Apr 30, 2022 10:39PM preciousbecky23 wrote:

Thanks traveltext. I remembered my SO saying she was ordering PT for “prehab”. I actually just pulled up the note in MyChart from my last visit with her and she says “PT prior to surgery for baseline measurements, and follow up afterwards for range of motion and swelling” so I guess that answers my question!

I have pre-op CT/MRI this Tuesday and it’s all I can think about. I find myself panicking about every new pain or twinge in my body lately. I’ve always been a worrier/overthinker/type A personality, and I’m just having a really hard time not being in control and not knowing what’s going on inside my body. The mental toll of this so far is so much harder for me than the physical. Trying to keep my chin up but none of this is fair

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Apr 30, 2022 11:37PM mara51506 wrote:

Precious Becky, what you are going through being nervous about every ache or pain is completely understand. My MO said to me much earlier on that if the pain or twinges last more than two weeks, that is the time to worry more. You are still going to be followed for a good while even after all the surgery by many doctors and you have good advice here.

Though I am stage IV, I have been NED from the neck down since 2015 which means my treatments and surgery all worked. Only unusual thing for me was having the mastectomy first then chemo and rads which does not follow IBC treatment protocol and to this day have only been told they wanted the breast gone first. Point being, still NED from the neck down, brain is behaving and you have every reason to put the two week timer before worrying about pains and aches. That should help in keeping them in the normal range of things. If really scared, follow up with MO. The two week thing helped me along and separated my regular aches and pains from possible cancer which actually never really caused pain. My arthritis and walking too much were the only pains I actually dealt with.

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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May 1, 2022 11:48AM lw422 wrote:

Hello everyone; hope all are doing well.

Becky--we all totally understand the the emotional toll of this diagnosis. I know you are struggling but you sound like a strong young woman, and I am hoping and praying that you will get through this treatment and live a long and happy life watching those little ones grow up. Just know that we "get it."

So happy that you had a relatively easy time with chemo; many people do so don't worry about the effectiveness. I wish you the very best outcome and easy recovery from surgery. It's another "tough but doable" thing we have to endure. I'm glad you're getting the measurements of your arms, etc. so the PT will have a baseline of your normal. Take care and keep us updated; we are all pulling for you!

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May 2, 2022 01:09AM mamacure wrote:

Good luck Becky on your surgery, I felt it was tolerable & moved along fairly fast with healing.

Hi everyone,

I so needed to hear TT saying radiation took care of it (I also did not achieve PCR), thank you. I just had my 6 month follow up with my surgeon. She felt my lymph nodes & remaining breast & said all looked good. I told her if my lymphedema gets worse, I’ll get LVA surgery. So far manageable but nighttime sleeve is not fun. She said some modes will reconnect on their own & I might feel better. That’s hopeful. I got 1 yr mammogram on my “good” boob. Hope everything will be fine. I had a good cry yesterday but back to being my regular strong calm self today.Take care 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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