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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.

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Posted on: Mar 31, 2016 11:23AM

Posted on: Mar 31, 2016 11:23AM

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 10/21/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/3/2016 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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May 21, 2022 09:37AM mara51506 wrote:

fraidycatgirl, definitely stay off Dr. Google. I never had a bruise, the skin under the breast had thickened, regular doctor had felt it and sent me. By the time it was diagnosed, my breast had started resembling an orange peel. Still, symptoms can be lumped together. Once you have more information with testing, the better you can be but until them, stay off the google and even if you do wind up with IBC stay off the survival stats. Go day by day in any event. I hope you do not have it too and that it is some kind of benign issue as well but know that if you were dx, it would be scary but is also very treatable. Always, deal with the next thing in front no matter what, whether cancer or life in general.

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 4/21/2015 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 21, 2022 10:16AM preciousbecky23 wrote:

Hi everyone, just wanted to post an update since having my surgery. Unfortunately it seems as though a nerve in my shoulder/arm maybe was over stretched during the procedure (that’s what im being told) so I’ve been dealing with a lot of numbness and tingling down through my forearm to the tip of my thumb. I have a lot of weakness and can hardly lift my arm/flex at the elbow. So I’ve been wearing a sling, doing recommended exercises and will see PT in a week, probably be referred to a physiatrist as well. Aside from that, I also got a call from my surgeon yesterday, my path report came back. What we thought was going to be very little to no residual turned out to be a 0.4cm remaining tumor in the breast, extensive intralymphatic and vascular invasion, and 10 (yes TEN) out of 24 nodes positive! All of this when my breast exams appeared “normal” prior to surgery and my lymph nodes “resolved” on my presurgery CT, and multiple doctors telling me I had an “excellent response” to NAC. Talk about feeling blindsided, sucker punched, and completely defeated. I’m a wreck. I meet with my MO Tuesday to figure out what the hell I can do now. I am in so much pain, and I don’t mean from the surgery :(

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May 21, 2022 10:55AM traveltext wrote:

preciousbecky, the arm will be fixed with time and attention, but your remaining tumor needs a plan to keep the cancer localised. 10 out of 24 is an impressive score, but the nodes have been removed, remember! That puts your diagnosis at Stage 3C. Radiation must surely be on the cards. It worked following my no pCR result after chemo and my 2/23 node result. Only a full full scan would show if there's any regional cancer spread, but I'd make sure your team gets you on a plan for treating the local situation.


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. 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 Hormonal Therapy Surgery Surgery Surgery Surgery
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May 21, 2022 11:00AM lw422 wrote:

Hi Becky. I've been thinking about you and wondering how you're doing. So sorry about the soreness and numbness in your arm; that "over-extending" thing happens a lot during surgery, unfortunately. You'd think they'd be more careful with us! But I suppose they have to get to things as best they can. I had numbness and nerve weirdness behind my upper arm for months but it slowly improved.

As for the pathology; please don't freak out if you can help it. So many IBCers don't get pCR and go on to have successful treatment. I'm sorry that you have residual tumor and nodes, but they will hit them hard with radiation and possibly more chemo. So hang in there and take care of yourself while healing; you've got more fighting to do little missy!!

Sending all positive thoughts and prayers for you, and of course a big gentle cyber hug. Thanks for letting us know how you're doing.

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May 21, 2022 12:31PM - edited May 21, 2022 12:33PM by mara51506

Becky, I agree with TT, the exercises and any pain meds if you have them will help the arm. As far as residual tumour and lymph involvement, you'll get more detail. Radiation is certainly an option. Go step by step in what you handle. You have a lot going on but it will be handled. You have to start with the scans to find out info on the possible spread and there will be options given. One piece of info at a time, one day at a time, stay off of google. Treatments are vastly improved and more options than even a few years ago.

If anything else comes up through your scans, post here and I will check. I have been doing this 7 years. In your pocket showing support. Just a thing we say to each other when scans or whatever is stressing us out, imagine a pocket full of people supporting you.

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 4/21/2015 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 23, 2022 06:08PM mamacure wrote:

Happy to hear clear mammo on your good boobie LW!! Was that Louise or Thelma? Yumm home made bread

Becky, hope your surgery went smoothly, I wish they let me stay overnight, I just wanted to rest & sleep afterwards, nor ride in a car & vomit.

Hope everyone is doing well, Cheers Mara, TT, all.

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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Jun 7, 2022 01:29AM dancingdiva wrote:

hi Becky, being told everything looks ok and then doesn’t turn out that way has happened to me so many times. It sucks. There will be a plan put in for you an how to attack it.

I had similar nerve issues after surgery. Exercises keep doing them constantly even when everything gets better or else things get stiff again. Things will get better hugs

D


Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 5/31/2014 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 7/15/2014 AC + T (Taxol) Surgery 2/4/2015 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jun 7, 2022 05:20AM lw422 wrote:

Hi everyone; hope you're all doing well. I'm happy to report that I'm just living life these days; still baking bread and experimenting with rolls, flat breads, etc. Last week I made flour tortillas which was fun. I'm shocked by how fast this year is rolling on by; in 2 months it will be a year since my mastectomy. Thankfully I've made it 10 months with no lymphedema, and for that I am profoundly grateful. My RO notated in MyChart.. "no indications of LE".... woohoo!! I still have random zings and tightness, and I have to keep up with stretching or things go downhill fast.

Becky--I've been thinking about you and hoping that you're feeling better. All of this is just so damn hard and I know your path report was difficult to hear. Have you discussed treatment options with your MO? Gentle hugs to you. Please check in when you can.

Mara--I'm always interested to read your on-going apartment saga and the meals you put together. Hope you're doing well these days.

Mamacure--Haha, I still have "Louise." Thelma tried to kill me so she lives in a jar in some research lab these days. (I signed over all rights to that blob of cells so they can do what they want with her.) Are you done with Xeloda now? How are you feeling these days? Will you have scans going forward or what's next? I hope you're doing well my friend.

I hope all the IBCers will check in and let us know how things are going. Blessings and hugs to all of you.

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Jun 7, 2022 09:39AM mara51506 wrote:

LW, I am doing well at this point. Last MRI was fine for the brain as well as the CT scan was still no evidence of disease. Still loving laundry and food of course. My right boob was apparently incinerated after my surgery or so I was told.


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 4/21/2015 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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Jun 7, 2022 10:02AM - edited Jun 7, 2022 10:02AM by lw422

Mara--what wonderful news about your scans! That's just great.

I imagine most body parts that are surgically removed are incinerated. Since I'm a patient at MD Anderson which is both a cancer treatment and research center, I suppose they maintain a significant number of specimens for research. They asked me to sign an agreement allowing them to retain some of my tissue after surgery and I gladly did so. If some of my cells can help in some small way to help future IBC patients that would be great, plus I really didn't care what they did with it!!

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