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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: Apr 1, 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 10/22/2015 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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Jan 2, 2022 08:16AM Preciousbecky23 wrote:

Hi and happy new year to all of you!

First time poster here! Just diagnosed with stage IIIC triple neg IBC in November 2021. Genetic testing negative and no family history of breast cancer. Just finished 3rd cycle of Taxol/Carbo/Pembro and tolerating it well with noticeable shrinkage of axillary lymph nodes on palpation and breast looks almost back to “normal". Will follow the TC with AC then planning bilat mastectomy then radiation.

I'm 36 years old and have 4 daughters ages 4, 2 and two 7 month old twins. Had been breastfeeding the twins which led to misdiagnosis of mastitis by several doctors for 6 weeks before finally getting a biopsy to confirm our worst fear.

I've been reading through these threads and it's comforting to hear of others that have done well with treatment. Hoping I will be here for a long time for my girls!!

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Jan 2, 2022 09:50AM mara51506 wrote:

PreciousBecky, I am sorry you had to join the club no one wants to be a member of. As you read through this thread, know that treatment works quite well for a long time and are getting better all the time as well. We are here for questions and if you have triple negative questions, there are threads that include it if searched for and anyone here who is triple negative will help too. We will support and go in your pocket (means offering support during surgery or scans) with warm thoughts and kindness as well. Welcome.

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: Sentinel; 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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Jan 2, 2022 10:24AM LoriCA wrote:

Hey everyone! Sorry it's been so long but I wanted to wish everyone a Happy New Year. Hope everyone is doing well.

I'm still doing okay. Still on Enhertu, the first drug that's actually worked for me. It isn't shrinking any of the mets but it is keeping me stable, which is the best I've been able to hope for since the start. Just had my most recent set of scans last week and I'm still stable, for a little over a year now. That drug was approved just in time for me! It's a hard drug but my care team does a great job helping me manage the side effects. I'm still physically active and my body is staying fairly strong despite all of the places I have mets. I know I am very fortunate.

One weird thing that happened this past year (since I'm the one who always has weird things happen haha) - I didn't have surgery so I still have all of my lymph nodes. Last summer the ones on my right side decided to stop working even though they were clear of mets. I developed severe lymphedema. Then I developed a cellulitis infection and landed in the hospital. They never figured out what caused my lymph nodes to stop working. Point of note - my physical therapist did a lot of research on IBC and told me that manual lymphatic drainage is not recommended with IBC since IBC starts in the lymphatic system.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, lungs, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jan 2, 2022 12:25PM LW422 wrote:

Wow, it's so great to see everyone!

SBElizabeth--you are an inspiration to all of us with your 10 year mark! Such a wonderful thing; congratulations! Happy New Year, and many, many more.

DeniseML--so good to "see" you and hear that life has returned to normal. I hope your "minor interruptions" remain minor! I agree that my IBC sisters and brother will always hold a special place in my heart. Happy New Year.

Mara--you remain an inspiration to all of us. Thanks for being there and I hope the "real life" irritations will be minimal in the coming year. Happy New Year.

PreciousBecky--I'm so sorry to hear of your diagnosis but so glad you found us. This group was such a help to me when I needed a lifeline a year ago. We'll be here to cheer you on or cry with you during treatment. It's tough but doable. Happy New Year, and many hugs to you.

LoriCA--I'm so glad you posted. I didn't "know" you before but your posts have been an inspiration to me. I'm happy to know that you are stable; that's a blessing. Sorry about the LE, and how odd that you got it. Have you had radiation? (I'm too lazy to search your posts so I apologize for not knowing.) Take care and please stick around and keep us updated. Happy New Year.

To the others in the IBC group who haven't been around in a while, please let us know how you are. Take care, everyone.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Jan 3, 2022 11:04AM LoriCA wrote:

Hi @LW22, nice to "meet" you, although I'm sorry for the circumstances.

I had rads Jan-Mar 2019. We had tried to see if I would stay stable on Herception and Perjeta but the IBC came back with a vengeance. It proved to be resistant to chemo this time, so they decided to try frying it because it was spreading very fast. In fact my rad plan had to be modified twice because it kept spreading right before our eyes. That was my second thought - damage to lymph nodes from a very high dose of rads - but they said too much time had elapsed for that to be the cause. They even called in a radiation oncologist for a consult and he agreed that too much time had elapsed.

In 2020 I had mets all throughout my lymphatic system, clusters of nodes in my chest and abdomen. So my first thought was that the mets had returned to the nodes in my axilla, but a scan showed that they were currently clear.

It's a mystery. No one knows why they just stopped working one day.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, lungs, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jan 4, 2022 09:19AM pchyen wrote:

Hi Everyone, just dropping by to wish everyone Happy New Year and wishing 2022 to be good to everyone!

No new updates for Nicole other than she bas a full head of hair, really soft & thick hair, lol. Still struggling a bit with neuropathy in her hands and feet, mostly likely from Taxol. Hopefully in time neuropathy will go improve. Nicole still has Herceptin once every 3 weeks until August.

We are currently in Florida on a 2 week vacation enjoying the warm weather.

Is there any reason to ask for a CT/bodyscan every 6 months as follow up?

Peter, Nicole’s Husband. Nicole was diagnosed with IDC April 5, 2021. Dx 4/2021, IDC/Paget's, Right, ER-/PR-, HER2+ (IHC) Chemotherapy 4/28/2021 AC + T (Taxol) Targeted Therapy 6/23/2021 Perjeta (pertuzumab) Targeted Therapy 6/24/2021 Herceptin (trastuzumab) Surgery 9/1/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left
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Jan 4, 2022 11:44AM LW422 wrote:

Hi Lori, and thanks for the explanation. May I ask where the LE occurred (arms, trunk?) I know that rads can often cause LE but I had not heard of a "time elapsed" factor. Interesting. I'm just glad they got it under control and glad your nodes are clear! Here's hoping that you remain stable for years to come.

Hey Peter! Glad you and Nicole are getting a vacation and she has hair! I also have a head full of "fluffy" hair; not at all like my previous straight hair but I'll take it. My MO says I won't have anymore scans unless I have a concern (which is in itself a little concerning!!) I imagine different MOs have varied approaches, though. Happy New Year to you and Nicole.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Jan 4, 2022 07:26PM BSandra wrote:

Dear LoriCA, I am so happy to "see" you, I have no words... Yes, you really are "since I'm the one who always has weird things happen haha":) And this time you rose like phoenix from ashes - I checked and your last message was on 11th of Jan 2021, crazy - I cannot stop smiling:)) Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) 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: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary Radiation Therapy 12/13/2021 3DCRT: Lymph nodes
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Jan 5, 2022 10:15AM LoriCA wrote:

Sorry it was so long Saulius, time just got away from me. Just getting through day to day life on the property keeps me busy because there's always something that needs to be done. I'm still only halfway unpacked and rooms are filled with boxes. Hopefully the Ritalin will help me get on top of that.

LW422 the swelling is from my shoulder to my wrist, and occasionally my hand, on my dominant side. That is the side the cancer first started. There's still mild swelling even with compression, but not bad enough to go back to those 7 layers of wraps I had to get through for a few weeks.


I follow the Executive Director of MD Anderson's IBC Program, Dr. Naoto Ueno, on Twitter and he recently posted about their new trial that may be of interest to some. I'm going to keep my eyes on this one since I've been resistant to so many drugs. It's for metastatic IBC right now, but often drugs that are very successful with metastatic patients are later used with early stages. His post said,

"Prostaglandin is a fascinating target of IBC. IBC has very high levels of certain prostaglandins compared to non-IBC. We are excited that we opened a clinical trial based on EP4 inhibitor combined with chemotherapy for metastatic IBC."

The trial is NCT05041101. It is Grapiprant and Erubulin. TT you will be happy to know that men are included.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, lungs, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jan 5, 2022 12:17PM - edited Jan 5, 2022 12:20PM by LW422

Hi Lori. I'm glad your LE is relatively controlled. Do you do anything to manage it on an ongoing basis? I had a lymphovenous bypass at the same time as my mastectomy so I am hoping that it will be effective in preventing LE. I had 32 nodes removed!

Interesting; Dr. Ueno is my MO! I just love him. When I was in treatment and having a hard time with AC, he had to travel for a conference in Tokyo. He actually called me from Tokyo to check on me after my chemo that week. I couldn't have had a better doctor. I'll see him on February 8 for my 3-month followup visit.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Jan 6, 2022 02:29AM LoriCA wrote:

I just wear a compression sleeve every day. Since my PT advised against manual lymph drainage there's not much else we can do. They did bring up the surgical option, but I told them that since I'm Stage IV and already 4 years in to this, I'm not interested in elective surgery for something that doesn't cause me pain and doesn't interfere with my day to day life. Even when my arm was swollen to 3x the size of the other, I still had full mobility and use of the arm.

You couldn't have a better onc than the director of the IBC program at MD Anderson. Glad to hear that he has a good bedside manner too.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, lungs, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jan 6, 2022 10:53AM mara51506 wrote:

Oops I did it again! Loopy

I walked to the cancer clinic just fine though the temperature was just above freezing. Lifted legs almost like I was marching. When I left after my Herceptin, did not take the lowering temperature as being an issue. Was going to the intersection down a curb with a ramp. Wouldn't you know, foot slid right out from under me and landed on my generous butt. I was lucky I was not hurt but a couple of kind girls who just crossed saw my tears. They helped me up and I made it home without incident.

Having said that, walking overall did feel good but think for walking on sidewalks that are not completely clear and dry, cleats will be mandatory. Bring along a second pair of shoes as well to change into when grocery shopping or whatever. Not gonna stop walking though as it has been many years since falling due to slipping on ice. Just the joys of winter in Canada. The almost marching steps I took were quite a workout and I plan to keep that type of walking from now on.

Can't really do much about black ice so just need to wear the traction cleats on my sneakers for walking.

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: Sentinel; 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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Jan 6, 2022 10:59AM Traveltext wrote:

Go Mara.

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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Jan 6, 2022 11:46AM LW422 wrote:

Mara--Oh my goodness, I'm glad you weren't badly hurt! Get those cleats on, girl!!

Lori--I could not be any happier with my MO. Don't know if you are aware, but he is also a cancer patient. I felt like he "heard" me, every office visit, every time. I cannot recommend him highly enough.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Jan 6, 2022 12:00PM mara51506 wrote:

Well, I was lucky this time I did not fracture a bone this time. Cannot let this stop me and also, I need to start training on how to get myself up after a fall as well. I will train on that from home, start from pushing up with a step bench and then eventually the floor.

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: Sentinel; 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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