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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: 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 7/21/2015 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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Jul 6, 2019 03:21AM amarantha wrote:

Yes, sleeping fine, but who would't with the cocktail I'm receiving. Yes I've been diag. with cancerous meningitis (in the meninges) but it was caught early enough to treat at least and the treatment is decadron, perfectly tolerable.

IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Jul 6, 2019 03:58AM amarantha wrote:

Thank you all so much for all your worrying, TT et al. It was touch and go, and not very pleasant. My mind took a vacation and that was weird indeed.

IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Jul 6, 2019 04:30AM Traveltext wrote:

Leslie, it’s nice to see you back here. Your stats are showing nine years in remission for TNBC, and that’s a remarkable achievement.

Amarantha, in your last post before your miraculous reappearance, you were drifting off into a drugged state. How long did this last? It doesn’t matter, really, but you’ve only got to look at the calendar to see how long you were out of communication. Now what about these house alterations, what’s all that about?

Thanks to those wh mentioned Rob, he was a pal and I’ll miss him.


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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Jul 6, 2019 10:22PM Flo80 wrote:

Hi there,

I have been just diagnosed with IBC yesterday probably stage 3. Initially the doctors told me it’s DCIS/IDC with tumour size 2.8 in the US and 5.2 in the MRI. Does anyone know if there is some kind of insurance that we can buy to get treatment in the USA. I reside in Kingston Ontario. There seems to be hardly any place where they specifically specialize in IBC.

Regards

Flira

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Jul 8, 2019 04:20AM Traveltext wrote:

Flira, that’s a question for a Canadian, and I’m not sure we have one posting here right now. I’d suggest you go back the the main forum and look for the post by Canadians.


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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Jul 8, 2019 06:16AM Flo80 wrote:

Thank you so much. Will check and do you know how soon they should start the chemotherapy as my tumour hurts and I feel it’s getting bigger. It’s been two weeks since my MRI now

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Jul 8, 2019 06:28AM Traveltext wrote:

Flira, prompt treatment is pretty essential for IBC. I'm sure there will somewhere local that will know the protocols for treating your IBC.

Searching Google for: "inflamatory breast cancer treatment ottawa" I can see some options for you.

Best get moving on this.


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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Jul 8, 2019 10:45AM Flo80 wrote:

thank you so much. They told me on Friday that they will do my echocardiogram soon and then things proceeed. Just a question that what happens next . Do they assign you an oncologist and then he gives you a referral for chemo? I feel anxious each passing day

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Jul 8, 2019 10:49AM Flo80 wrote:

problem is that they thought it’s IDC from the MRI and ultrasound. Only after the surgeon saw then he told me it’s inflammatory breast cancer. He showed me MRI and said see the thickness as from the image. My skin punch biopsy has not. One back yet

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Jul 8, 2019 12:56PM LoriCA wrote:

Flira here's the section for Canadians where someone should be able to answer any questions specific to healthcare in Canada https://community.breastcancer.org/forum/55

We have people from several different countries here with IBC and I'd guess that things are probably done a little differently in each country. I'm the US, once my biopsy confirmed IBC I was immediately referred to an oncologist and then underwent a battery of scans to confirm staging and that took almost week. I started chemo the day after my staging was confirmed because of how fast mine was spreading. Because of the aggressive nature of IBC here they always do additional scans (full body MRI,CT, PET/CT, bone scan) to see if it's metastasized before moving forward with treatment, and I'd think it would be similar in other countries.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, 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 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 8, 2019 02:00PM Flo80 wrote:

Hi Lori problem is it ultrasound showed DCIS and idc and mri. I pushed for scans and kept asking if this is IBC and they give a surgeon date of 5 July that’s when they diagnose me finally. I called the surgeons office and they said they will assign me one in next few days. I asked them what feel days look like amd they said next time who da us. Let’s hope they push things up. I am so grateful to all of you

Flora

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Jul 9, 2019 12:01AM Leslie2010 wrote:

TT: thank you ! Yes, I am grateful to be NED for 8 years+! You are always so thoughtful! It was on this website that I found a lady that was also TN and took the course of radiation/chemo concurrent treatment before surgery, which encouraged me to go against the tumor board’s recommendation. Unfortunately, she dropped off from the forum soon after. So, I am back here, hopefully provide hope for some people...

sbelizabeth: my PTSD was more on personal side, it was during year long treatment, I painfully realized I lost my husband (now my ex) to alcoholism.
Dx 12/15/2010, IBC, Left, 6cm+, Stage IIIB, Grade 2, 0/4 nodes, ER-/PR-, HER2- (FISH)
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Jul 9, 2019 05:10PM Flo80 wrote:

Hi Guys,

Just a question. My punch biopsy did not show any cancer cells in the skin. Does it change my diagnosis as I was clinically diagnosed. I also know that IBC is more likely a clinical diagnosis?

Regards

Flora

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Jul 9, 2019 11:02PM sbelizabeth wrote:

Flora, IBC is a clinical diagnosis. Most frequently the pathology findings include IDC that has tumor emboli in the lymphatic channels of the skin of the breast. For a diagnosis of IBC, the clinical signs of redness/peau d'orange/skin thickening must cover at least 1/3 of the breast.

Some people who have IBC have had negative skin punch biopsies, and some dermatologists/surgeons do several punch biopsies to assure adequate sampling of the affected skin.

For most breast cancers, you have time to get your ducks in a row and get ready for treatment. For IBC, though, time is critical. It's generally a fast-growing cancer, and the sooner treatment is started, the better.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 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 10, 2019 05:46AM Flo80 wrote:

Thank you so much. I have an appointment with my oncologist tomorrow and hopefully they will start the treatment soon

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Jul 10, 2019 02:07PM Flo80 wrote:

Hi Guys,

Another question as I have my first Oncologist appointment tomorrow. Can you guys tell me what the oncologist will say. I have met my surgeon and did the all the ct scans which came clear. I got my echocardiogram done today as well. Just getting nervous for tomorrow.

Regards

Flira

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Jul 10, 2019 02:20PM LoriCA wrote:

Sounds to me like there needs to be some conversation between your oncologist and your surgeon because your surgeon is rightly concerned about performing surgery first if you do have IBC. Do you have any other symptoms besides the skin thickening shown on the MRI (redness, swelling, peau d'orage, etc)? If you have redness and swelling, it's a good bet that your surgeon will stand firm on recommending chemo first even though your punch biopsy came back negative. If you don't have any other symptoms of IBC and the biopsy was negative, they could decide to do the surgery first.

Good luck and let us know how it goes.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, 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 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 10, 2019 02:56PM Flo80 wrote:

Hi Lori,

I do have redness and peel de orange but very little and has not increased a lot. Before my clinical diagnosis with IBC my family doctor told me that it can happen because of the tumour irritation as well. My MRI showed skin thickness and size of 5.2 and I believe they might want to shrink the tumour as well. I am okay with anything just want to get treatment started. I am just getting nervous about tomorrow.

Thank you so much Lori.



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Jul 10, 2019 08:22PM LoriCA wrote:

Flora I know how unsettling everything can be right after diagnosis, but I think you'll find like many of us that once you consult with your oncologist and have a treatment plan in place, most of that nervousness will go away too. Good luck and let us know how things go.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, 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 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 10, 2019 08:30PM Flo80 wrote:

thank you so much Lori but what does the oncologist usually say . Do they discuss the treatment plan as the diagnosis is already done by the surgeon. Thank you Lori for all your hel

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Jul 10, 2019 08:43PM Newfromny wrote:

Flora your case sounds very similar to mine, clinical diagnosis because the punch biopsy came back negative, but had redness and what probably was peel de orange, doctors were never sure but treated it as IBC, chemo, surgery, radiation. So far treatment has been successful had complete response to chemo, still have herceptin perjeta every 3 weeks. You’ll feel better once they start treatment

Dx 10/2/2018, IDC, Left, 5cm, Stage IIB, Grade 3, ER+/PR+, HER2+ Chemotherapy 10/26/2018 Other
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Jul 10, 2019 09:31PM Flo80 wrote:

Thank you so much. I agree and I wish they just start my chemo as soon as possible. I got the echocardiogram done today as they wanted to see that before they roll out my treatment plan. I am seeing my oncologist tomorrow and then the radiologist on Friday. Hope they start the chemotherapy from Friday or Monday. I am happy the treatment is working for you and wish you a speedy recovery. I wish all the members of this group recover from this.

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Jul 11, 2019 11:05AM - edited Jul 11, 2019 04:00PM by amarantha

Hi Folks, well I'm home after three opps I meant two months in the hospital, continuing treatment on decadron daily, and chemotherapy (but what ? when ?, hmmm some unknowns). I feel like a paper doll. I can take pain med boosters every two hours. This is very trying on my husband and my relationship. It has been just awful. But Ok so I can still take a joke. Love to all.

IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Jul 11, 2019 12:25PM LoriCA wrote:

Amarantha I'm glad to hear that you are home, I'm sure that after 3 months in the hospital it must feel so good to be back in your own place. I can only imagine the stress all of this is putting on you and your husband. Do you have a nurse or some kind of help at home, any family nearby? Please remember that you two can't do everything by yourselves, especially with the emotional toll you are going through. It was a lesson that my husband and I had to learn the hard way when I went through a rough patch. Sending you much love and healing thoughts!

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, 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 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 11, 2019 04:02PM amarantha wrote:

I feel like my life is over and my relationship is over. Not sure how how to find the silver lining in this.


IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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Jul 11, 2019 04:44PM Traveltext wrote:

Oh, Amarantha, you are at your lowest right now and I certainly understand how crappy you must feel. Conserve your energy for yourself and let hubby understand that he has to fend for himself right now. Are you mobile at home? Do you have enough books and videos to entertain yourself? I wish you were closer. Best wishes.


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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Jul 11, 2019 05:19PM sbelizabeth wrote:

Amarantha, dear friend, Traveltext is right. You're exhausted, in pain, and at a low ebb. It's time to climb up on the raft and rest, and let others hold you afloat. I, too, wish you weren't so far away.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 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 11, 2019 08:20PM Flo80 wrote:

Hi Amarantha,

I wish I stayed close to your place and help out in any way. I wish you feel better soon. You have amazing strength and you will cross this time.

Regards

Flura

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Jul 11, 2019 08:22PM Flo80 wrote:

Hi Newfromny,

My Oncologist told me it’s not IBC but the treatment they will do will be like IBC . I have been having costeochondritis from two years now and today while walking I had chest pain and tightness. My ct scans are clear and echocardiogram yesterday was clear as well. They will give me chemotherapy from tomorrow that is AC first.

Thank

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Jul 11, 2019 10:32PM Leslie2010 wrote:

Amaranth, I am not a good writer like you, so please bear with me... Following is based on a true story, On my second round of chemo, I excitedly got out my first iPad which was my long waited X’mas present. I noticed people were checking out my iPad, I smiled back. After a while, the oncologist nurse came to me and asked me whether I would like to practice spanish with her. I looked down and found my earphones was not plugged in, realized finally why I had to turn on the volume so much.

I, too, wish you were closer. You are such an amazing lady. Please hold on to that spark in your heart which I admire so much. My now ex’s alcoholism was spiraling down during my treatment time, there were so many times my heart was broken into pieces and wondered what I was fighting for. Years later my therapist advised me, actually he loved me so much that was the only way he knew how to cope. In my heart, I knew at the time and wished I had accepted that, and held on to the love not hopelessness during treatment.

You are in my thoughts and prayers! Gentle air hugs....
Dx 12/15/2010, IBC, Left, 6cm+, Stage IIIB, Grade 2, 0/4 nodes, ER-/PR-, HER2- (FISH)

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