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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 05:23PM

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 6, 2019 09:30AM Flo80 wrote:

Hi Lito hope you are feeling better. I started donee dense Taxol today and feeling very sleepy.

Thank you once again.


Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 6, 2019 09:33AM Flo80 wrote:

Also Lotlri my onc thinks my mass reduced by half and the little redness is gone. The skin does not look thick except the areola has mild thickness.Does IBC have thickness in areola

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 6, 2019 12:13PM blue22 wrote:

Hi Flo,

I am so glad to hear that your mass has responded so well and that the redness is gone. That is great news!

I don't know if thickness in the areola is part of IBC, but I did have it throughout my treatment. I could definitely feel the difference between the two. I think I was told that could just be part of my bodies reaction to treatment, but I really don't trust my chemo brain with all of my memories... wish I had journaled through all of this...

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Sep 6, 2019 12:14PM LoriCA wrote:

Flora, not typically, but maybe it could. Symptoms involving the nipple and areola are usually associated with Paget's disease, which can also cause redness and skin thickening on the breast (and develop a lump/mass). Paget's is another rare cancer that starts in the nipple and areola. Was your areola like that from the start (was it one of your first symptoms?).

Great news that your mass shrunk in half and the redness is gone.

I think I'm the only person who isn't affected by the Benadryl used as pre-med for Taxol. The Dex (steroid) would get me so hyped up that it would keep me awake for two days straight, then I'd crash hard the following day.

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 6, 2019 02:06PM amarantha wrote:

Hey gals, I know this isn't the right thread for this but - because of the swelling from IBC of my abdomen I cannot reach myself to clean myself after a bowel movement. It all falls on my dear hubby who I am really afraid is going to get tired of this. It is not pleasant to do, and he does it, but this is an every day thing. I need to grow a longer arm, I just can't reach back there anymore. Advice ?

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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Sep 6, 2019 02:44PM sbelizabeth wrote:

Amarantha, I thought everyone in France owned and used a bidet!? Lol...gosh, I'm so sorry you're going through all this crap (no pun intended).

I don't know your hubs, but I bet he's more resilient than you know. Yes, it's no fun for him. It's no stroll along the Seine for you either, though--I bet it feels undignified and a bit humiliating to need to ask for such care. Again, I don't know, but if you guys took the same vows we did, it included language about "in sickness and in health." Growing a longer arm probably isn't going to happen, so for now, you'll just have to let him demonstrate his love for you by helping in this way.

There are bidets that are easily plumbed into the existing toilet and need no electricity. The water is straight from the water source, so it's chilly, but it may be worth a look. I don't know if the can be ordered there. In the meantime...what must be, must be.

Tushy Bidet

P.S. I'm a nurse and this care wouldn't even make me blink. I'll fly over. Be there soon.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, 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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Sep 6, 2019 08:47PM Flo80 wrote:

Thank you so much Lori. I was so off with my first Taxol as if I was having a bad hangover. No pain at all thought and it’s much better thank AC. I am experiencing hot flushes these days. Lori the skin thickening in the areola was from the start. I do not have any nipple changes though. Only after first few cycles of Ac it was dry

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 6, 2019 08:48PM Flo80 wrote:

thank you so much Blue22. I was having the areola thickening right from the start and my chemo brain is so bad I don’t remember where I keep things and why I am going to the roo

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 6, 2019 08:49PM Flo80 wrote:

Lori I Was also thinking can it be Paget’s but the mass pointed towards DCIS and IDC and MRi thickness towards IB

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 10, 2019 11:08AM - edited Sep 10, 2019 11:17AM by amarantha

Today for the first time in all my treatment since 2013 I had to skip chemo because of low plaquettes. Still I spent like five hours at the hospital snoozing and waiting for a new appointment date.


sbelizabeth thanks for the advice on Tushy Bidet. Good for at home but not for travel. My husband on his own went and bought a sort of hand held shower which does no good, sigh. I'd rather have tried the Tushy Bidet, maybe he'll be open to it anyway.

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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Sep 10, 2019 01:55PM - edited Sep 10, 2019 01:57PM by Missmom79

So I had an excisonal biopsy on Friday of my right breast and they took a fairly good size chunk. I got the results today and not only is it scattered DCIS they finally found invasive IDC after two biopsy's before that. I juts spoke with the surgeon and all along they were thinking IBC and as was the radiologist basically came right out to tell me that I had IBC. Surgeon says today on the phone that my breast did not seem as red while on the OR table. I asked if there were any cancer cells in the skin out of the sample and he said NO. And mind you he took a pretty good size chunk. I said oh ok so I don't have inflammatory breast cancer and he said well that was only a piece and it's like hit or miss. But to me it seems like out of that size they took something would have been found or no? And he says to make a diagnosis of IBC you need to have the (1)clinical symtoms and (2) an invasive cnacer inside the breast ? I thouygght it has to be dermal lymphatic invasion on the skin because isn't that how IBC pronounces itself? Then I asked him if it could be a locally advanced breast cancer and he said yes and it would be like a stage 3c.....I wish he could give me a definite answer. Is locally advanced cancer worse than IBC?

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Sep 10, 2019 03:43PM Traveltext wrote:

Missmom79, Re a IBC diagnosis. IBC is a clinical call based on the factors you mention, but it is not a simple one. For instance you can have a tumor and develop the classic IBC symptoms such as peau de orange, thickened skin, a rash, etc, or you can start with the latter (no tumor). This is when the punch biopsy is comes in handy, although as was noted, this is a random, hit and miss biopsy. My diagnosis was the former. The surgeon took one look at the breast and knew it was impossible to operate in that condition and sent me off to the onco to begin chemo. This is called neo-adjuvant treatment. IBC is automatically graded to Stage , then Stage 3B with three affected nodes or Stage 3C with more than three. All bc is bad, IBC is regarded as a worser diagnosis.

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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Sep 10, 2019 05:25PM - edited Sep 10, 2019 05:26PM by Missmom79

what about finding NO cnacer in the skin? They found 2.5 cm of IDC inside the breast

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Sep 10, 2019 05:34PM Traveltext wrote:

Different medical specialties will differ on their diagnoses, but no cancer in the skin can still lead to a clinical diagnosis of IBC.


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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Sep 10, 2019 05:48PM - edited Sep 10, 2019 05:49PM by Missmom79

oh ok. Also I guess I am Er negative and prnegative but her 2 positive. Hope that's not a bad thing. So thesurgeon says I have IBC then I guess I join you now. Ughh

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Sep 10, 2019 08:10PM - edited Sep 10, 2019 08:10PM by Flo80

Lori can Taxol cause back pain. I am having some stabbing pain in my back and here and there. I still take neulasta.

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 10, 2019 08:34PM LoriCA wrote:

Flora it could be the combination of both of them, since both drugs have bone and muscle pain as a side effect. Have you tried taking loratadine/Claritan? Many women find that it really helps with bone pain from so many of these cancer drugs. I use a combination of loratadine and ibuprofen when the bone and muscle pain gets too bad, and a heating pad can help too if it's muscle. My MO taught me that if I have back pain and I'm not sure if it's muscle or my bone mets, that if I get any relief at all from ibuprofen it's muscle, not bone.

Taxol can also be really rough on your GI system too, so depending on where on your back you are feeling the pain, it could be that. On Taxol I would get intense sharp back pain at times and I was worried that it was my kidneys because of where it was located (or worse, that it was my liver since I already had mets there), but it was just the Taxol causing havoc in my GI tract.

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 11, 2019 04:29AM Flo80 wrote:

Thank you so much Lori. Claritin did not help me much. I took two Advil yesterday and it did reduce a bit. I also have some pain in the side as we’ll and my poor feet burn as well. Trying some ice packs as well. I will call my MO as well as she had mentioned that it can cause lot of aches and pains.

Thank you so much for always and I hope you are feeling better

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 11, 2019 09:57AM LoriCA wrote:

Are you icing your feet during your taxol infusion? Taxol can cause horrible neuropathy, icing hands and feet during the infusion can help prevent it. Some people have to quit it early because the neuropathy gets so bad. I didn't know to ice the first time I did taxol, my feet still feel like they are on fire. I'm on gabapentin for the neuropathy pain.

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 12, 2019 04:40AM Flo80 wrote:

Hi Lori yes I did and looks like it helped. I still get this numbness since I get out of bed in the morning. The body pain got better with some painkiller. But back ache i get when I come back from work in the evening. Last night after dinner I felt as someone had kept some stones on me and it was so heavy that I could not walk. Don’t know this weird feeling

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 12, 2019 12:03PM LoriCA wrote:

Ugh you are working while doing chemo? I give you a lot of credit for that because that is not easy! Are you doing weekly Taxol, or every three weeks? Weekly kicked my butt, every 3 weeks was much easier on me for some reason even though it was a larger dose.

There's usually a pattern to the side effects. Two days after my taxol infusion was the steroid crash and I would sleep all day. Took me a while to learn that I had to be careful not to over-do it while I was still feeling good from the pre-meds. I would feel like superwoman for two days. My husband used to call the pre-meds my "crack" because I would get so hyped up and I couldn't even sleep for two days, and the more I overdid it, the harder the crash was a couple days later. I had to learn to smooth things out more so I didn't crash so hard.

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 12, 2019 12:49PM - edited Sep 12, 2019 12:50PM by Flo80

Thank you Lori just trying to keep my brain sane by working. I am getting dose dense Taxol every two weeks. They gave me some steroids for first 5 days a tapering dose so the active ness is fizzing away. I was able to sleep finally yesterday after Friday's cycle. I have body ache here and there and last night it felt someone put a bag of stones in my stomach and rib cage area. I felt so heavy and back pain goes less with some pain medicine they gave me. I have some chest tightness too when I walk

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 12, 2019 03:20PM LoriCA wrote:

I never heard of every two week schedule. I do know that every three week schedule matches up with my Herceptin/Perjeta schedule, so that could be one reason why many of us do every three weeks.

Five days of steroids??? No wonder you feel so horrible (as if Taxol isn't enough)! Were you having a bad reaction to the infusion to cause them to put you on steroids for five days? I got steroids (Dex) with my pre-meds and that was it. A lot of women refuse even that because steroids can really mess you up.

Hang in there, I know it really sucks. Sending a virtual hug!

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 13, 2019 11:28AM Flo80 wrote:

Thank you Lori and sending a hug back😀 I slept well finally and feel better today.

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 13, 2019 11:32AM Flo80 wrote:

I have been having some chest pain while walking at times. Had it before as well as I gave costeochondritis and the chest ct was clear do was an X-ray I had last month when I had cough. Not sure Lorry now I should worry on tgi

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 13, 2019 12:02PM LoriCA wrote:

If you are having chest pains you should tell your doctor. One thing to keep in mind before panicking though - when I mentioned how hard Taxol can be on your GI system, it can cause horrible gas pains in chest and back. If you're sure that the chest pain isn't related to that, you should report it immediately. You don't want to play around with your heart, it's better to be safe than sorry.

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 13, 2019 07:01PM Flo80 wrote:

Agreed Lori will watch.. I have again the same neulasta like pain and tightness around my chest and abdomen. It feels very heavy and tight all around my stomach and chest

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Sep 13, 2019 08:23PM LoriCA wrote:

Flora I'm sorry but I've never been on neulasta so I'm not familiar with the side effects. You might want to try posting on the Weekly Taxol thread and see if anyone there who is on both Taxol and neulasta knows more - https://community.breastcancer.org/forum/69/topics/788735?page=396#

Sorry I'm not much help :(

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 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 13, 2019 08:24PM blue22 wrote:

Hi Flo - I really hope you start feeling better soon! How many more rounds of Taxol do you have left?

I understand working during chemo, I did that too for a while, but stopped as the fatigue/chemo brain was cumulative.

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Sep 13, 2019 11:05PM Flo80 wrote:

Hi Blue22 three more. Today had a lot of heaviness in my chest and abdomen and legs and pain as if on neulasta. Last I had a neulasta shot was on Saturday. Hope you feel better with the radiation I believe it’s 30 rounds

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+

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