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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May 2, 2022 12:02PM preciousbecky23 wrote:

Hi all and thanks so much for your responses. My scans are tomorrow, wow even just typing that made my heart start racing. I know everyone here understands, and on one hand I hate that anyone does, but am also grateful we have this ability to connect with each other.

Mara- I like the idea of having a 2 week rule before worrying. I’m going to try my best to follow that advice! Since I finished chemo I feel like I’m just sitting here twiddling my thumbs waiting for surgery while any potential remaining cells are in there having a field day. It’s hard for me to sit back and wait, I like to get things done and check off boxes and move on. I need to learn to be more patient I guess.

LW- Thank you for the kind words and encouragement. I hope you’re feeling well and moving on from having to deal with this nightmare. Since you had pcr have your doctors said how much that lowers your risk of recurrence? I hope you never have to deal with any of this again!

Mamacure- congrats on the good 6 month checkup! I hope your lymphedema improves with time. My SO hasn’t mentioned anything about a sleeve to me yet but I’ve been wondering about that. I just found out the PT I’m scheduled to see pre-op is leaving 2 days after my appointment, but there's an OT there that is also certified in lymphedema therapy, now I’m wondering what the difference is (if any) between a PT and OT as far as lymphedema management goes? Are you currently on xeloda? My MO mentioned that as a possibility but I’m also looking into the ASPRIA trial if I qualify.

Thanks again and hope everyone else is doing well <3

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May 2, 2022 02:41PM lw422 wrote:

Hey MC. Nice to "see" you, and I'm sorry you had a cry yesterday... but sometimes those tears are a tension-reliever. I have my 3-month check with the MO next week, and my 1-year mammogram on the "good" side on the 19th. I'm not particularly nervous about either of those but that may change as the appointments get closer.

So you are wearing the LE sleeve all the time? I hate that for you. So far I'm not noticing any changes in my arm/hand other than some joint stiffness. In fact, since my treatment ended it seems like I have a lot of joint pains that I didn't have before treatment so I'll discuss that with my MO. I guess my biggest dread other than recurrence is lymphedema. It recently hit home to me that even though I had the lymph bypass procedure, I'll still never know whether it was effective or not. Since we can get LE 10 years after treatment... how the heck can they even quantify the results from the surgery? Anyway... I've decided to not waste time worrying about something I can't control.

As far as pCR goes... that is wonderful to hear, but after treatment ends it does leave a person with the "I'm on my own" feeling. As a TN, there are no other treatments indicated for me. I don't get scans or AIs or anything, which is kind of scary (unless I have pain or something that needs investigating). Although I must admit I'm glad I don't have to take more meds or treatments it is a bit disconcerting.

I hope everyone is doing well. Check in and let us hear from you!

Surgery 8/23/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Dx IBC/IDC, Right, Stage IIIB, ER-/PR+, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Right breast, Chest wall, Lymph nodes
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May 2, 2022 09:04PM mamacure wrote:

LW, you don’t have to get any scans at all other than annual mammogram? Wow wow I like that. My annual mamo came back clear!!!! Very dense tissue so I will be vigilant, since just finishing cycle 5 of xeloda, I figured it would be. I absolutely hate drinking that liquid for CT scans so I hope I can endure it. They gave me 2 bottles last time & I can only drink 1. I don’t want to ask but figure they will scan me after xeloda & every 3 months to start. I wear day time sleeve starting after breakfast and put on bulky nighttime one right before sleeping. I take it off middle of the night or at dawn when it gets claustrophobic or hand gets numb. Funny how you get used to it but it will be hot during the summer months & a pain to wear long sleeve shirts with it.

Mara, I’m curious what your normally eat. Please share when you can. Thanks everyone! Love hearing from you 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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May 2, 2022 10:00PM lw422 wrote:

Becky--my apologies; I meant to answer you about the pCR and recurrence rates. I believe it does lower the risk a bit but early on I decided I did not want to hear about prognosis, recurrence rates, etc. I had scared myself senseless after googling about IBC and was convinced that I was dying. Thank goodness I have a doctor who looked me in the eye and said, "you are not going to die." Of course, he had no way of knowing that, but it really helped calm me at that time. Since then, I avoid any IBC stats and any discussion of life expectancy or recurrence rates... because it only upsets me and I want to be done with "upset." Hugs to you; you're going to do great!

Mamacure--so great you got a clear mammo!! How many more cycles of Xeloda do you have? Sorry you have to deal with the LE garments; do you have much swelling? Cancer is truly the gift that keeps on giving.

Yep, that's correct. No treatment, no meds and no scans. I just see my MO every 3 months unless I have a problem. I'll see the RO on the same day I have my mammogram, and I'll see the plastic surgeon next August to get a small place on the end of my scar revised and smoothed a bit. That has to wait until a year after my surgery and I'll have to have permission of my MO to cut into the scar. It's a simple procedure that the PS will do in his office... just a snip and a few stitches I believe.

Surgery 8/23/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Dx IBC/IDC, Right, Stage IIIB, ER-/PR+, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Right breast, Chest wall, Lymph nodes
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May 4, 2022 11:41AM preciousbecky23 wrote:

Scans done yesterday and results came back right away, all good! Met with my MO right after and she reassured me that clinically I’ve had a great response, so now we wait and see what pathology shows after surgery. Less than 2 weeks to go!

Mamacure- I had to drink 2 bottles as well for the CT. First one was awful, tasted like plastic. Little did I know I could’ve requested a crystal light packet to mix in and it made all the difference with the second! Maybe they offer something like that where you get your scan done?

LW- I totally understand. I wish I could not focus on the numbers so much. I know it doesn’t do me any good, so why waste time and energy on it. I’m trying to embrace any positive news and hope for the best… easier said than done sometimes.

Hope everyone is having a great week!

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May 4, 2022 04:55PM lw422 wrote:

Oh, Becky... what GREAT news! My after-chemo scans also showed great improvement but I still held my breath until the surgical pathology was back. Everything's a waiting game with cancer. Surgery's not too bad, though the drains will drive you nuts and I imagine it will be difficult for you to not scoop up a toddler for a while. You'll have weight restrictions on how much you can lift, especially while you have drains. I just know you are going to do fine. Thanks for updating us; we're all cheering and praying for you.

Surgery 8/23/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Dx IBC/IDC, Right, Stage IIIB, ER-/PR+, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Right breast, Chest wall, Lymph nodes
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May 6, 2022 11:00AM mamacure wrote:

I’m with you LW, I don’t want to look too much into stats as everyone is unique & I am here to fight. I have 3 more Xeloda cycles to go. My wbc really improved, negative test on stomach infection plus clear mammo, I finally got some good news for once since this awful journey started. Yay. If I forget to wear my sleeve, it swells moderately. If I compare 2 arms side by side, left one is slightly larger. Also felt more swollen after a plane ride but not bad

Crystal light is a good idea, I’ll ask for that Becky. I’ll be thinking of you for your surgery. Hugs.

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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May 8, 2022 01:20AM - edited May 8, 2022 01:37AM by mara51506

I'm with the don't look into any stats deeply, whether it is recurrence, survival or anything else. It is usually older data not taking into account a person's health or any underlying issues they may have and not know about. Everyone is different anyway. Day by day is best.

Mamacure, I mostly eat things like black or pinto beans and chickpeas. I sometimes like white rice served with them or I also like to add a beefless ground to them. Usually add a sprinkle of wheat bran for a fiber boost. My seasoning is what makes the meal taste different along with how I prepare them. I use canned beans and sometimes microwave the meal until the beans explode or I fry the beans in a pan or if I want slight crunchiness, I bake everything. No more than a cup in total though. Because I layer I have to be conscious of calories. I like to add all sorts of seasonings like sloppy joe dry seasoning or a garlic parm seasoning. Italian or everything bagel, maple bacon or taco seasoning. I put a spoonful of either mayo or queso to bind everything together. Usually will chop up different veggies like mushrooms, spinach etc as well. I am not adverse to eating meat but I do like all the vitamins some of the beefless ground or vegan meats have and they are usually lower in calories as well. I am not nor would I really consider myself a cook but because I have a smaller core group of foods I like, seasoning, veggies and even the rice keep it different all the time. I have also thought about buying a packaged noodle dish and instead of using milk and butter to make a creamy pasta, boil the pasta I want to eat, save the rest for later and using the seasoning that comes with to flavour beans.

Enough of me and what I eat, I am glad that people are progressing through treatments and moving on with life as it should be.



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 10, 2022 07:16PM mamacure wrote:

Thank you Mara for the detailed look into your meals. I enjoyed reading it. Beans & rice sounds good & nutritious. I realized how I was over eating before my dx. I try to eat smaller meals now & stop the constant snacking. I’m reading ‘Eat to Beat Disease’ and eating broccoli, apples, spinach, sweet potato, a kiwi a day, etc. but also eating enjoyable things too. I crave pasta with tomatoes, capers & olives (puttunesca). I got tired of beet juice, celery juice, I prefer blueberry & banana smoothie. I still love carbs. Croissants, toast, bagels, etc. hope everyone is doing good.

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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May 10, 2022 08:27PM lw422 wrote:

Hello everyone! Hope you're all doing well. I don't check in as often now since the website is all putzed up.

Mamacure--I need to start focusing on more healthy foods but I sort of adapted the "life is short; eat the cookies" mantra after treatment ended. I always wanted to learn how to bake good bread and make artisan loaves, so I have been indulging myself and spending lots of time playing with my kitchen toys. It's really fun and I have learned to make decent breads! Of course I stepped on the scale today at my checkup and have gained 4 pounds since February... oops!! Guess I'd better hang up the measuring cups for a while!!

Speaking of my checkup; it went well. I've been having a weird nerve pain or something in my "healthy" side but my doc doesn't seem concerned about it. He did a physical exam and said everything looks and feels normal. I have my mammogram next week so I suppose if anything is going on in there they will see it (hopefully). I'm feeling pretty good all things considered.

Becky--only a week till your surgery! I imagine you're getting a little anxious; seems like the closer my surgery date came the more nervous I felt. Do you know whether you'll spend overnight in the hospital? Some patients go home the same day as their surgery nowadays. I'll be checking on you to see how you're doing, so check in when you're able.

Mara--I hope you're getting the repairs made on your apartment. I know you've had a lot of annoying things going on.


Surgery 8/23/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Dx IBC/IDC, Right, Stage IIIB, ER-/PR+, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Right breast, Chest wall, Lymph nodes

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