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 03:23PM

Posted on: Mar 31, 2016 03:23PM

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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Jun 10, 2022 10:15PM mamacure wrote:

Way to help science LW! I get those zingers once in awhile too. My naughty boob should have been blasted as well. Lol.
Mara, so happy to hear of your good scans!

Becky I’m so sorry to hear about your shocking pathology report. You know what? Mine was very similar with a high # of positive nodes & residual macro & micro cancer cells left. I was shocked & devastated. Especially since I had carbo & keytruda on top of taxol & AC. Ugh. My chemo brain can’t remember the exact # anymore. However my wonderful radiologist & team blasted those cells without much side effects so far. Also I was put on Xeloda for 8 cycles (6 months). It sucked to continue chemo but at least it was by pills. It has been tolerable & not as bad as the infusion chemo. I have one more cycle left then I’m done! No scans or anything! I was dreading scans because the liquids to drink are a nightmare for me. Just check ups every 3 months & pray it does notcome back. Looking back, my TNC was somewhat resistant to chemo I think. There’s options, you can do it! Stay positive & keep fighting. I’m in your pocket with Mara & others too.

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 11, 2022 08:37AM mara51506 wrote:

mamacure, glad the oral chemo has been easier and you look forward to finishing it up. No harm and making sure you don't go stage !V, that is for certain.

Yes, scans so far are good. Have another CT scan somewhere soon and an MRI which is booked for August. I do not drink the oral contrast I used to for the CT. That made me incontinent for bowel movements and I cannot put up with that. I do have the contrast injected and thus far, results are similar. I do have trouble with nausea but when I am given it, I just hold my breath until it is in and breathe slowly. Like that better than the nausea meds.

I am planning to tackle lack of physical activity (walking) by instituting 10000 steps daily for myself, mostly indoors with a couple of days of walking at the mall or at my grocery store as well. I feel no need to walk the miles I used to outside as I am a tripping hazard at times. The indoor steps will be done marching for the most part as lifting my feet helps to avoid the falls. I get the whole day and can choose to go song by sone. I am not busy so easy for me to bang off a couple of songs, get some water and get back to it. Need to lose some weight and that should help a bit.

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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Jun 11, 2022 11:02PM mamacure wrote:

Oh thanks Mara! I will ask about the contrast dye injection, I think I had a blue one before for bone scans. I much prefer that to drinking the nasty liquid. Indoor marching is a good idea. I sometimes walk around my kitchen island & do 10 squats. I need to do more stretching too. It rains all the time here so indoor work outs are great. Whenever I bend down & get up, I feel very dizzy. My stamina is down for sure. I wish you continued stable scans Mara. Take care.

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 20, 2022 06:29PM preciousbecky23 wrote:

Hi everyone! Sorry for not posting in a while, that path report really knocked me for a loop and I’m honestly still pretty upset about it. I appreciate everyone’s thoughts and support. I actually just had my first radiation treatment this morning. I go to Hopkins and am doing proton therapy with a plan for 33 treatments (I believe the dose is 66 gray?) Anyways, hopefully that’ll zap any remaining cells locally. My incision looks great minus a little puffiness at the end under my arm, but I think it’s worsened by the fact that it’s right where the seam of my bras are. My arm is doing so much better as far as strength, range of motion and nerve pain/numbness. It gets better everyday and my physical therapist is incredible. No signs of lymphedema. I’m still going to need more systemic treatment once rads is done so contemplating Xeloda vs clinical trial route. Will keep ya’ll posted on how things go!

Take care everyone!

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Jun 21, 2022 09:57AM lw422 wrote:

So glad to hear from you, Becky! Radiation is a drag... mostly because of all the daily trips to the facility. But it will go by fast and soon you'll be done with it! I'm happy that you are getting better range of motion and reduced pain/numbness. Let us know how it goes.

Mamacure--how's the X going... are you done yet?

I'm doing pretty well these days. I can't believe how fast this year is going by! Last year I was dealing with AC chemo and doing a lot of whining. I hope all the IBCers are doing great and enjoying life. Check in when you are able and let us know how it's going.

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Jun 23, 2022 06:09PM mara51506 wrote:

Wow Becky, 33 is a definite marathon. I had 25 as I remember on the breast wall post chemo. Glad range of motion is returning for 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 4/22/2015 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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4 hours ago mamacure wrote:

Hello everyone! I am officially done with Xeloda as of last night!! Woo hoo yippee! My supportive friend surprised me with a strawberry cake & flowers!! X was much more tolerable than expected with very mild nausea. I’ll be praying & eating cancer fighting foods now on. Thanks everyone!

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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28 minutes ago traveltext2 wrote:

Congratulations mamacure. All the best for the future.

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