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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 04:23PM

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 25, 2020 01:18PM Traveltext wrote:

Here’s the statin research:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6330431/




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 30, 2020 04:08AM BSandra wrote:

Dear LoriCA, how are you? I just stumbled across several articles where they discuss Her2 heterogenity and "basal like HER2+" which is usually CK5 positive and is highly chemo/trastuzumab based drugs resistant. I wanted to ask if you were biopsy-tested for CK5?

How is everyone else doing? Hugs to everyone,

Saulius

Since Sep2019:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017: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 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Herceptin (trastuzumab) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Chemotherapy 3/11/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/8/2019 Whole-breast: Lymph nodes, Chest wall
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Sep 30, 2020 05:20AM Traveltext wrote:

BSandra, Lori is busy moving house. I’ll pass on this information to her, thanks very much. I trust all is well with you in Lithuania.


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 30, 2020 06:27AM BSandra wrote:

Uh, thanks Traveltext. We are okay, dealing with some uncertainty regarding two "changed" (visible 2-3 mm on ultrasound) N2/N3 lymphnodes. Might be nothing but we are so sensitive to anything, simply crazy:/ Saulius

Since Sep2019:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017: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 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Herceptin (trastuzumab) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Chemotherapy 3/11/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/8/2019 Whole-breast: Lymph nodes, Chest wall
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Sep 30, 2020 01:20PM Traveltext wrote:

REPLY FROM LORI

Thanks Rod, sorry that you've been playing secretary for me. My password for the forum is cookied on laptop that I packed up weeks ago (I have 3 computers & had to declutter), and I haven't been feeling well enough to try find it. Please give everyone my best next time you log on there. It's really hard on me trying to do this alone & I'm struggling. Bad time to start a new chemo ;)

I had genome sequencing done after my last biopsy through Foundation One. No relevant biomarkers at the time, but I don't recall if I have CK5 biomarker. Something for me to look into when I finally get settled if I survive the next few weeks.


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 30, 2020 11:45PM BSandra wrote:

Dear Traveltext, thanks a lot! Uh, Lori... she always smiles and works hard. Just wish she feels better and next line of therapy would work... Saulius

Since Sep2019:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017: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 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Herceptin (trastuzumab) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Chemotherapy 3/11/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/8/2019 Whole-breast: Lymph nodes, Chest wall
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Oct 3, 2020 03:47PM LoriCA wrote:

Hi everyone, sorry it's been so long since I've logged on. Bad timing all around with starting a new chemo at the same we're selling our house here and buying a new house there. Our house sold immediately for much more than we had listed it for, and all of a sudden I had more on my plate than I could handle because my husband was already in Wyoming and Enhertu has been very hard on me so far. The nausea from this drug is brutal, I lost 23 lbs in 5 weeks and I didn't need to lose any weight. Hopefully my body will adjust soon. My 3rd infusion is on Monday and I really hope it goes better than the last two.

My honey will be back home in a week for the pack up and closing and I can't wait to see him again. He's been gone for over a month. By mid-month I should be settling in to my new home. :)

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, polycythemia from bone marrow involvement 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 Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Oct 4, 2020 03:06AM Traveltext wrote:

Getting there Lori. All the best for the next infusion. Yikes, 23lbs in five weeks. Glad hubby is close to returning. You gotta send us pics of your new place.


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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Oct 4, 2020 07:05AM Flo80 wrote:

Dear Lori,

It’s so nice to hear from you. Please take care of your health and I am happy that you will be back with your husband soon. All the best of the next infusion and praying for good health and happiness.

Love

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Oct 4, 2020 11:28PM BSandra wrote:

Dear Lori, we are with you! Your smile was really what I needed for today's cloudy morning... all the best with Enhertu! Saulius

Since Sep2019:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017: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 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Herceptin (trastuzumab) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Chemotherapy 3/11/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/8/2019 Whole-breast: Lymph nodes, Chest wall

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