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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 7/22/2015 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 03:18PM 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 06:08AM 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 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Sep 30, 2020 07:20AM 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 08:27AM 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 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Sep 30, 2020 03:20PM 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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Oct 1, 2020 01:45AM 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 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Oct 3, 2020 05:47PM 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 Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Oct 4, 2020 05:06AM 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 09:05AM 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 5, 2020 01:28AM 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 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Nov 3, 2020 06:19PM Valstim52 wrote:

HI Lori

Glad to hear from you. HOpe all goes well. Waving to traveltext and all others.

I am 5 years since diagnosis. Never thought I'd see the day .

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Nov 3, 2020 07:36PM Traveltext wrote:

Congrats Valstim, that’s a real milestone for the TN version of this disease. Hooray to the end of Pinktober. Best wishes to all.


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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Nov 11, 2020 08:37PM - edited Nov 11, 2020 08:38PM by Flo80

This Post was deleted by Flo80.
Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Nov 11, 2020 08:39PM Flo80 wrote:

Valstim congratulations

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Nov 11, 2020 08:41PM - edited Nov 11, 2020 08:42PM by Flo80

This Post was deleted by Flo80.
Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Nov 11, 2020 08:43PM Flo80 wrote:

Travelnext please convey my wishes to Lori. Tell her we miss her and always think about her

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Nov 13, 2020 12:07AM Traveltext wrote:

Flo80, Yes, I've done that. Lori is still settling in to her new house and slowing getting set up. She will be back in treatment in a couple of months.



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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Nov 18, 2020 08:00PM Flo80 wrote:

Travelnext thank you so much

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Dec 4, 2020 01:55AM - edited Dec 4, 2020 01:59AM by Shela2020

A warm hello to all

Hope everyone is keeping well and safe.My sister has completed her final radiation session last week on a happy note.But unfortunately the breast skin is terribly burnt and painful. She has tried a cream called Secura 80% water hospital grade cream and Aveeno without relief.

Any suggestions? How long does it usually take for skin to heal?

Masectomy Aug 12, 2020

Thanking you in advance.

Shela


Nd Dx 3/3/2020, IBC, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 3/20/2020 AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Dec 4, 2020 02:13AM BSandra wrote:

Dear Shela2020, as for my wife, our NCI hospital gave some special cream after radiation. They produce it themselves but it worked really good. Maybe your hospital also has something like this? 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 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Dec 4, 2020 11:11AM sbelizabeth wrote:

Shela2020, is your sister's skin red and painful, or are there open, weeping wounds?

When my skin was red and sore I used several creams--calendula, biafene, aquaphor. None of them helped very much, although all of them kept the skin moisturized. When a huge "radiation dermatitis" wound opened up the oncologist gave me special dressings, Vigilon, to apply. They helped, but the open wound took several months to heal.

Radiation damage to the skin just takes a long time to clear up. The damaged skin heals very, very slowly. It's just the price we have to pay for this powerful weapon against recurrence.

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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Dec 15, 2020 12:09AM Shela2020 wrote:

Good evening everyone,

Thanks for your advice SBElizabeth and BSandra. Thank Goodness, my sister's skin did not have open wounds. She finally found some relief with a cream called Sudocrem. It is a cream for diaper rash believe or not with the most prominent ingredient being zinc oxide. The other creams she tried irritated the skin and increased the " burning and redness" At this point I am very grateful this simple creme worked! She did follow up with her MO and surgeon and they are happy with her completed treatments. As SB mentioned, both Dr.'s also said it is a long healing process but worth it in the end! She will continue with Herceptin treatments every 3 weeks until May.

Always grateful for your support.

Happy Holidays !

Shela

Nd Dx 3/3/2020, IBC, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 3/20/2020 AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Dec 20, 2020 03:35PM Valstim52 wrote:

Hello

AS some on the boards may remember, I had horrible sores/wounds during my rads. Silvadene cream is the only thing that helped. Also MY Girls cream helped before sores opened.

Sending virtual hugs your way

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Jan 11, 2021 02:49PM LoriCA wrote:

Checking in, sorry for my long absence. Moving to another state was a lot to handle with everything else I had going on, including a really miserable time when I first started Enhertu. Thankfully my new care team got that handled right away once I got all of my insurance issues straightened out. We finally have the nausea under control and my weight has stabilized for the most part (although last weigh in showed that I lost another 3 pounds).

Life has just been crazy hectic. I still haven't finished unpacking. I have a lot of chores to do almost every day with snow removal and wood stacking, etc. I've adjusted well to the sub-zero temperature, and I got a new puppy last week. More work haha! But I think it's been good for me to have get fresh air and exercise every day, no excuses. It helps keep my mind focused too.

Valstim I used the Silvadene cream too (when my IBC started oozing) and that stuff was amazing.


Well I just wanted to pop in and say hi. Seems like it's been awfully quiet in here, hope everyone is doing well.

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 Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Jan 12, 2021 01:59AM BSandra wrote:

Dear Lori, wow, you are tough as stone - moving, blood in brain, Enhertu SE... who are you really? And... we are so happy to see you here... I hope Enhertu continues to work for a long long time. You deserve it. Biggest hugs, 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 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 12, 2021 04:11AM Traveltext wrote:

Yes, Lori is a tough one. Thanks for the news update. Who goes from the sun of CA to the deep snow of WY? Lori does! Still unpacking, shovelling deep snow, and now a new puppy. Oh a a few rounds of chemo to boot. You are an inspiration.

Things have been quiet here lately. Sometimes quiet is good, since no news is often good news. Anyway, we have a new year ahead of us and I hope and wish for the best for us all.


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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Jan 12, 2021 12:58PM Shela2020 wrote:

Welcome back Lori, So happy to hear from you. Congratulations on your new home. Hopefully Enhertu takes it easier on you and keeps you strong and healthy. Your courage is admirable and I truly missed your posts! Just knowing you are doing okay has made me smile today! Puppies are the best medicine. What kind of dog did you get? I am an avid dog lover and I have a 2 yr old American Bulldog x Mastiff. She is a 70lb lap dog.

Take good care.

Shela

Nd Dx 3/3/2020, IBC, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 3/20/2020 AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Jan 12, 2021 05:53PM sbelizabeth wrote:

Lori, it's SO good to hear from you. I can only imagine the chaos you're experiencing these days! We are Colorado natives but spent 20 years in California for a job. When we moved back home 2 years ago we were so happy to see autumn colors and snow we almost cried. I'm STILL not 100% unpacked, after more than 2 years here and no chemo excuse! Give yourself all the time you need.

Colorado is pretty close to Wyoming, so if your weight drops and you need a body fat donation, just let me know. I'll be there quick. SB

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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Jan 16, 2021 01:06PM blue22 wrote:

Hi Lori,

Glad to hear from you! I know from personal experience moving during treatment is not fun... Luckily I had family visit and my husband and daughter were also able to do most of the work not done by movers etc. But I like to do moving in a very organized (OCD level) fashion, forget that when you are getting treatment!

I hope you are enjoying Wyoming! It is great that you are getting plenty of fresh air! Sounds like you are doing pretty well overall!

Blue



Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jan 16, 2021 01:11PM blue22 wrote:

It is now two years since I was diagnosed with cancer. Time flies.


Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)

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