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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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Nov 19, 2017 06:40PM Traveltext wrote:

Oh bride, you're back, good on you. And back with some good stories I can see from your recent posts. Sorry to hear that your DP had a stroke, this can be a debilitating thing to have and I hope her old self returns. I had a hemorrhagic stroke 13 years ago and just lost some vision. A few weeks ago I had an ischemic one, again leaving only vision issues that I'm working on restoring. I'm thinking two strokes and two cancers is enough for now. How scary was your storm! What does getting rid of lead paint involve?

When you've finished your paper, let me know since there's some new places to publish thoughtful essays on bc topics these days. If you're on Facebook, check out The Underbelly. There's a buch of feisty gals pumping out all kind of interesting articles. And Twitter has a lot happening under #bcsm.

Really good to hear that you're passing milestones with this stupid disease.


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 21, 2017 12:44PM Valstim52 wrote:

so sorry bride about dp’s Stroke. Traveltext I missed that you had a stroke recently. I’m still not recovered from my stroke in 2016. Can be so debilitating


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 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Nov 21, 2017 02:57PM sbelizabeth wrote:

Oh, Bride, welcome back! It's so good to hear from you. I'm sorry about Deborah's stroke and and all the upheaval in your life. Sometimes we need to just float and rest on the raft while others paddle, so let us paddle for you awhile.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, 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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Nov 22, 2017 03:01AM - edited Nov 23, 2017 06:01AM by Traveltext

Valstim, sorry to hear that, what are your stroke recovery issues.


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 22, 2017 10:51PM bride wrote:

sbelizabeth, I’m really glad you’re back, I felt sad when you left. Thanks for offering to paddle :)

Valstim, like Travel Text, I’d like to know about your stroke issues and how you’re dealing with them: in part because I care and in part because I feel I might learn from your experiences.

And Travel Text, how did/are you deal with your stokes? RE: saying goodbye to my roof. I live in the foothills of the Smokies, part of the chain of mountains on the US’s east coast. In particular, I live on a not high but very steep hill — the road up it has switchbacks. When the wind sets just right and is strong enough we get a funnel effect. That means in the flatter parts of my tiny town the wind was gusting at 40mph, but on my hill, the peak gusts were around 70mph. Since we had had a lot of rain, tress were snapping off and flying everywhere. What irked me the most was that 10 years ago, Deborah and I had re-roofed the house ourselves but this time I couldn’t do more than climb up to take some photos. Just as cancer sucks, getting old sucks :)

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Nov 23, 2017 06:23AM Traveltext wrote:

I have to say that I've been lucky enough to recover well after my strokes and this is due to prompt rehabilitation. Unlike cancer where you have surgery, chemo and rads with prescriptions based on your cancer type, gene expression, etc, and you (hopefully) go into remission, strokes are just pot luck as far as effects go and hard work afterwards trying to regain as many faculties as possible. As Valstim says, they can be debilitating. They say that parts of you that don't recover in the short term, say a few months, can be lost forever. This can include speech, limb and balance issues, facial muscle issues, confusion, etc. While cancer is bad, and certainly more scary, a stroke can leave you with serious disabilities.


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 27, 2017 04:44AM - edited Nov 27, 2017 04:45AM by Traveltext


I've started a new thread on breast cancer AND strokes here:

https://community.breastcancer.org/forum/152/topic...


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 27, 2017 11:57AM Junif wrote:

Hi All--just hoping for some info. I woke up Friday morning to a breast that was completely red as in wine color red. The redness is now looping around to my side/back...sort of following a bra line--no redness in armpit but some up on my chest. I called my oncologist who has left the practice and talked to an NP who gave me antibiotics and I was supposed to go in today for an appt., but they have decided I have to go in as a new patient since I haven't been there in a few years...and I need a referral now from my GP...I sit here and wait for a phone call. My breast skin doesn't feel thick or orange peel like. Since I'm at the beginning of the antibiotics they haven't seemed to kick in yet. I'm so worried this is IBC. The breast that is affected is the same on I had BC surgery on 5 years ago. Any thoughts? Thanks, I'm just scared to to death and the medical groups here don't seem to be very responsive.


“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” MLK Jr. Dx 7/18/2012, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Nov 27, 2017 04:51PM Valstim52 wrote:

Bride and TT thanks so much for keeping me in mind. The main issue is my mobility. I have a marked weakness on my left side. I use a cane occasionally. The burning pain at night is the worst. Physical therapy is the reason I can walk so well. Cognitive memory is another one. So far other than puzzles, nothing is working. I have short term memory issues.

I will definitely check out the thread TT






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 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Nov 27, 2017 04:55PM Valstim52 wrote:

Junif , I’m no expert but I would push to be seen by someone so they can refer you sooner, even if it’s the Emergency Room. Better to raise the alarm and have it turn out false, than lose precious time.

Val


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 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Nov 27, 2017 06:09PM Traveltext wrote:

I agree with Val, best get your rash checked thoroughly. Having said that, many present on BCorg with a rash but few end up diagnosed with 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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Nov 28, 2017 12:49AM Junif wrote:

Thanks Val and Travel....my GP didn't call back today despite the fact that my request was red flagged in their computer. Tomorrow I have to try again but this is disheartening.

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” MLK Jr. Dx 7/18/2012, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Nov 30, 2017 03:50PM Kicks wrote:

Not directly IBC related - BUT thought I'd post anyway.

Saw my Dermatologist this week - good but not 100% perfect but am happy with.

I am VERY light skinned with light green eyes and have abused my skin by spending so much time outdoor (not 'sunbathing' but active) so my skin was abused. I've had a BCC on my arm and a couple of SCCs on my face (totally unrelated to IBC).

Well - when I saw my Derm., she couldn't find any areas of skin cancer but did find several areas (as I expected) of Actinic Keratosis (precancerous). So, I doing Imiquimod again to deal with those areas.

Please - to all - especially those of us who are 'more advanced' in yrs (I'm 71) to stay on top of skin issues. To all - remember to use sunscreen.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Nov 30, 2017 04:09PM Traveltext wrote:

Timely reminder from Kicks. Last week I had a SCC removed from my cheek in the doctor's clinic and path showed clear margins. Oh if BC issues were so simply dealt with.


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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Dec 1, 2017 12:07AM sbelizabeth wrote:

Very, very good advice. My hubs and I spend a lot of time riding bikes with bare arms. We wear buckets of sunblock now, but didn't for many years. He had a SCC removed from his wrist.

Sunblock for any exposed skin, every day. And we both wear sun blocking driving gloves. The rays will come right in the vehicle's window.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, 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 12, 2017 08:59AM bride wrote:

Hey TT,

Thanks for the new forum!

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Dec 13, 2017 03:54AM Traveltext wrote:


Val, that's a terrible list of stroke side effects and I really hope that you can regain more of your faculties, and especially make progress with your memory issues. Is there nothing you can take for the night pain? I'm fortunate in that, six weeks post the event, I just have double vision to deal with. I've had some prism glasses made up and that is a short-term corrective, but I need full recovery to get back to driving.

Happy Holiday Season. Let's hope 2018 is a good one 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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Dec 13, 2017 09:12AM amarantha wrote:

Dear Kicks, do please keep us posted on how the Imiquimod works for you. I have tried to persuade my onco to let me try it for the skin mets of bc on my ex-left breast, but no luck.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Dec 14, 2017 02:02PM Valstim52 wrote:

yes TT I have things for the pain. Both conventional and homeopathic. I’m handling them for the most part well.

I’m grateful to be 2 years from diagnosis, and so far NED.

It’s a daily battle to not spend time dwelling on this new state of living I find myself facing. Longing for my prior strength and energy etc. I’m learning patience and acceptance. I often think if I suddenly had a recurrence, how I would have wished i’d Lived life with more gusto.

Just my thought


Val


Easier said than done. BCO is a godsend for me.

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 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Dec 14, 2017 04:06PM Traveltext wrote:

Val, congrats on the two-year NED anniversary. You're right about patience and acceptance but, as you suggest, we need to live life to the fullest. Having had a couple of strokes and a couple of cancers, I'm now seeing the latter in a more favourable light because we get, relatively speaking, a fair time in continued treatment if we get mets. With a stroke, however, we are a hair's breadth away from real debilitation that can destroy brain and body function and make living with gusto an impossibility. Meanwhile, I strive to make each day a good one, love, laugh, eat well, exercise, and count my many blessings. And, very importantly, I read a lot, fiction, nonfiction, cereal boxes, whatever. If I were to lose this faculty, I really would be up shit creek!



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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Dec 24, 2017 11:59PM Meadow wrote:

Hi all, popping in to say Merry Christmas to you all. Hugs to each one!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Dec 25, 2017 02:48AM Traveltext wrote:

Thanks Meadow, and back to you. How's that lovely van going?


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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Dec 27, 2017 11:36AM MoreShoes wrote:

Hope you all enjoy the holidays. May the 2018 is another NED year!



Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Dec 31, 2017 04:42AM minimoocher wrote:

Hi everyone, I have not been on for a while as I was undergoing eligibility testing for a clinical trial after Kadcyla was no longer working. The good news is that I have now started the Her2climb trial. Just had cycle 1 so far. It's a phase 2, double blind trial. I feel very lucky to have qualified for it.

Here's hoping 2018 is going to be a good year for us all,

Mini x



Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/7/2016 Taxotere (docetaxel) Targeted Therapy 3/7/2016 Perjeta (pertuzumab) Targeted Therapy 3/7/2016 Herceptin (trastuzumab) Surgery 7/19/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/1/2016 Herceptin (trastuzumab) Targeted Therapy 8/1/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/19/2016 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy 12/10/2017 Xeloda (capecitabine) Targeted Therapy Herceptin (trastuzumab)
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Dec 31, 2017 05:40PM Traveltext wrote:

MoreShoes, you're a TN heroine. Good luck for the year.

Mini, so pleased that you're on the Her2climb trial and good luck. Let us know how you go.

HNY 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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Jan 2, 2018 04:36PM - edited Jan 2, 2018 04:37PM by mara51506

Good news on the her2climb trial Mini. I am excited about that drug tucatinib since it is small enough to cross the blood-brain barrier. Would be nice to have options for us brain mets gals/guys as well besides radiation or surgery.

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: Sentinel; 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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Jan 2, 2018 05:39PM amarantha wrote:

Wow, Mara, it is exciting to hear about new hopeful drugs. I'll be looking forward to hearing more about how this works out. Good luck.

current treatment - Halaven for IBC recurrence w mets -bone, skin, lymph nodes; past treatments - mastectomy x 2, neoadjuvant chemo-radiation w Cisplatin x2; Halaven, Afinitor, Ibrance, Faslodex, Tamoxifen, etc.
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Jan 2, 2018 07:35PM mara51506 wrote:

Amarantha, I agree totally. The more drugs we have to use, the better chance we have at a longer life.

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: Sentinel; 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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Feb 17, 2018 01:32PM bride wrote:

Just checking in, honestly, I’ve been overwhelmed by dealing with insurance about storm damage to our house, trying to figure out how to handle my dp’s labile and often angry emotions, and finding out that I’ve gone from osteopenia to osteoporosis.

Other than that, I’m ok. Very glad to see most of us. Are hanging in there. If I could slow my life down a bit, I’ll be here — I miss you all.

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Feb 17, 2018 02:42PM bride wrote:

FYI, I just started a new topic in chemo: before, during, and after about the lawsuit against the makers of Taxotere who knowingly lied about Taxotere elevating the risk of hair loss or thinning and the loss of important hair such as eyelashes, eyebrows, and nasal hair. I’m on eye drops and meds because I’ve lost the protection against nasty stuff than my eyelashes and nasal hair used to keep out. And yes, over 3 years past treatment, my hair is much, much thinner.

I doubt I’ll see any money from the suit which currently has 2,400 claimants. But I’m outraged that the makers of Taxotere put profit ahead of truth and patient wellbeing.

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)

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