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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.

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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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Nov 21, 2017 09:44AM 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 1/10/2016 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 21, 2017 11:57AM 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/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy; 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 12:01AM - edited Nov 23, 2017 03:01AM by traveltext

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


Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery
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Nov 22, 2017 07:51PM 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 11/17/2014 Arimidex (anastrozole)
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Nov 23, 2017 03:23AM 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.


Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery
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Nov 27, 2017 01:44AM - edited Nov 27, 2017 01:45AM by traveltext


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

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


Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery
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Nov 27, 2017 08:57AM 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 01:51PM 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 1/10/2016 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 27, 2017 01:55PM 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 1/10/2016 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 27, 2017 03:09PM 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.


Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery

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