We are 209,651 members in 82 forums discussing 150,638 topics.

Help with Abbreviations

All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: IBC lounge: roll call, support and just a good place to hang out

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 7/21/2015 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
Log in to post a reply

Page 37 of 37 (1,099 results)

Posts 1081 - 1099 (1,099 total)

Log in to post a reply

Jul 27, 2018 08:26AM Traveltext wrote:

NBCC Project Lead 2018 is winding up in San Diego today. I've had six incredible days of learning with 42 people, including 8 strong mets survivors (Victoria and Chiara are shown here), 10 dynamic Black women, and one other man. We all have one goal, to advocate for those living with all stages of breast cancer.


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.

Log in to post a reply

Jul 27, 2018 09:00AM Fran2014 wrote:

Traveltext- I'm so very glad to hear that the conference was both informative and enjoyable. I know our online group will definitely be using you as a resource with all the information you have gathered! Safe travels home!!!!

Log in to post a reply

Jul 28, 2018 06:16PM amarantha wrote:

Traveltext what a great group of people, I'm psyched (do people still say that ?) that you are out there advocating for us all.

I have just two more days (of mental torture) waiting to see my oncologist after my five week ordeal of chemo-radiation. I'm dying to see what she will have to say.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
Log in to post a reply

Jul 28, 2018 09:24PM Traveltext wrote:

Not sure anyone still says psyched amarantha, but so what. How does your breast feel now? How does it look? Obviously your surgeon wants to operate. Be sure to ask for him/her to be there with the oncologist when the decision is to be made. Are you able to get pain relief meanwhile?


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.

Log in to post a reply

Jul 29, 2018 04:23AM amarantha wrote:

Hi TT, the breast is still all red, very hard and swollen, although a bit whiter and softer near the edges.

I have a meeting with the surgeon but not until the 30th of August, the radiologist wants us to wait a full month before showing it to the surgeon to see if he thinks surgery is possible (he did have a meeting with him last week and the oncologist), because at this point surgery is still out of the question.

I am hoping the oncologist will be more optimistic, she always is. And hoping that in four weeks it will not be ten times worse.

Meanwhile I think we MUST start doing something for the left side or I'm toast. And if they can't do surgery in the right breast I think I'm major toast.

My worst fear is that they will send me home and say we cannot do anything more. But they wouldn't do that, would they ? as long as I am willing to keep trying stuff ?

There is some pain in the breast, not a bother, but I'm still dragging from the weeks of chemo and radiation, still waking up slightly nauseated and headachy, and it is taking me much longer than I ever imagined to attack my piles and piles of housework. Husband helps when I ask him, but needs to be trained (isn't that cute) but he is 82 and often very tired, and I always feel I ought to spare him as much as possible. We work it out between the two of us, taking turns being miserable, ahahah.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
Log in to post a reply

Jul 29, 2018 03:59PM Valstim52 wrote:

Amarantha your courage is amazing. Courage does not mean we are not afraid, but we face the things we need to. I salute you.

Travel Text what a fantastic opportunity. So pleased it was a success and happy to see your picture.

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
Log in to post a reply

Jul 29, 2018 11:53PM LoriCA wrote:

Hi all, catching up after a wonderful ten day vacation in Wyoming. I feel like a brand new person after recharging my batteries in beautiful nature!

TravelText I hope you enjoyed your visit here and found the conference productive. They gave you a lame answer for your question!!

Sweet Amarantha, I don't know what to say. You keep a wonderful attitude but I know that deep inside you must be going through hell and my heart aches for you. I hope that a few weeks to recover from the chemo and rads will have you feeling better and allow you to have the surgery. As for the housework, sometimes it's more than the two of you can handle alone,my husband and I had to learn that the hard way when he almost had a breakdown trying to care for me, the house and a full-time business. Hopefully you have people/family you can ask for help, or community resources? If you were in the US I could point you to some organizations, but I'm afraid I know nothing about what may be available in your country.

Waving hello to everyone else! And btw, I still say psyched hahaha!

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
Log in to post a reply

Jul 30, 2018 01:28AM Traveltext wrote:

Amarantha, what a dreadful trial your bc has turned into. One thing is for sure, they won’t do nothing and send you home. Their first priority must be to get your pain under control. You may need a port-a-cath for one or both sides so that pain relief drugs can be admistered on demand. And while I can understand them wanting to give the drugs time to work, I’d ask them what plan B is if the chemo is obviously not working. Be sure to ask every question you can think of, including clarification of your prognosis. It is your right as a patient to be given a clear plan for what could eventually become palliative care.

Welcome back LoriCA. Sounds like you are full of beans again. I had a great time with all those strong women and we all bonded as you can imagine. The one drawback was that my roommate Kirby, the other guy there, sleept hooked up to a sleep apnea machine that made a terrible racket quite often. I’m at LA Airport waiting for my flight to Brisbane.

Val, nice to hear from you

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.

Log in to post a reply

Jul 30, 2018 11:13AM MoreShoes wrote:

Traveltext, what a great opportunity to be there. I'm glad you enjoyed yourself and learned more things. I agree with Lori that they gave you a general answer to a very good question.

Amarantha, keep on fighting. I hope you get some decent answers from the oncologist.

I'm going to Greece for three weeks. Vacation with the whole family before I have again a scan and get confronted with this sh***y situation.

Enjoy every day my friends and if you need to cry, just do it.

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-
Log in to post a reply

Aug 1, 2018 05:11PM amarantha wrote:

MoreShoes, Traveltext, LoriCa, Valstim, Fran et al, thank you so much for your incredible support and encouragement. This is just a short note to say that I saw the oncologist, as expected, she was much more encouraging than the radiology doctor, and she succeeded in moving my rendez-vous with the surgeon up ten days, because she thought a month was much too long to wait. (me too !). I didn't get much in the way of answers from her, except that if surgery cannot happen there is no plan B. On the other hand as soon as surgery is done, and I am healed, then we can start up again in treating the other side probably going back to Halaven. I had a frank discussion with her about how hard it was to get the establishment in 2013 to admit that what I had was Inflammatory Breast Cancer in the other breast. Now - different doctors and five years later they have no problem declaring what is happening in the right breast as IBC, seeing how lightening fast it developed, there was no doubt about it, IBC, and how rare it is. It is like a different world in this hospital since five years ago. I don't think they would have given me different treatment if they had called it IBC, but maybe they would have not made me wait so long to begin treatment, and would have been less lackadaisical about the whole thing when the metastasis began. I fought and fought for recognition and it is almost as if that worked against me, the more I fought the less any one listened to me. Well that was then and now is now...

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
Log in to post a reply

Aug 1, 2018 06:52PM sbelizabeth wrote:

Hi, Amarantha, lovely to see you. I'm happy to hear you'll be seeing the surgeon sooner rather than later.

I first discovered the peau d'orange texture in my breast on September 29, 2011. I didn't start chemo until December 15, because a small lump was discovered under the affected skin and it pulled everyone's attention away from the skin signs. I can't help but think that if I hadn't plodded through the delayed mammogram, ultrasound, core needle biopsy, lumpectomy...maybe, if someone had realized the skin texture was there because it was chock-a-block with tumor emboli and rushed a skin punch biopsy and immediate treatment, I wouldn't have had such extensive axillary node involvement. But as you philosophically state, then was then, and now is now. So far, I'm NED, so I won't complain. Much.

My sister's IBC was diagnosed a few months afterward. She got her port and was doing chemo within a week. Lucky girl, eh? Geez, the things we celebrate.

Sending happy vibes your direction! Wish I was there to help with the dusting and hoovering. SB

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
Log in to post a reply

Aug 1, 2018 06:56PM Traveltext wrote:

Amarantha, so glad that you have a new appointment with your surgeon. This is a crucial meeting, and let's home an operation is possible. The denial of IBC as a diagnosis five years ago is pretty bad, but if the treatment was no different, perhaps this is not important. What was important, though, was the delay in starting appropriate treatment, both then and more recently. I hope there is some official inquiry into your case. I know, this is unlikely, but you really tried your best to inform them about the IBC. Meanwhile, sit in the sun and enjoy your garden. If you can, write us some more about whatever interests you. We love your posts.


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.

Log in to post a reply

Aug 2, 2018 01:07PM LoriCA wrote:

Amarantha glad to hear that the appointment with your oncologist was encouraging. I hope things continue to improve for you over the next few weeks.

sbelizabeth I cannot believe that two members of your family have IBC given how rare it is, that certainly gives the idea that it is something in our genes/DNA, some weird genetic mutation we have, doesn't it? I'm sure it helped that you had experience with it. I made sure that my mother and my sisters were well aware of the early signs of IBC because I had never even heard of it until it happened to me, and it started out so innocuously as just what I thought was a sweat rash along the edge of my bra.

I'm very grateful that (most) doctors have become more aware of IBC and understand the need to start treatment immediately these days. If they didn't, I would most likely be dead already. I'm so sorry to hear of the experiences the two of you had a few years ago.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
Log in to post a reply

Aug 5, 2018 02:14PM amarantha wrote:

Hi sbelizabeth, LoriCA and Traveltext, thanks for the encouragement. Well it just keeps going on being too hot ! Breast keeps offering intermittent pain which I hope signals that the little cancer cells are screaming and dying (rather than the opposite !), I went swimming in my favourite lake yesterday and the day before, and admired from the bugs eye view, water striders humping; a dragonfly hovering over my head, gold and green with four golden wings, a flock of hot-air balloons of every colour spreading across the sky, the sun drowning in the lake water and turning it all the colours of mother of pearl, some Botero-esque women, a blue parasol with blue polka-dots, and a patient husband on a bench under a tree, on the shore, reading a murder mystery and waiting for me to finish my long long swim...

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
Log in to post a reply

Aug 6, 2018 11:31PM Susan0707 wrote:

just diagnosed with invasive ductal carcinoma in left breast with axilla involvement, but haven’t received full pathology report yet. Doctor says it is 80% certain it is IBC. Have to go in for MRI guided biopsy of right breast since MRI showed irregularities and my symptoms started two weeks ago. Prior to that, no mass, no CB indication.

I live in southern Calif and am trying to decide where to get treatment. So far narrowed it down to UCSF or go to Texas to MDAnderson. So difficult to try to find best place for me. Did anyone else have trouble figuring it out? I am concerned re taking too much time to start treatment, but I guess I will know more once rest of pathology report comes back.

Also having some difficulty absorbing it all, it has happened so fast. Any advice gratefully received

Log in to post a reply

Aug 7, 2018 01:00AM Traveltext wrote:

Hi Susan0707. Sorry to hear that you've likely got IBC. Since several of us are from other countries, I'd recommend posting your question on this Facebook page here:

https://www.facebook.com/talkibc/?fref=nf

I have heard that MD Anderson is one of the best places in the US to be treated for IBC since they have a dedicated IBC center. You're right, treatment needs to start asap.

Do let us know the path results and where you decide to go for treatment.


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.

Log in to post a reply

Aug 7, 2018 01:47PM LoriCA wrote:

Hi Susan, sorry about your DX. I'm in Orange County (enough of us here now from California with IBC that I'm starting to wonder if it's something in the water). Thankfully we have a wealth of first-class health care here in SoCal even if you decide not to travel to a dedicated IBC center. Since it sounds like you caught yours earlier I did, you probably have other treatments to take into consideration than I did (surgery, etc). There are pros and cons to both, but I've been very satisfied with my care here locally. As soon as they confirm your pathology they will most likely want to start chemo immediately. Nothing wrong with starting chemo here and going elsewhere for second opinion while you're deciding your next steps. Wishing you the best!

Lori

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
Log in to post a reply

Aug 7, 2018 04:02PM sbelizabeth wrote:

Hi, Susan, I'm in SoCal too--Ventura County. I agree with Lori. Get the bug-killer juice started so you can back the disease off. Don't delay. Then arrange to go see someone at MD Anderson for a consultation.

I got a 2nd opinion from an IBC expert at USC (he's currently at MD Anderson) and he and my local oncologist (UCLA) collaborated throughout my treatment. I think they're still phone colleagues, in fact. Please PM me if there's anything I can do to help. SB

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
Log in to post a reply

Aug 8, 2018 08:14AM - edited Aug 8, 2018 08:14AM by amarantha

Dear Susan, I'm so sorry you have been diagnosed with IBC. It sounds like you are good hands, and on the right track. I hope you will keep sharing with us on this thread. Wishing you the best of success for rapid and effective treatment.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)

Page 37 of 37 (1,099 results)