Join Us

We are 216,296 members in 84 forums discussing 160,162 topics.

Help with Abbreviations

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 67 of 67 (1,997 results)

Posts 1981 - 1997 (1,997 total)

Log in to post a reply

May 27, 2020 03:15AM Shela2020 wrote:

HI Blue: So happy to hear your bx was negative. My sisters next chemo is June 3.I gave her some suggestions that I got from all of you guys of course :) I think she will have a less eventful session with the pre meds.I will let you know and Thank you for asking.

Lori: I am happy to hear from you.You are a great help with your extensive knowledge. I will relay the advice to my sister and keep updating. Hope your scans and tests are good results.

Flo: Hope you are doing well. Are you in Canada? We are from Vancouver.

Stay strong and healthy. You are all SuperWomen and Men. Kindly 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)
Log in to post a reply

Jun 12, 2020 06:50PM sbelizabeth wrote:

It's been a while since we checked in and said hi. I hope everyone's doing OK, despite the world being on fire right now. 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
Log in to post a reply

Jun 14, 2020 04:10PM Shela2020 wrote:

Hi SB, This is Shela ( I PM'd) you a while back)

Thanks for checking in. My sister has only 2 chemo session left ! She is getting a pet scan Jul 31st and a tentative surgery date of Aug 11th.

Hope she gets great " unlit" pet scan.

Take 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)
Log in to post a reply

Jun 14, 2020 04:26PM Traveltext wrote:

Hi SBE. All fine here. The virus appears to be under control and people are just getting their lives back to normal after two months of self-isolation. The nation’s low death toll (102) is likely down to an early shutdown.

I was remembering Amarantha recently and can see no posts from her on BCO after October. If anyone has info on her, please post it. I fear she has passed and it would be good to let the community here know this news. This is such a shitty disease, and I’m ever mindful that bad news is as common as good. 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.

Log in to post a reply

Jun 15, 2020 02:05AM BSandra wrote:

Dear All, my wife is fine. All good scans at the end of May. Don't remember if I posted it here. How's LoriCA, it is always so good to hear from her... Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: 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
Log in to post a reply

Jun 15, 2020 02:28PM LoriCA wrote:

The past few weeks have felt like a blur to me, a non-stop barrage of scans and lately everything requires two visits to the hospital or cancer center, bleh. I wish this was easier. Insurance would only approve a CT scan this time instead of a PET/CT, which was really stupid because CT report didn't state any comparison of tumor size(s), only that they were still there, and of course doesn't show uptake values which has been important in the past to know when my cancer started spreading fast again. Anyway, my oncologist said it shows nothing improved but nothing drastically worse, and there are two new areas of concern - the bone marrow that he suspected and now my thyroid too. Next is MRI of both brain and spine. New pain meds to try to get the headaches under control because they are really messing up my life. If we can get the headaches under control I'll be doing okay. I've been focusing on my garden to keep busy when I'm not at the cancer center. Still only leaving the house for medical appointments because cases/hospitalizations are rising here, our death rate is at an all-time high, and there's an ugly backlash against masks and social distancing.

TT I believe the same about Amarantha but I don't know her real name to check. A few months ago I had even spent several hours on the opera website she was writing for to see if I could figure out who she was, but no luck.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. 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)
Log in to post a reply

Jun 15, 2020 03:54PM Valstim52 wrote:

Hello All

I've been off the boards a while. Im going on my 6th year NED with triple negative/inflammatory bc. Whew a mouthful. I do lurk, been as busy as possible with being in quarantine. As many have stated, as cancer patients we are used to being indoors, sequestered.

TT i too am thinking of Aramantha. I fear she has passed. I'm going over some private messages she sent me a couple of years back. I hope i can find her name.

LoriCA as well as others you are a true inspiration. I wish all the best.

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

Jun 16, 2020 12:04AM sbelizabeth wrote:

I miss Amarantha too. What an amazing woman. I hope someone can discover the details, like all of us here. I fear she has passed.

Didn't she make us laugh, and marvel at her exploits and travels?!

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
Log in to post a reply

Jun 22, 2020 09:25PM Flo80 wrote:

Hi All. Sorry have been so busy lately and at times I just hide in my own world. The thoughts of cancer is always on the back of my mind and every ache and pain pushes me even further into a dark place. Lori as always I keep looking for your posts and all the lovely people here.

Wishing you all a blessd week ahead.

Flira

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
Log in to post a reply

Jun 23, 2020 01:40AM Shela2020 wrote:

Hi Flo

Sorry to hear things are difficult right no. I can only empathize, but in my own sufferings I have learned to file your thoughts away in a box and lock it until you are ready to deal with each box. I know it sounds silly, but it has helped me, during a very scary time in my life. Although, I did not have cancer I had a serious bilateral pulmonary embolism which almost took my life. I used this coping trick during hospital stay to help with the anxiety and isolation I felt.

I really hope you can find strength and know that we all support you and I am a great listener. You are always so polite and I am blessed to be a part of this forum.

By the way, are you from Canada and where? My sister and I are from Vancouver.

Take good care :) As I say to my sister, Please be kind to yourself.

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)
Log in to post a reply

Jun 25, 2020 09:03PM blue22 wrote:

Hi Flo,

I completely understand. I think many people around us don't, especially friends and family. My mom made some comment a while back about some minor issues she was having with her feet, and said something to the effect of "I hope you don't have to deal with this when you are my age". It pissed me off, and my response was that most likely I will die long before that. She seemed a bit taken aback, but hell, her feet issues are a joke compared to what we have been through and continue to go through. It has been over a year an I am still getting treatment and still dealing with side effects and am so tired of it all.

I don't know how to deal with the looming threat of the cancer returning. Right now I am just focusing on getting finished with treatment, but at some point I will have to figure out how to live with it.

Shela - I agree with the put it in a box comment - that is what I do. I learned that technique really well thanks to a bad childhood.

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 Chemotherapy Xeloda (capecitabine) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
Log in to post a reply

Jun 27, 2020 02:13AM Shela2020 wrote:

Hi Blue

Glad to hear from you. I wish I knew how to help. I see how difficult this is for my sister and sometimes all I can do is just listen. She is triple positive like you and finding some of the side effects unbearable some days.

I truly wish you well and offer you support and love🥰

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)
Log in to post a reply

Jun 28, 2020 06:27PM Shela2020 wrote:

Hi Everyone,

Has anyone had radiation prior to mastectomy?

Thanks

Hope everyone is well.

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)
Log in to post a reply

Jun 28, 2020 06:36PM Traveltext wrote:

Hey Shela, Never heard of this. What's the rationale?


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

Jun 29, 2020 02:22AM Shela2020 wrote:

HI Traveltext,

My sister mentioned she may require it before surgery.?? She meets with RO and surgeon in the next 2 weks. I will find out, and keep you posted.

Thanks for replying.

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)
Log in to post a reply

Jun 29, 2020 07:35PM blue22 wrote:

Hi Shela,

My memory is terrible these days, but I recall this was discussed for me because of the worry that even after chemo my skin was still affected. My skin was still showed symptoms of IBC. I also recall they really did not want to do radiation prior to surgery, as it can cause issues with healing from surgery. They did a punch biopsy after I finished Taxol and AC, and luckily the post-chemo punch biopsy came back negative so I was able to have surgery prior to radiation.

Where is your sister in her treatment? Is she does with AC & Taxol? Are they seeing a good response?

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 Chemotherapy Xeloda (capecitabine) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
Log in to post a reply

Jun 30, 2020 04:33AM Shela2020 wrote:

Hi Blue,

My sister has done AC.She has one final round of Taxol with Herceptin and Perjecta on July 16th. Her breast is less red, pinkish, much softer but the swelling has not diminished.Still hard on one part near nipple.barely any peu d'orange left. Maybe the swelling is a concern? She meets with surgeon then Ro in the next 2 weeks. I will get more clarifiication then. Maybe her final chemo round will KO the remaining nasty cells. This past week has wiped her out. She has been in alot of pain neuropathy. She hss been taking Gabapentin with minimal effect.It sucks. I hope you are feeling better these days 🥰

Thanks for your help.

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)

Page 67 of 67 (1,997 results)