We are 224,869 members in 82 forums discussing 157,980 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 60 of 60 (1,796 results)

Posts 1771 - 1796 (1,796 total)

Log in to post a reply

Nov 18, 2019 04:43PM Flo80 wrote:

Lori hope you are doing well and you are the best. I am getting ready for surgery on 26. Thank you for all your support

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

Nov 18, 2019 07:04PM LoriCA wrote:

Right before Thanksgiving Flora? That doesn't seem fair (unless maybe you aren't in the US?). Hope surgery goes well and you heal quickly!

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

Nov 26, 2019 10:21PM blue22 wrote:

Finished rads today. I thought I would be excited, but I am just tired and miserable.

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)
Log in to post a reply

Nov 27, 2019 01:19AM Flo80 wrote:

I know Lori and I finished my chemo on 18. Since my surgeon was on vacation the surgery happened so late and am done with it. It was yesterday the 26 and discharged same day. How are you doing Lori

Regards

Flora

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

Nov 27, 2019 01:21AM Flo80 wrote:

Hi Blue I understand. As I finished my chemotherapy in thought I would be happy but was lost and now after sugary in painnand loatnas well.

Congratulations on finishing the treatment and I and wish for you’re good health and happiness,

Regard

Glora

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

Nov 27, 2019 02:26PM LoriCA wrote:

Blue, rads takes a lot out of you,mentally and physically. It took me months to get over the fatigue. Take good care of yourself and give your body and soul time to heal.

Flora glad to hear that your surgery is done. Hope you heal quickly with minimal pain.

I'm doing okay, just tired. I think I'm probably starting to feel the effects of 2+ years of treatment.


Hope all of my US friends have a happy Thanksgiving!

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

Nov 29, 2019 03:14AM BSandra wrote:

Dear Lori, people asked how are you but really... how're you? When are the scans coming? On Monday we got inner organ MRI results, and yesterday ultrasound results, so after 10 very difficult months we're back to NED, as they don't see anything in my wife's body. I am afraid to be happy to say frankly, as we already were in this situation, and now the scary waiting game starts again... Saulius

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Additional strategies: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK since June 2018 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 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) 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

Nov 29, 2019 12:38PM LoriCA wrote:

Just tired Saulius. The fatigue is crushing, but the side effects aren't as bad as most chemos. The earliest we would scan again would be January, unless we have reason to believe it's not working.

Glad to hear that your wife is back to NED. I hope she stays that way for a very long time. Will she be staying on Herceptin and Perjeta?

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

Nov 30, 2019 11:00AM sbelizabeth wrote:

Hi Lori. I'm sorry you're so fatigued, especially during this holiday season when we want to be DOING STUFF. Just enjoy others doing it. Sending love from Colorado. 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

Nov 30, 2019 08:36PM Flo80 wrote:

Lori Happy Thanksgiving and I hope you are feeling better. I just finished my surgery on 26 and now saw this spot on non cancer side shoulder.

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

Nov 30, 2019 09:40PM blue22 wrote:

Hi Glora, Glad to hear your surgery is done and hope you are feeling well! I well know the feeling of being lost. The healing time from surgery seemed to go pretty fast, then it was anxiously waiting to start rads.

Rads really does take a toll. I started blistering in my armpit and above a lymph node they were targeting. That area has healed, and the blistering progressed to the perimeter of the main area being targeted, then slowly inward, and now is focused on the area surrounding my scar that received a boost. I am glad my RO did not sugar coat this at all, she told me up front that I would have skin slough off, and that it would be tough.

Lori hope you are feeling more energy soon!

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)
Log in to post a reply

Dec 1, 2019 09:58PM Missmom79 wrote:

i start taxol the 4th if December for 12 weeks ugh. Worried about it


Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
Log in to post a reply

Dec 1, 2019 10:11PM - edited Dec 2, 2019 05:57AM by Traveltext

BIG TIPFOR Taxol

Ask before you start if your infusion room offers ice mittens. These worked for me in warding off neuropathy of my fingers. Insist they get them or find somewhere to hire them. You need several pairs as they are rotated in the freezer as they thaw out.

Cold caps for your hair is another option.

Good luck!


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

Dec 2, 2019 02:44AM BSandra wrote:

Dear Lori, thanks, yes we stay on HP, and pray we stay NED for long. I am so sorry you feel tired, let winter pass faster, it is such a dark and difficult time, summer will be easier. I am sure T-DM1 works for you, and next scans will be very exciting and good. Let's keep on pushing through, many new treatments are underway, we can do it! Saulius

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Additional strategies: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK since June 2018 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 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) 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

Dec 3, 2019 06:03PM Valstim52 wrote:

Hello all.

IVE REACHED 5 YEARS THIS MONTH FROM DX. I am triple negative imflammatory BC. I had the kitchen sink for treatment. this thread and others i can say saved my sanity in those early years and now I get encouragement from all who post.

I've been missing from most of the threads due to just life mainly. DD3 is expecting her second baby. My darling granddaughter is only 16 months .I've been happily helping her out.

I agree with you Traveltext. I feel FB has taken a lot from the threads. I just have found BCO has more accurate and authentic experiences. I've joined some groups on FB and they were misleading a bit about their situations. That has just been my experience. The key is to get support. I don't want to argue, or dissect other persons views or ideas about politics etc. I found a lot of that on face book. Again just my 1 cents worth.

virtual hugs to all. Im sending hugs to all and especially to Aramantha addk Bon(from the early days) Meadow( you really got me through some dark times. Thanks to everyone.


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
Log in to post a reply

Dec 3, 2019 10:16PM Traveltext wrote:

Congratulations Val, you’ve achieved a real milestone, and are a role model for patients who’v had kitchen sink treatment. So glad that have the lovely distraction of grandkids to entertain and cherish. Kids do ground us.


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

Dec 4, 2019 05:18PM - edited Dec 4, 2019 05:51PM by Flo80

Hi Friends,

Just got my pathology report back and says 3.2 cm of residual Idc and DCIS in the breast. Apparently the margins are clear but have 9 nodes positive and macro metastasis in 6 of those lymph node. One lymph node has tumour in the fat outside the node.Don't know what it means seeing the oncologist and surgeon on 12 dece

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

Dec 5, 2019 07:02PM LoriCA wrote:

Congrats Val, that's fantastic! I'm glad that life is busy and happy for you, and glad you stopped by to check in.


MO is concerned that TDM-1 isn't working. Hoping I just have some kind of bug that I haven't been able to get over for a few weeks, because if it's not that, I either had the shortest response ever of about one month, or it's my usual frustrating pattern of chemo working in some places and not others. He wanted to stop treatment and scan immediately, but I asked if we could just continue until after the holidays because I really don't want the added stress just weeks before Christmas (my husband went to my consult to make sure I was completely honest about the symptoms I've had since my last infusion). He agreed to one more infusion to see how I do, as long as I promised to call with weekly updates until my next appointment on the 26th. In addition to increased tumor pain, I have several symptoms of cachexia so he's not playing around, not that there's anything that can be done about it if that's what it turns out to be instead of some kind of stubborn bug. I can't seem to catch a break.

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

Dec 5, 2019 08:11PM Flo80 wrote:

Dear Lori get well soon. Lots of hugs.

Flora

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

Dec 6, 2019 04:46PM LoriCA wrote:

Thank you Flora :) Let us know how your meetings go on the 12th.

Hope everyone has a fantastic weekend!

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

Dec 8, 2019 10:10AM shycat wrote:

Yesterday I finally received a criminal court jury summons after living here for over 22 years, and I found it a cause for celebration. In my adult life, I had only received two jury summons, both times, to my disappointment, shortly after moving out of that county/state. I've always believed that it was my civic duty to serve on a jury if called, same as voting. One of our family jokes in 2014 was that it would be just my luck to receive a jury summons while undergoing treatment for IBC, requiring me to get a medical waiver. Happily, there's nothing preventing me from serving if selected for jury duty. Another thing cancer couldn't take away from me!

Small victories, every day. :)

shy Dx 1/7/2014, IBC, Left, Stage IIIC, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 1/16/2014 AC + T (Taxol) Surgery 6/2/2014 Mastectomy: Left, Right Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Radiation Therapy 7/14/2014 Breast, Lymph nodes Hormonal Therapy 3/27/2015 Aromasin (exemestane)
Log in to post a reply

23 hours ago Valstim52 wrote:

Hello All

Wanted to give a big shout to Traveltext for always being here for all of us. YOu were such a pillar of support to me when first dx'd and through a lot of my troubles. We appreciate you.

Much love to LoriCa. I am hoping the infusions are working and you do catch that break.

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
Log in to post a reply

22 hours ago Traveltext wrote:

Thanks Val, truth is that there were pillars of support here for me when Google brought me to BCO nearly six years ago.

Right now, I’m in San Antonio for the breast cancer conference starting Monday. Here’s me at TheAlamo this morning.

Happy Holidays everyone.



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

19 hours ago Flo80 wrote:

Thank you Lori, Travelnext, shycat and valistm for the support. Travelnext have a great time at the conference

Regards

Flora

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

19 hours ago Flo80 wrote:

Thank you Lori. Have a great weekend.

Regards

Flora

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

6 hours ago sbelizabeth wrote:

Shycat, a long time ago, I was on a jury in California with Tom Selleck. He was more handsome in person than on TV.

Traveltext, enjoy Texas! And let us know what you learn, as I know you will.

Valstim, good to see you again! Enjoy those grands!

Flo, I had clear margins with my mastectomy but a lot of residual cancer in the skin of the breast. I'd had an axillary clearance done during the lumpectomy many months prior (long story) but there was loads of cancer in the nodes. My radiation oncologist told me the radiation would mop up any remaining cancer cells in my chest and underarm. I'm still here, 8 years later, so it must have worked.

Lori, you are in my thoughts and prayers frequently, my friend. I wish I lived closer so I could bring a cup of tea and give you a foot massage. Thanks for taking the time and energy to keep us updated. We are all sending friendship and healing thoughts your direction.

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

Page 60 of 60 (1,796 results)