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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 06:23PM

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 13, 2017 10:35PM jessozzie wrote:

Hello friends, how are you Kicks, Meadow, TT,? i know its been long time since my post, but i am over the moon. I had a follow up to my IBC,( i was DX in 2013 stage III B,) i had scans last week ,my Dr told me not to bother coming back, according to all the specialists that have seen me, they claim i am CURED...So here is hope to all IBC folk out there, it is curable! never give up hope..


Love..Jess

Dx 8/10/2013, IBC, Right, 5cm, Stage IIIB, Grade 3, 0/19 nodes, ER-/PR-, HER2+ Chemotherapy 8/11/2013 Doxil (liposomal doxorubicin), Taxotere (docetaxel) Surgery 2/9/2014 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Radiation Therapy 3/15/2014 Breast, Lymph nodes
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Nov 14, 2017 04:33AM traveltext wrote:


Great to hear your good news Jessozzie. I'd say stay on the lookout for a recurrence regardless of what your doctor says about coming back and take the "cure" prognosis to mean NED. Are you on hormone blockers?


NED breast and prostate cancer. 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 14, 2017 03:07PM jessozzie wrote:

Hi TT, given my age( i am over 80), and no progression since i had my chemo over 4 years ago and i had clear PCR the best thay had seen in IBC, clear margins,and no nodes involved, they felt thats a good recipe for it to unlikely return, ofcourse they said to keep an eye out in the future for changes to mastectomy scar and to come back yearly for scans just for peace of mind.i am not on hormone blockers, i did have 18 rounds of Herceptin back in 2013 when DX, what they hinted, given my age, that something else will get me before this does...


Dx 8/10/2013, IBC, Right, 5cm, Stage IIIB, Grade 3, 0/19 nodes, ER-/PR-, HER2+ Chemotherapy 8/11/2013 Doxil (liposomal doxorubicin), Taxotere (docetaxel) Surgery 2/9/2014 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Radiation Therapy 3/15/2014 Breast, Lymph nodes
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Nov 14, 2017 04:49PM sbelizabeth wrote:

Jessozzie, huge congratulations! You have scans every year? Do you mean MRI, CT, or PET/CT?

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 15, 2017 08:48PM kicks wrote:

HI Jessozzie - think about you so often. Such fantastic news from you!

Me - I have no 'complaints' of any consequence to be concerned about (other than just getting older - 71 now Winking). Still NED 8 yrs after DX.

When I 'hit' a yr post DX, all my Drs told me that they never expected to make it to a year - FOOLED THEM!

Don't stay away for so long - miss you!

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Nov 16, 2017 02:28AM jessozzie wrote:

Hi sbelizabeth,in your question to scans, i have ultra/CT in chest area and bloods,they simple said its my choice if i wish to have them yearly,because of my clear margins after mastectomy,they really felt it is unlikely to return, the head oncologist in IBC said after 4 years of NED the odds are slim to return, it normally progresses after the first 2 years IF it does progress,..

I recall the the morning when i woke to this orange peel, warm hard breast, inverted nipple. i had no idea what to think, i called my family doctor and explained it, thank god he knew of IBC, as many doctors suspect mastitis and bites,and time is vital with this, many IBC people get misdiagnosed and then its stage 4...He booked me to see the oncologist that very evening,i was in a chemo chair that night..he told me are you ready to fight this fight. They told me what would happen, i was given taxotere, herceptin, and the next week Doxorubicin he had the mixture of chemo for best results. and after all the chemo 6 months,i had the mastectomy,

My Onco is my hero,i was so fortunate that he knew IBC as many Doctors dont..

As Kicks said she has been NED for many years, my oncologist would tell her to party,I know all the world has good IBC doctors, i like to claim here in my Town we have one the worlds best Drs in IBC.. We all know nothing is certain, but giving us hope is all we have to go with. Oh Kicks and all you lovely people, how i wish we all could be together in person, i think we could paint the town very red. .ha ha

Dx 8/10/2013, IBC, Right, 5cm, Stage IIIB, Grade 3, 0/19 nodes, ER-/PR-, HER2+ Chemotherapy 8/11/2013 Doxil (liposomal doxorubicin), Taxotere (docetaxel) Surgery 2/9/2014 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Radiation Therapy 3/15/2014 Breast, Lymph nodes
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Nov 16, 2017 04:51AM traveltext wrote:


Thanks for sharing your diagnosis story Jessozzie. It took me three months to convince my GP to send me for an ultrasound, although the IBC symptoms only appeared at the end of this time. The breast surgeon took one look at my chest and sent me to the onc to get chemo started. Like you, I was told after treatment that IBC progression generally happens in the first couple of years after which the chances diminish with time. Like you, I don't assume anything will or won't happen, rather that the comprehensive treatment I received might just serve me well. Certainly, Kicks serves as a mentor here!


NED breast and prostate cancer. 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 18, 2017 08:31PM kicks wrote:

Jessozzie -

If I could get 'down under' (where I love to go and Hubby was able get to Perth a few times when USN before he retired) we would definately 'paint the town RED!

It was my PA of 20+ yrs who immediately got me in for new mammo that afternoon which turned into an US and biopsies that afternoon . I only had an enlarged node but she wanted to be sure. At 8 the next morning I got the call from Radiologist with the path. report - IBC.

For me, my TX plan was very different than most other IBCers. I did neoadjuvant and adjuvant chemo. The idea (from both Chemo Dr and Surgeon) was to do neoadjuvant Chemo (4DD A/C) to try to get 'it' to form a 'lump' with margins and shrink so 'it' could be gotten out surgically 2 weeks after last A.C. It did what was hoped for. A CPR was never the idea - just to get 'it' where Surgeon had a 'chance' of getting 'it' out. Then 3 weeks post UMX did adjuvant chemo (12 weekly Taxol) to 'mop up' any missed. Makes sense to me - get where surgery can get 'it' out and then 'clean up' if it is needed to be sure. Made a lot of sense to me - get 'it' to where surgery has a chance of getting 'it' out and then a follow up. Then rads another back up.

As Travel text said - I don't assume that anything will or won't every happen. There are no guarantees with anything in life so live every moment to the utmost we, individually, can.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Nov 19, 2017 01:36PM bride wrote:

Hi all,

I've gotten a chance to come back. Sbelizabeth, Kicks, Meadow, Jessozzie, Travel Text (you're a hunk in my book) and everyone else, I've missed you. I realized I went through my treatment relying on understanding everything intellectually. So, between the seqeulae of my treatment and my emotions finally kicking in, I was a wreck. Then my DP, Deborah, was in hospital for 6 months of 2016; appeared to be okay but then had a stroke this last Easter which profoundly altered her personality. It didn't help that 2 days after her stroke we had a windstorm that blew a tree 300 yards onto and through our roof and into two interior rooms. And, of course we had lead paint — yes We had had it abated but abatement doesn't include punching holes through ceilings. We're still having work done. Deborah's had to stay with her sister because she's now on O2 but I stayed to supervise and to feed our herd of semi-feral cats.

So here I be. It has been lonely without all of you. I did write another paper (not finished) on hair loss and conceptualizations of the feminine and the meaning of the word “woman ."

I'm glad everyone is mostly okay and to those who are new here, IBC can be beat: I'm starting my third year of being cancer free.

I promise I'll be around more.

Love,

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 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. 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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