TNBC Metastasis/Recurrence Users

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I B C

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Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=9110
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Topic: I B C

Posted By: Debris
Subject: I B C
Date Posted: Oct 02 2011 at 4:21am

It is now official, I have IBC in addition to the TNBC. According to Dr C., the new Dx is unrelated to the original cancer.

I've been pu onto FEC chemo protocol, with first infusion on last Friday. Saturday early morning, lips started swelling, in addition to the swelling already happening. Swallowing & breathing more difficult. Wasnadmitted overnight to Mercy Fitzgerald ICU, so that they could monitor more closely, but I'm being transferred to Fox Chase today, as of course they have all the results of last week's tests, and can better relate what is happening to either side effects or to cancer progression. So we are still in PA, and DH is kept busy changing flights, accommodations, next week's appointments, etc., etc., as well as running back and forth, for me. I Love that man!

I know there are a few Forum members who have had IBC happen after TNBC, and I hope we can all exchange experiences, etc., etc., of this iBC journey? I'd love to hear from you!

Take care.

God Bless.

(edited to fix typos!)

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Replies:

Posted By: 123Donna
Date Posted: Oct 02 2011 at 11:05am

Deborah,

I think I may have asked this in another thread, I apologize just trying to learn more about IBC. So the new cancer (IBC) isn't related to the TN you had? Is it a new type of cancer and not a recurrence? I know this is so scary for you and hope you can get some relief with the nodes and breathing issues. I applaud everyone going through IBC your willingness to educate others.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Barbi
Date Posted: Oct 02 2011 at 11:08am

Debris, Prayers that they will quickly get this under control.

-------------
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.

Posted By: dmwolf
Date Posted: Oct 02 2011 at 5:09pm

Hi, Deborah. I'm so sorry to hear about the IBC. What a crappy turn of events this is.

What makes them think it is a completely unrelated cancer? Personally, I would be inclined to think it probably evolved from the 'old' breast cancer, unless there was a huge qualitative change like a flipping of receptors from ER- to ER+. Isn't it in basically the same area, in the skin of the neck above where hey positive nodes were/are? On the positive side, I've heard in a vague way that there are new drugs coming available for IBC, possibly something with an immune modulating component. If I learn more, I'll let you know. Steve might be able to hook you up with a trial of this type.

love you,
d

-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: zacar
Date Posted: Oct 02 2011 at 5:19pm

Oh Deborah, I am so sorry girlfriend. I'm glad you are with Dr. C. He is the best. Unfortunately, he is so far away for me.

I hope you get some relief from the swelling quickly. I am on Abraxane and so far I don't know if it's working or not. The redness seems to be going away as well as open sores but my homeopath made me a spray and I know that has helped tremendously. After the next round I will have a PET/CT and I will know more. I also have a frontal lobe 4 mm tumor and a blood clot in my stomach. I plan on conferring with Dr. C. very soon. That's my story.

You are in the best hands. Please let us know how you are doing, etc. This IBC sucks. If you want to talk you can call me or email me. I will PM you. Hang in there.

Love,

Caryn

-------------
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC

Posted By: Debris
Date Posted: Oct 02 2011 at 7:35pm

Aargh. I had a lovely post all done, and and then lost it all.

I can't speak to the niceties of those distinctions, D. My original Dx was DCIS, no nodes involved, stage 0, ER+, PR+, HER2-. The "best cancer" to have if one is going to have BC, my surgeon said. Then the 2010 neck node biopsy showed TNBC - an apparent flipping.

All I can say that Dr. C was quite certain that it is a seperate cancer. He pointed out a couple of phrases in the original 2008 path report, that tended that way, but which may have been overlooked. (Which could also account for the aforesaid flipping) Although Dr C recognized abnormalities in the left breast skin, they are by no means predominant or highly noticeable. The core biopsies of breast skin and neck confirmed the diagnosis. He feels the FEC is the best starting point, and said it would work against the TNBC too. His feeling is, though, that right now the IBC is the most urgent issue to be taken care of. He too, is worried about further impact on the airway.

So far the meds they are giving me have not done anything for the swelling, so the consensus is that it is most likely not chemo allergic reaction. However, it could include some lymphedema along with the BC which, for face and neck, pose their own problems (can't wear a compression sleeve around neck, for e.g. It feels like I already have that!)

I hope when the folks are back on Monday, this particular episode is resolved, as I feel fine for the rest of 'me'.

I will keep posting anything new that crops up.

Take care, all.

Deborah.

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: TNinTN
Date Posted: Oct 02 2011 at 8:07pm

Just a quick word of encouragement. Susan and I went to Greek Fest last weekend and one of the ladies serving pastries recognized Susan from our many visits to the Cancer Support Community. She shared with us that she had recently been treated for IBC and she was doing quite well and felt good enough to contribute her considerable talents to the festivities. Prayers continue for all of you and hopefully you will be doing well and feeling great soon. Her homemade pastries were delicious, by the way. Susan even had a bite of Baklava - a rare departure from her no sugar regimen.

Martin

-------------
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11

Posted By: SagePatientAdvocates
Date Posted: Oct 03 2011 at 5:30am

Dear Deborah,

thank you for taking the time to keep us updated.

I have been thinking about you/your DH and the ordeal you have been going through.

I hope today will be a better day for you.

you both are in my prayers,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: Debris
Date Posted: Oct 03 2011 at 7:44am

Thanks for your encouragement, Steve. It is so nice, to now 'know' you! Hope your other interventions of last week worked out for all concerned.

Take care.

Deborah

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: Debris
Date Posted: Oct 03 2011 at 7:51am

Hello Martin. Thanks for that good story. Like TNBC, most of what one reads on I B C is scary, so it's good to hear the other side, too!

I'm currently on a 'nothing by mouth' routine until they can get the swallowing and breathing thing worked out. So I'm enjoying Susan's treats vicariously...

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: Debris
Date Posted: Oct 04 2011 at 7:42am

Steve often says to find the beauty in every day. I've realized that this episode with the significant swelling and subsequent hospital stay and medical intervention has provided an unforeseen benefit! The extra fluids, steroids, benedryl, etc., etc., have no doubt helped contain any immediate side effects of my first FEC infusion!

I saw Dr C yesterday, and he said he can already "see" an improvement in my neck. His feeling is that the reaction was the "cancer fighting back because we hit it hard". Today, I believe I can also feel a difference, in that I can actually move my head up and down a little more. It had become so bad that basically I could only look at the floor in front of me.

So, I'm encouraged by this. And I'm even more encouraged by the love, support and prayers of all of you. Thank you so much.

Deborah

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: LauraT
Date Posted: Oct 04 2011 at 7:51am

Deborah - Your spirit and faith encourage all of us! So glad to hear that Dr. C sees improvement and that your range of head motion is improved, even if just slightly. Will continue praying for you and for this treatment to work on both the IBC and TNBC. (and that the side effects from chemo will be non-existent!).

Much love,

Laura

-------------
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva

Posted By: 123Donna
Date Posted: Oct 04 2011 at 8:05am

Deborah,

So encouraged by the improvement! With all you're going through, you seem to find the beauty in each day and still offer support to all on these boards. You are such an inspiration Clap

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Debris
Date Posted: Jan 02 2012 at 2:57pm

Current update -

I am doing quite well with the chenmo now, now that my "slow" thyroid is being medicated, and I've stopped all the steroids (had to taper off slowly, and it wasn't fun!). But I've had this persistent "infection" showing on my lungs. No amount of antibiotics seemed to do anything to it.

So, last week I wasn't given chemo - had a lung needle biopsy instead. The biopsy went well, and the suspected diagnosis was confirmed - Invasive Aspergillosis. I've been prescribed the appropriate medication (which itself has all manner of side effects). It is a difficult fungal infection to clear, and I'm told it could take 6 months to a year to do it.

Chemo will resume once I'm on the medication - so hopefully I'll get chemo next week. (I'm sure it's my imagination working overtime, but I keep thinking the nodules on my neck are growing again...).

Nevertheless, with stopping the steriods and with the thyroid medication, I'm feeling stronger and more "with it" than I've been for some months now.

Wishing all a healthy, happy, new year, and for many years to come.

Deborah.

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: Shelly Rae
Date Posted: Jan 02 2012 at 5:45pm

Wishing you the best, with all you are giong through. You sound like you are hitting this cancer hard which is great! Keep up the fight. It is amazing what can handle in the fight to kill the cancer in our bodies. Keep up the good fight!

Shelly Rae

-------------
4/09 age 47 Stage 3a, Gr 3,1 node micro ACx4 Tx4 Rads x 33, done Dec.1,2009 NED

Posted By: vickid
Date Posted: Jan 07 2012 at 11:54am

Deb,

I'm probably a bit late to reply , but I was diagnosed with triple negative IBC in May of 2009-like a double whammy and none of my friends knew nothing about either.

I went through the mastectomy, 26 lymph nodes pulled ( 8 were bad) had A/C, taxol, radiation...all the "fun stuff" we experience. I had mets to the spine in Dec 2010 and have been on Xeloda since then, which is wonderful if one must be on chemo, as it's pill form and I take it at home. Mets were gone in 3 months. Some side effects but nothing like what the "Big Guns" do.

Triple Negative IBC is scary-big time scary. My sister knows a young woman who is a 6 year survivor of this combination, but cancer can't read and I know God has a plan for me..I wish I'd get a few hints there! Good doctors and common sense-and be kind to yourself. I have always told myself that, at times, I don't get what I deserve, I just get what I get..and it's ok....not great...but ok.

Vicki

Posted By: christina1961
Date Posted: Jan 07 2012 at 12:29pm

Deb,

Sending you love and support!

Christina

-------------
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.

Posted By: SagePatientAdvocates
Date Posted: Jan 07 2012 at 10:37pm

Dear Deborah,

my prayers, for you and your DH, continue unabated and always will...

again, wishing you both a better New Year than last...

I admire, both of you, more than words can say.

warmly,

Steve

Posted By: zacar
Date Posted: Jan 08 2012 at 1:33am

hi all,

i am on hospice right now after radiation poisoning. its amazing what that can do to you. i woke up so disabled. can't remember much but has been very lucid the last few days. the brain is so complicated. hope it stays this way for awhile.

hi steve.

hugs,

Caryn

Posted By: SagePatientAdvocates
Date Posted: Jan 08 2012 at 8:25am

Just saw this, Caryn...very sorry you are going through this.

I will call you later today. It’s 5:23 am for you...will call you around 11 your time...I am in Pennsylvania at my daughter’s but will be back in L.A. on Tuesday evening.

you have been, are and shall be in my prayers,

Steve

Posted By: Genie
Date Posted: Jan 08 2012 at 8:50am

Oh Caryn, I'm so sorry to hear this latest news! You are in my thoughts and prayers during this difficult time.

Love & hugs from Texas,
Genie

-------------
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC

Posted By: Barbi
Date Posted: Jan 08 2012 at 10:05am

Caryn, You know how much we all hate to hear of this. I will, however, pray for you to have peace and lots of loving time with your son.

-------------
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.

Posted By: zacar
Date Posted: Jan 08 2012 at 10:15am

hi steve,

looking forward to hearing from you. must be cold for you. glad you're coming back. been like summer here. maybe you'll have time for a little visit? Would love to see you.

Posted By: 123Donna
Date Posted: Jan 08 2012 at 11:42am

Caryn,

I'm so sorry, I just can't put into words how sad I am for all you're going through. Stay strong, we love you. I pray that hospice gives you the quality of life and comfort you need right now. Give your son a big hug. I still remember the beautiful story of the Giving Tree. Such love. I wish we'd live closer as I'd be visiting right now.

Love,

Donna

Posted By: LRM216
Date Posted: Jan 08 2012 at 12:32pm

Caryn:

I have been enmeshed in my own problems of late, and although I constantly read the posts, I just came across yours today and want to send you much love and strength and to tell you how sorry I am about the radiation poisoning. You are one of the strongest women I know and such an inspiration to all of us on this board. I can only pray that hospice care will do much for you, in every way positive. Please know you are in my prayers and thoughts.

Love and gentle hugs to you,

Linda

-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33

Posted By: SagePatientAdvocates
Date Posted: Jan 08 2012 at 1:02pm

Hi Caryn,

will plan on visiting Wednesday..

hugs,

Steve

Posted By: Debris
Date Posted: Jan 08 2012 at 11:17pm

Caryn, so sorry to see your post. But I agree with the other posts - you are so strong, and such an inspiration! Hope that you rebound from this, stronger and healthier.

Thank you to all the well-wishers. I am grateful for your attention and prayers.

I get my postponed chemo tomorrow, and hopefully it kicks the cancer back down again. (It is not my imagination - my DH also believes the nodules are growing again. Those that were there are bigger, and there are quite a few new ones!)

And so we start the new year with new issues to contend with - as if we didn't have enough already!

I wish everyone a better year in 2012 than experienced last year.

Take care, all.

Deborah.

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: LRM216
Date Posted: Jan 09 2012 at 9:34am

Sending love and all good wishes to you too, Deborah. Seems many of us are starting the new year off a little bumpy. I pray for all of us that all are just bumps in the road, and we each will be back on the straight and narrow road real soon.

Linda

Posted By: mudpuppy
Date Posted: Jan 09 2012 at 3:11pm

Caryn,

You and your son are always in my thoughts and prayers. I am sorry to hear what you are going through. Stay strong and give that boy of yours a big hug and him back to you!!

Christine

-------------
DX 9/21/2009, age 37, Tumor 3 cm (4.3 with tentacles), Grade 3, DD Neoadj chemo,4X AC, 12X Taxotere,Stage 2A, BRCA 1/2 neg, Bilat mast/reconst 5/18/10, 0/10 nodes, Gemzar & Cisplatin 4 cycles

Posted By: Grateful for today
Date Posted: Jan 10 2012 at 8:13pm

Caryn,

Lots of caring thoughts and love to you today.

Grateful for today..............Judy

--------

Steve,
When you visit Caryn, please bring her my loving and caring thoughts.
There are also some messages for Caryn on Zacar. Thanks, Steve,
Judy

Posted By: zacar
Date Posted: Jan 12 2012 at 10:16am

Hi Everyone;

i had triple negative bc and after 4 years it morphed into IBC. i have these horrible red lesions/patches on my chest, breasts and underarm. They are hard and bumpy. i have never seen this before. The only thing i can compare it to is a very bad case of psorisis.

i went to a dermotologist who got creative yesterday and injected a few with 5fu mixed with a tiny bit of cortisone. We should know in the next 2 week if it works and he will continue do more. it hurt really badly to take those shots but now i will be prepared. The spots are spreading like crazy and so painful. Beteen the headaches - the cancer is still in my brain after having radiation twice so that's out.

Anyone have these awful things and if so what are you doing for it?

Thank you in advance for any replies.

xo

Posted By: CindyKS
Date Posted: Jan 12 2012 at 8:04pm

Caryn,

So sorry to hear of your pain and please know that I am thinking of you. I have nothing to compare to your struggles, but I do have psoriasis. I slather on the cream (cetaphil) (lotion is not enough) (or sometimes Aquaphor) at least twice a day and never wear anything rough--soft cotton is good.

You are in my prayers

Cindy

-------------
Age 42; Dx 4/10; IDC; 2.1cm; lumpectomy; ACx4-taxolx4 every 2 wks; Radx37, BRCA 1/2 neg

Posted By: SagePatientAdvocates
Date Posted: Jan 13 2012 at 12:12am

Dear Caryn,

I have been trying hard to come up with the right words about seeing you last night...I don’t feel that I am able to so I will try to give you just a couple of random thoughts-

it was lovely to see you again and I greatly appreciated your warm hello hug.

it was a pleasure to laugh with you, at times.

I can’t find the words to express how much your courage impresses me and how saddened I am that you are going through such an ordeal.

I know it is a challenge to do most of the day...but please try to find the beauty in each day.

you have been, are and shall be in my prayers,

Steve

Posted By: Debris
Date Posted: Jan 28 2012 at 8:10pm

Caryn, how are you? I often think of you, and include you specifically in my prayers. Let us know how you are doing?

Deborah.

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: Grateful for today
Date Posted: Jan 29 2012 at 12:11am

Deborah,

There have been some posts after Jan 13 on thread Zacar (Caryn)
including one by Caryn on Jan 16 ( on Jan 16, Caryn was off hospice).
%20http://forum.tnbcfoundation.org/zacar-caryn_topic8810_page5.html - http://forum.tnbcfoundation.org/zacar-caryn_topic8810_page5.html

With good wishes to you for good days and being able to do the things you would like to do.

With caring thoughts,
Grateful for today................Judy

--------------------

Caryn,

Sending you many good wishes for good days and being able to do the things you would like to do.

With caring thoughts.

Grateful for today..........Judy

edited for spelling

Posted By: Grateful for today
Date Posted: Feb 27 2012 at 9:46pm

Quote from other forum topic. Reply Posted: Feb 19 2012 at 10:39am by Donna
I am so sad. I just looked at Caryn's FB page and found out that she passed away. A friend posted this: Our angel left us this morning. Her spirit went up with the sunrise I will never in my life look at the sunrise without remembering our angel. Team Caryn was absolutely amazing!! Thank you for all of your love and constant support We could not have made it through this difficult journey without each and every one of you Our angel is off on her next journey We will miss you and always remember you My promise to her was to always take care of the most important everything in her life..Zack And I will!!! He is so amazing !! Zack is her legacy. No one could be more proud of Zack in the universe then Caryn We love him and we will watch over him forever!! I miss you so much!! I'll see you in my dreams xoxoxxxxxxxxxxxxxxxxx

Tributes for Caryn are at: http://forum.tnbcfoundation.org/remembering-caryn-cole-zacar_topic9648.html - http://forum.tnbcfoundation.org/remembering-caryn-cole-zacar_topic9648.html

Caryn, May you rest in peace.

Grateful for today.......Judy

Posted By: Grateful for today
Date Posted: Feb 27 2012 at 9:48pm

Deborah and vickid,

Sending lots of caring thoughts to both of you.

Grateful for today...........Judy

----------------------------------------------------------------------------------

Hi Newbies,
      If you are reading this, remember IBC is rare.
      Because it is rare, IBC info is important to be aware of........and hopefully never needed.
                                  Judy


Hi All,

On another thread, some one is awaiting a rule out IBC (Inflammatory Breast Cancer).
I thought I would look at the pictures of IBC on the post on TNBC News, Resources and Tips:
http://forum.tnbcfoundation.org/inflammatory-breast-cancer_topic8337.html - http://forum.tnbcfoundation.org/inflammatory-breast-cancer_topic8337.html
.............just to refresh my memory for vigilance sake.
Found on the MD Anderson link.....an article which had a link to a short video made for
educational purposes for IBC.
On that short video, Dr. M. Cristofanelli speaks.....just a short time.   Since I had not heard
him speak before, thought others who have heard his name but not heard him speak might
be interested to hear him.
   specific link to video: http://vimeo.com/15550223 - http://vimeo.com/15550223

With caring and hopeful thoughts to all,

Grateful for today.........Judy

Posted By: SagePatientAdvocates
Date Posted: Feb 27 2012 at 10:07pm

Also, it is important to note that not all IBC looks like the pictures on the other thread.

The best way to determine if you have IBC, in my unprofessional opinion, is to see a Breast Medical Oncologist (BMO) who is truly an expert in diagnosing IBC. That involves a clinical exam by the BMO, a skin punch biopsy and often various scans and other diagnostic tests.

I believe that many oncologists in this country have never correctly diagnosed a case of IBC. They may have seen them but did not correctly diagnose them. Therefore, it is very important that you get the ‘eyes’ of someone like Dr. Cristofanilli at Fox-Chase or Dr. Ueno at MD Anderson Cancer Center who have seen hundreds of IBC cases and diagnosed them correctly. And there are other IBC experts in the U.S. and in other countries.

The upsetting thing to me is the number of BMOs who simply ‘get it wrong’. I helped four women last year with IBC and three were incorrectly diagnosed with “skin mets” and one was told that “If I didn’t know you had TNBC I would think you had IBC. You can’t have both at the same time” Such an incredibly incorrect statement because from what I have been told 30-50% of all IBC is also TNBC. The converse is not true. Most women with TNBC do not have IBC.

Again, I do not want to scare anyone with this topic and neither does Deborah who posted on another thread the other day. We talked about that when we saw each other recently. We are both posting out of an abundance of caution. Better safe than sorry. The vast majority of cases that you may wish to have examined further will not be IBC. But a few will and for those few it is important to know who the enemy is, as precisely as possible, and ideally, as early as possible.

warmly,

Steve

Posted By: Debris
Date Posted: Feb 27 2012 at 10:16pm

Steve just posted the gist of what I was going to say. I'll just add that in my case, the IBC manifested itself on my neck first, before it appeared on the breast. The fact that almost all photos and information show or mention only the breast, is why I believed I only had skin mets. It was only through reading Steve's postings about IBC, and his help in getting to see Dr. C., that I received my Dx relatively quickly after the I B C started to run rampant.

So, don't be scared - but be sure to get the correct identification of what your particular situation encompasses.

Judy, thank you for your kind words, and for all the help you give to us in your links and postings of information.

Best wishes,

Deborah

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4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: SagePatientAdvocates
Date Posted: Feb 27 2012 at 11:03pm

Some years ago, I lectured my teenage son about how he was driving and I spent about 45 minutes doing it. Finally I said to him..”let me ask you this...what would you say to your son if you were his dad.” His response...”the exact same thing, Dad but in a lot fewer words.” At that I roared with laughter and so did he.

So, thank you Deborah for saying in better/fewer words than I, the gist of what, I wanted to say.

As all of you poor readers know I desperately need an editor. Sorry about that. I just want to be thorough and I know sometimes I belabor the points. Again, sorry.

Thanks, Deborah and I am sending you a gentle hug. Best to your DH.

warmly,

Steve

Posted By: LRM216
Date Posted: Feb 28 2012 at 8:30am

Steve:

Every word you type is valued by us! Keep them coming - you need no editor.

Hugs,

Linda

Posted By: Genie
Date Posted: Feb 28 2012 at 9:13am

Ditto what Linda just posted!

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DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC

Posted By: Debris
Date Posted: Apr 08 2012 at 4:41am

Are there any other folks on this Forum who have been Dx with IBC? Would love to exchange information, treatment regime info, etc.

If you would prefer not to publicize that Dx, please feel free to PM me, we can stil be in touch that way.

Hope to hear from someone, though I don't wish for anyone to have that diagnosis.

Deborah.

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4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: Grateful for today
Date Posted: Apr 16 2012 at 9:02pm

Hi,

Was trying to find an article on risk TNBC factors by T. Buchholz and Hortobagyi and in the process
found an article(abstract) by them and Dr. Cristofanelli on IBC.
Although it was published in 2012, the study is from 2004-2007..........so there is probably more
updated info that has not made publication yet. So, do ask your MD for updated info.
link: http://www.ncbi.nlm.nih.gov/pubmed/21765048 - http://www.ncbi.nlm.nih.gov/pubmed/21765048
Identifying factors that impact survival among women with inflammatory breast cancer.
Dawood S, Ueno NT, Valero V, Woodward WA, Buchholz TA, Hortobagyi GN, Gonzalez-Angulo AM, Cristofanilli M.
Source
Department of Breast Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, USA.
Ann Oncol 2012 Apr;23(4):870-5. Epub 2011 Jul 15.
(Have put this article on thread "Open Access")

With caring thoughts,

Grateful for today............Judy

Posted By: SagePatientAdvocates
Date Posted: Apr 16 2012 at 9:30pm

Dear Judy,

Thank you for posting this article.

There is normally a lag time between the time a study was done and the results presented, often many years as in this case.

And I am afraid it is on us to do a lot of research on IBC. Most oncologists, from my experience are not up-to-date on the latest IBC studies because it is so rare. Also, as various mutations are analyzed more and more 'cutting edge' research is being done 'live' with IBC, again with any study results perhaps many years away.

thank you, again..

You, Lee and Donna are doing a fabulous job helping us all stay current. We are blessed to have all of you working so hard on our behalf.

warmly,

Steve