just posted Inflammatory Breast Cancer |
Post Reply 
|
Page 12> |
| Author | |
SagePatientAdvocates 
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4748 |
 Post Options
 Thanks(0)
 Quote Reply
 Topic: just posted Inflammatory Breast CancerPosted: Apr 15 2011 at 4:04am |
|
in Resources sectiion...so we have readily available info for women and/or their loved ones who come on this site..
all the best, Steve
Edited by steve - Apr 15 2011 at 2:52pm |
|
|
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
|
|
 |
|
|
EileenF
Senior Member 
Joined: Jan 20 2010 Location: New York Status: Offline Points: 197 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 15 2011 at 2:49pm |
|
thank you Steve, you insight, information and contacts are invaluable to all of us here!
I will be speaking with Valerie later today as well. Please know you have made an enormous difference in my outlook today giving me the ability to contact informed people, it is truly appreciated.
|
|
|
7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
|
|
|
|
|
EileenF
Senior Member
Joined: Jan 20 2010 Location: New York Status: Offline Points: 197 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 22 2011 at 5:18pm |
|
At least two of us here have been diagnosed as having Inflammatory breast cancer along with TNBC in the past two weeks by specialists at MD Anderson and Dr. Cristofanilli of the FOX Chase cancer center despite both being told by our oncology teams we could not possibly have IBC if you have even a slight question or concern please contact Steve or Valerie Fraiser for help in getting a IBC Specialist to review your situation
|
|
|
7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 22 2011 at 5:53pm |
|
Eileen,
Both you and Caryn have educated us all to be on guard for suspicious skin conditions. It's important that we don't dismiss the symptoms and seek the answers we need. Do they think yours might have been IBC from the original dx? 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 |
|
|
|
|
EileenF
Senior Member
Joined: Jan 20 2010 Location: New York Status: Offline Points: 197 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 22 2011 at 6:09pm |
|
Donna, yes based upon a review of all my biopsies and test results the IBC Specialists believe there were legitimate signs that the cancer was both IBC and TNBC in 2009 and follow up should have been done to verify the IBC as cancer cells showed in the skin then I wasn't aware of this then, so disappointing. Also we believe in Sept 2010 the redness they say was radiation recall is IBC especially as it responded to chemo in terms of aggressive growth during that time
|
|
|
7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 22 2011 at 6:37pm |
|
Dear Eileen,
what is absolutely amazing to me are the posts that you, Donna, Caryn and countless others make on the TNBC Foundationboard in an effort to educate our TNBC family. All of these posts are done while fighting cancer and/or withstanding chemo or radiation therapy and/or dealing with the stress of various scans/MRIs etc. About four years ago I met an extraordinary woman named CarynRose at CTCA. We had never met prior to this but when I walked in and saw her typing on her laptop I knew it was her. She was just finishing a post on another message board and she kept all of us informed on a regular basis for several years. She, unfortunately, lost the battle several months ago but I still marvel at what she did. She was the one who introduced me to this board and I will never forget when her husband told me (as he drove me to the train station near their home)..”The support Caryn has received from the TNBC Foundation has been truly remarkable.” I am glad she introduced me to this loving, supportive, wise family. Your efforts to educate women regarding IBC are truly, truly commendable. The fact that you are doing this while dealing with your active disease is simply remarkable, to me. Perhaps, without knowing it, your actions have made you a very special advocate. Your willingness to help others and have them avoid some of your journey is very important. I know some of the words you have written about past mis-diagnoses must be painful to write, but, again, they serve as an education to all of us. Thank you for sharing. I want to thank you for your kind words on the various posts but the true thanks go to TNBC Foundation and the marvelous women and men who are our family. wishing you a lovely holiday weekend with your loved ones... in your corner, always, Steve p.s. Eileen, I am not asking you to take up the herculean task of posting on a regular basis...Of course, you are welcome to, but I just wanted to know how marvelous it is that you posted on this thread in an effort to help others...
Edited by steve - Apr 22 2011 at 7:01pm |
|
|
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
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: May 11 2011 at 11:18pm |
|
LBBC's latest newsletter has an article about IBC on Page 4:
http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and-Publication-Archive/National-Newsletter/Insight-Spring-2011 |
|
|
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 |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: May 11 2011 at 11:29pm |
|
Thanks Donna.
I think it is a very good article.. hugs, 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
|
|
|
|
|
lms
Newbie 
Joined: May 25 2011 Status: Offline Points: 3 |
Post Options
Thanks(0)
Quote Reply
Posted: May 25 2011 at 3:48pm |
|
Where exactly is the post? I cant see it.
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: May 25 2011 at 4:17pm |
|
Hi lms,
welcome to our family and sorry you have need to be here. I posted this in the resources section so that it is there permanently and easy to find. Be forewarned there are pictures within this link that can be upsetting to look at. Inflammatory Breast Cancer (IBC) is a very rare cancer that is frequently mis-diagnosed. I am a patient advocate and recently have been helping two women with IBC. In both cases their primary oncologist told them that they didn’t have IBC. All too often oncologists also think that if you have TNBC you can’t also have IBC. That is simply not true. In fact, I was told by an IBC expert that when women IBC it is often characterized as TNBC. The converse is definitely not true...most women with TNBC do not have IBC. If you suspect you or a loved one has IBC it is extremely important that you seek an opinion from an IBC expert. I hope you are just asking out of curiosity. all the best, Steve Edited by steve - May 25 2011 at 5:42pm |
|
|
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
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 12 2011 at 8:15pm |
|
bump
|
|
|
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 |
|
|
|
|
Debris
Senior Member
Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 30 2011 at 5:51am |
|
Just wanted to add that all the literature that I found (and the pictures) show, rightly, the impact of IBC on the breast and chest. However, I never presented this way. It only manifested itself on my neck, and so it was doubly difficult to understand that this was IBC.
I don't know how unusual it is to not have obvious breast involvement, but it misled me into believing it was not IBC as there was nothing (that I found) that talked, or showed, anything else but breast/chest as first line evidence. Thank goodness Steve urged me (and helped me) to get an appointment with a leading IBC specialist just this week. I feel, though, that women should be "warned" that IBC can show up first, in places other than the breast, so that time is not wasted with misdiagnosis and lack of understanding. Deborah. Edited by Debris - Oct 04 2011 at 8:35am |
|
|
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 |
|
|
|
|
EileenF
Senior Member
Joined: Jan 20 2010 Location: New York Status: Offline Points: 197 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 30 2011 at 11:42am |
|
You make an excellent point. I believe it is so important that we are all viligent and question everyone
|
|
|
7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
|
|
|
|
|
Momof2NJ
Senior Member
Joined: Aug 11 2010 Location: Northern NJ Status: Offline Points: 113 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 03 2011 at 2:36pm |
|
I miss CarynRose with all my body, heart and soul. :(
|
|
|
2008 BRCA 1+ dx stg 1,gr 3 IDC triple neg. BM w/ recon. CT x 4. Prophy TAH 2007. Recurrence 9/13/10. 10/5/10 tumor excised. ACx4, Taxol x3, abraxane x 9. 38 rads. 7/11 NED!!!
|
|
|
|
|
Debris
Senior Member
Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 04 2011 at 8:40am |
|
((((Momof2NJ)))). Hugs for comfort coming your way.
|
|
|
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 |
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Nov 15 2011 at 7:53am |
Signaling Pathway Linked To Inflammatory Breast Cancer May Drive Disease MetastasisAmplification of anaplastic lymphomakinase, which has been reported in other cancers such as non-small celllung cancers, may be a primary driver of the rapid metastasis that patients with inflammatory breast cancerexperience. If validated, the use of anaplastic lymphoma kinase (ALK) inhibitors may be a new treatment approach for patients with this lethal form of breast cancer. These data were presented at the AACR-NCI-EORTC International Conference: Molecular Targets and Cancer Therapeutics, being held Nov. 12-16, 2011. "A diagnosis of inflammatory breast cancer carries with it a very low five-year survival rate of about 40 percent, clearly indicating the critical need for an understanding of the molecular basis of the disease," said Fredika M. Robertson, Ph.D., professor in the department of experimental therapeutics at The University of Texas M.D. Anderson Cancer Center and a member of the Morgan Welch Inflammatory Breast Cancer Research Program. "However, there are few molecules that have been identified that are matched with available targeted therapies of clinical benefit in patients with inflammatory breast cancer." Robertson and colleagues used patient-derived tumors, tumor cell lines and animal models to evaluate protein-signaling pathways and genetic abnormalities with the goal of identifying molecules that may be associated with the increased metastases of inflammatory breast cancer. They discovered ALK amplification in 13 of 15 tumor samples taken from patients with this lethal variant of breast cancer. They then validated the presence of this abnormality in tumor cell lines and newly developed xenograft models. Gene amplification of ALK is only found in about 2 percent of the overall breast cancer population, according to Robertson. However, results from this analysis indicate that in inflammatory breast cancer, it could be occurring in up to 86 percent of patients. "The observation that ALK is amplified may be comparable to the observation of HER2 oncogene amplification in some cases of breast cancer, which revolutionized how the disease was treated," Robertson said. "Our observation that ALK is amplified in inflammatory breast cancer suggests that ALK may serve as a good target for treatment." To test this, the researchers evaluated the effects of a drug that inhibits ALK using tumor cells isolated from patients with metastatic inflammatory breast cancer and in two animal models that recapitulate the disease. Results indicated that the use of this drug resulted in tumor cell death. "Patients with inflammatory breast cancer are now being evaluated for ALK genetic abnormalities, and if found and eligible, may be enrolled in a phase 1, dose-escalation clinical trial of a small-molecule ALK/cMet inhibitor," Robertson said. She added that Massimo Cristofanilli, M.D., chair of medical oncology at Fox Chase Cancer Center in Philadelphia has implemented this trial at the center's Inflammatory Breast Cancer Clinic. Moving forward, Robertson emphasized the importance of collaborating with a research team with expertise in using both proteomic and genomic approaches to define molecular biology of tumors, to identify therapeutic targets and, once validated, to rapidly translate these findings to the clinic. "Our results demonstrate that, had we only been using genomic platforms, the likelihood of identifying ALK as a therapeutic target would have been significantly diminished," she said. |
|
|
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 |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Nov 15 2011 at 8:12am |
|
Thanks Donna,
Hopefully this finding will help some folks with IBC. Dr. Cristofanilli has been working on this for quite some time.. all the best, 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
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 10 2012 at 8:51am |
|
A report by Massimo Cristofanilli, M.D., F.A.C.P., chairman of Fox Chase's department of medical oncology and senior investigator for the research, which was presented at the AACR Annual Meeting 2012. New Cell And Animal Model Of Inflammatory Breast Cancer Developed By ResearchersInflammatory breast cancer (IBC) is a very aggressive, often misunderstood type of cancer that is diagnosed more frequently in younger women compared with other types of breast cancer. The five-year survival rate is between 25 and 50 percent - significantly lower than the survival rate for other types of breast cancer. The reason for the poor prognosis is that IBC usually grows rapidly and often spreads quickly to other parts of the body, including the brain, bone and lymph nodes. In an effort to better understand the biology of IBC, researchers at Fox Chase Cancer Center have developed a new cell and animal model that holds promise for providing a detailed understanding of the molecular mechanisms underlying the disease and for developing effective interventions. "In order for us to improve the treatment of these patients, we need to understand the biology of the disease - why these cells are so aggressive, invade very early on, and are resistant to standard treatments - and this starts with having good laboratory and preclinical models," says Massimo Cristofanilli, M.D., F.A.C.P., chairman of Fox Chase's department of medical oncology and senior investigator for the research, which was presented at the AACR Annual Meeting 2012. The researchers developed a unique model that recapitulates the aggressive metastasis and cancer stem cell activity associated with poor outcomes in patients with IBC. Understanding of the molecular basis of IBC may help increase the research community's knowledge of the metastatic process of other types of breast cancers. "Because there are only a few models of inflammatory breast cancer, it's important to develop more models of this disease, and ours represents an ideal model to evaluate stem cell-targeting therapies," says Sandra Fernandez, Ph.D., assistant research professor at Fox Chase and lead author on the study. To develop the new disease model, Fernandez, Cristofanilli and their colleagues developed an IRB-approved prospective protocol allowing for the collection of tissue and pleural fluid from patients with advanced IBC. The new cell line, known as FC-IBC02, was established from the pleural fluid collected from a 49-year-old patient whose cells lacked the protein HER2/neu, as well as receptors for the female hormones estrogen and progesterone. About 15 percent of breast cancer patients share these features and, as a result, they do not respond to hormonal therapies and certain medications that target these proteins. "Currently, the only option to treat these patients is chemotherapy," Fernandez says. "So it's important to have a specific model that we can use to test different drugs and see which ones work for this kind of disease." Moreover, the researchers grew culture tumor cells derived from the patient's fluid and found that they contained a large amount of the protein tetraspanin CD151, which controls tumor cell migration and invasion. In addition, these cells formed multicellular spheroids that displayed markers of cancer stem cells, including the marker CD44. When injected into the mammary fat pad of mice, the tumor spheroids rapidly developed into tumors and spread to the lungs. Furthermore, using the latest CytoScan HD arrays, the FCCC researchers found that these cells have multiple losses and gains across almost the whole genome, a phenomenon known as chromothripsis. In particular, FC-IBC02 cells have an amplification on chromosome 8q where the oncogene MYC is located and a deletion on chromosome 7p where tumor suppressor gene p53 is embedded. These analysis will identify novel molecular targets to fight the disease. By culturing cells from a large pool of patients, they will look for promising targets that are commonly associated with IBC as well as test new stem cell-targeting drugs that could reduce metastasis. "I think it's a major step forward for us as clinicians and scientists to develop better therapies and new diagnostic tools for patients with inflammatory breast cancer," Cristofanilli says. "We would like to translate our discoveries from bench to bedside very quickly, as these patients really need new treatments. |
|
|
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 |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 10 2012 at 9:12am |
|
Thank you for posting this Donna.
To all- Please look at the info in the Resources section on Inflammatory Breast Cancer. It is often mis-diagnosed as "skin mets" and it is important if you suspect that you may have IBC that you see an expert like Dr. Cristofanilli or the physicians at MD Anderson Cancer Center Inflammatory Breast Cancer Center so that IBC can be ruled out or confirmed. warmly, 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
|
|
|
|
|
DianeEE
Senior Member
Joined: Nov 29 2010 Location: Richland, MI Status: Offline Points: 105 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 10 2012 at 7:27pm |
|
Thanks for posting, Donna and thanks for continuing to spread the word about IBC, Steve. Thanks to both of you, I was one that escaped being "misdiagnosed" for too long. Way to go, too, Dr. C! I especially like the comment "We would like to translate our discoveries from bench to bedside very quickly, as these patients really need new treatments. SO true for all of us fighting IBC without a lot of good options.
|
|
|
DX 11/2010 age 43,BRCA2+,6 rounds TAC,bx mast/ovary removal 5/2011,TNBC tumor 5.1 cm,02/14 nodes positive,37 rads,Cisplatin&PARP trial.Recurrence 2/2012,TN IBC,Abraxane didn't work, Ixempra & Xeloda
|
|
|
|
Topic Options|
Post Reply
|
Page 12> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |