Any metaplastic bc patients |
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mags20487 
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Joined: Aug 18 2011 Location: Florida Status: Offline Points: 151 |
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 Topic: Any metaplastic bc patientsPosted: Aug 21 2011 at 9:38pm |
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I was just diagnosed with trip neg metaplastic bc on Wed and am have a bmx on Tuesday this week...wooo...someone stop the bus....but my decision came on Friday when I met again with the surgeon after researching what the metaplastic type meant. This is the scariest time of my life right now and I am praying that my lymph nodes are clean but I have a mass in lymph as well that has been causing me pain/discomfort for a couple of weeks. I would love to hear from any others with this type to see how you have done in treatment as well as any suggestions on dealing with this rare type.
Maggie
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Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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123Donna
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Posted: Aug 21 2011 at 10:15pm |
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Maggie,
We have some sisters on this forum with metaplastic bc. I hope they will see your post and comment on your thread. Here are a couple of threads we've had discussing metaplastic: http://forum.tnbcfoundation.org/metaplastic-bc-mbc_topic8854.html?KW=Metaplastic http://forum.tnbcfoundation.org/my-visit-to-md-anderson-and-metaplastic-bc_topic8853.html?KW=Metaplastic |
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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 |
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mindy555
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Posted: Dec 18 2011 at 3:31am |
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I too have areas of chondroid (matrix) metaplasia. However, all my MDA onc could say was they have a tendency to be more chemo resistant and there's very little understanding about metaplastic breast cancers at this point.
When you're starved for information it's not exactly what you want to hear. She told me initially not to freak out when I saw this on my report. It was never mentioned in my original pathology report. She did say my original IDC only had small areas of metaplasia- meaning changes in tumor... and chondroid specifically means it takes on the characteristics of cartilage. |
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Dx July 2011 56 yo
Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
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TracyAMac
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Joined: Aug 01 2010 Location: Toronto, Canada Status: Offline Points: 401 |
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Posted: Dec 20 2011 at 9:56pm |
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How are you doing Maggie?
One of two BC tumors I had last year was metaplastic I have posted a few articles over the last year re this type of cancer- would be happy to forward them to you if you are interested. One of them detailed the subtypes of MBC As Mindy 555 has experienced, most oncs don't treat MBC from other types of TNBC because there really isn't much information or proven strategies out there...hopefully the body of research will continue to build Tracy in Toronto |
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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells Taxotere&Cytoxan x6 Bone cancer 1980 age17;surgery&chemo AC+Methotrexate BRCA-ve On hormone therapy & Metformin Trial |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Dec 21 2011 at 1:23pm |
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Dear all,
One of the best parts of 2011 for me was meeting Dr. Stacy Moulder at MDACC. In my opinion, she possesses all the characteristics of a wonderful oncologist-a brilliant researcher, educator, an expert in clinical trials and and a knowledgeable physician with a caring heart.
http://faculty.mdanderson.org/ She was the Principal Investigator of a clinical trial at MD Anderson that was effective for some metaplastic breast cancer patients..You can scroll down to page 3 of the following to read about it. I say was because due to the shortage of Doxil the trial, referred to in the above link, has been suspended from recruiting new patients. It is my understanding there is a new Phase I study with temsirolimus- It is my understanding there is no randomization, as this is a Phase I study. Physician choice and ‘slot availability’ decide which regimen the patient receives. There are three arms to the study- In all three arms the patient receives Temsirolimus and Bevacizumab (Avastin) and in one arm receives Carboplatin...in another arm Paclitaxel...in the last arm Sorafenib.. Patients are excluded from regimens if they have not tolerated the drugs in the past. I am not a medical professional and I am not suggesting anyone join this trial, or not, and also I do not know if any of the combinations mentioned above, in this NCT01187199 study have produced any complete responses to Metaplastic Breast Cancer (MBC). As far as I know Metaplastic Breast Cancer is very difficult to treat. Hopefully this trial will work for some. But it may not. It is also essential that you understand and discuss all the criteria with your oncologist. The only persons a patient should rely on regarding treatment are their medical team. All I am saying is that if you have metaplastic breast cancer you might want to print this study up and give it to your oncologist who can then speak to the folks at MD Anderson Cancer Center. If your oncologist feels it might be worthwhile to join the study then the next step would be to try and see what arm, if available, might be suitable. all the best, Steve |
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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
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Dec 21 2011 at 1:39pm |
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Tracy,
Can you send me any articles you have on Metaplastic? I have a TNBC friend who's metaplastic that's interested in reading about it. She's completed treatment. I've told her about this forum but I don't believe she's a member yet. Hugs, Donna |
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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 |
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mags20487
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Joined: Aug 18 2011 Location: Florida Status: Offline Points: 151 |
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Posted: Dec 22 2011 at 4:16pm |
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Thanks Tracy for checking on me...I am doing well. #8 and last chemo is next week. My final path report did not include metaplastic in dx but docs here are treating it as any TN. No one really seems to know how to treat it. I have put my faith in them and believe that the treatment is working. Radiation begins in January. I would love any articles you have on metaplastic BC
Maggie
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Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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christina1961
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Posted: Dec 26 2011 at 10:13pm |
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On my initial core needle biopsy, I had some areas of squamous metaplasia but my onc said I do not have metaplastic BC. What constitutes metaplastic BC? Thanks!
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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.
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SagePatientAdvocates
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Posted: Dec 26 2011 at 10:33pm |
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Hi Christina,
all the best, Steve
Edited by steve - Dec 26 2011 at 10:45pm |
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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
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christina1961
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Posted: Dec 26 2011 at 10:41pm |
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Thank you, Steve!
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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.
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mindy555
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Posted: Dec 27 2011 at 9:00pm |
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Dear Steve,
I couldn't get this link to open and am very interested in the subject. Did anyone else have trouble opening? My browser is working fine tonight. I wonder if it could be a glitch in the link or from my end. Thanks Steve, Mindy |
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Dx July 2011 56 yo
Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
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mindy555
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Posted: Dec 27 2011 at 9:06pm |
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Here you go. There was a space preventing the link to open. Hope this works.
http://surgpathcriteria.stanford.edu/breast/metacabr/printable.html |
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Dx July 2011 56 yo
Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
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christina1961
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Posted: Dec 28 2011 at 9:49am |
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Thanks, Mindy. I had trouble with the link, too and ended up taking out the last two words until I could get to it- but thought it was just my browser.
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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.
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TracyAMac
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Posted: Dec 28 2011 at 7:36pm |
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Dear Donna, Maggs and others looking for articles on Metaplastic BC
Below is an article I posted in August. I think Steve also posted a very interesting piece around the same time. I will see if I can find it Tracy in Toronto Steve and I have been comparing notes on articles about Metaplastic BC - (almost always TNBC too). I apologize if this is a repeat of an earlier post. The article does a good job of defining the 5 sub types of MBC, and includes pics of various cell types but as the article concludes there are some limitations with the findings as the MBC participants were at an early stage of diagnosis and treatment compared to other research participants. http://koreanjpathol.org/upload/journal/kjp_44_6_605.pdf Tracy in Toronto |
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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells Taxotere&Cytoxan x6 Bone cancer 1980 age17;surgery&chemo AC+Methotrexate BRCA-ve On hormone therapy & Metformin Trial |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Mar 28 2013 at 7:57pm |
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bumping up for any new metaplastic TNBC members who have joined since Dec. 2011 There is at least 1 other threads related to metaplastic TNBC breast cancer: Please note the following thread is in the recurrent section. Sometimes the newer members wait awhile.....and sometimes they don't...... before reading the threads in the recurrence section. http://forum.tnbcfoundation.org/my-visit-to-md-anderson-and-metaplastic-bc_topic8853.html Grateful for today...........Judy Edited by Grateful for today - May 10 2013 at 3:13pm |
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corinnajune
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Posted: May 10 2013 at 1:53pm |
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I was diagnosed with triple negative metaplastic bc in September 2011... I went through five and a half months of chemo, a modified radical mastectomy, and seven weeks of radiation. No cancer was found in lymph nodes, and so far I seem to be clear.
I heard about this forum through the 'Stupid Cancer Show' podcast, so here I am! I've kind of been on a quest lately to find people in the same boat as me- we are a rare breed!
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mags20487
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Joined: Aug 18 2011 Location: Florida Status: Offline Points: 151 |
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Posted: May 10 2013 at 5:00pm |
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corrinajune...we have a FB page too....It is a private group so you much ask the admins to add you but what a great group...over 250 and counting! Come on over
Where in FL are you? I am a Melbourne girl! Maggie
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Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: May 11 2013 at 12:32am |
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corinnajune,
Did not have the metaplastic type of TNBC but wanted to say: Welcome. You will find many caring and knowledgeable women and men here on the forums. Good to hear you are post treatment and clear. May continued good health be yours. There is a thread "TNBC info on this website" that might have some helpful things........ some of the info is for the newly diagnosed but the thread highlights some general info. http://forum.tnbcfoundation.org/tnbc-info-on-this-website_topic10166.html With caring and positive thoughts, Grateful for today................Judy Addendum: Just made a thread for the 'Stupid Cancer Show' podcast that corinnajune mentioned. Podcast at: http://www.blogtalkradio.com/stupidcancershow/2013/05/07/triple-negative-breast-cancer There is also a Stupid Cancer website. http://stupidcancer.org/ http://forum.tnbcfoundation.org/topic11167_post113480.html#113480 Edited by Grateful for today - May 11 2013 at 12:33am |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: May 11 2013 at 12:44am |
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Hi Corrinajune,
I have a TNBC metaplastic friend i met thru our cancer support community program. She's 3 years out and doing great. Donna |
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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 |
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corinnajune
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Joined: May 10 2013 Location: Florida USA Status: Offline Points: 4 |
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Posted: May 21 2013 at 1:55am |
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I'm in Gainesville FL
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