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New Stage IV Diagnosis - Looking for Answers

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MothersDaughterTNBC View Drop Down
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    Posted: Aug 06 2013 at 9:04pm
I have been reading this forum for a couple of weeks now but I am just deciding to post.

My mom was just diagnosed with Stage IV Triple Negative Breast Cancer with liver mets from the start.  The primary tumor was 5x5cm and there are 5 liver mets about the size of a quarter.  She found everything out on Monday (7/15) and started chemo on Thursday(7/18).  She is doing the ACT regimen.  So far she has had 2 rounds of chemo and will have scans after the 4th one.  Hopefully it is doing some work on the cancer.

My dad has been told by several people to get in contact with doctors who specialize in TNBC.  We have been given three names that my mom's local oncologist is going to look in to so they can work together to get the right treatments going.  The three names are Lisa Carey at UNC,
Linda Vahdat at NY Hospital Cornell Medical Center, and Cliff Hudis at Sloane Kettering.  I've seen some other names on this board but I haven't seen the last two mentioned.  My parents live in SC so Lisa Carey is the closest but they would be willing to travel.  Anyone heard of these names?

Also, is it normal for a local oncologist to work with someone with a specialty?  I've seen a lot about second opinions on here and when my parents mentioned it to the oncologist, he said to send him the names that were given to them so that they can work together. 

I am trying to get my mom to come to the forum for the support.  While we are here for support and love her no matter what, I think it would be really good for her to see and talk to people who are experiencing all the emotions she is going through.

Also, this may sound like a stupid question but can someone donate part of their liver?  Everyone in my family has offered to donate a part of their liver since it regenerates but I haven't seen anything on here about that.  Like I said, sorry if that is a stupid question. 

We are pretty desperate for any information at this point. 
Thanks in advance!
Shannon
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2013 at 9:37pm
Hi Shannon,

I'm so sorry to hear about your mother's diagnosis, but glad that you are by her side and seeking information for her.  

I think Dr. Vahdat is the lead investigator in the Copper Trial at Cornell.  
Originally posted by Lee21 Lee21 wrote:

Copper depletion therapy keeps high-risk triple-negative breast cancer at bay

New Weill Cornell study shows anti-copper drug might prevent the spread of cancer to organs

NEW YORK (February 13, 2013) -- An anti-copper drug compound that disables the ability of bone marrow cells from setting up a "home" in organs to receive and nurture migrating cancer tumor cells has shown surprising benefit in one of the most difficult-to-treat forms of cancer -- high-risk triple-negative breast cancer.

The median survival for metastatic triple-negative breast cancer patients is historically nine months. However, results of a new phase II clinical trial conducted by researchers at Weill Cornell Medical College and reported in the Annals of Oncology shows if patients at high-risk of relapse with no current visible breast cancer are copper depleted, it results in a prolonged period of time with no cancer recurrence. In fact, only two of 11 study participants with a history of advanced triple-negative breast cancer relapsed within 10 months after using the anti-copper drug, tetrathiomolybdate (TM).

"These study findings are very promising and potentially a very exciting advance in our efforts to help women who are at the highest risk of recurrence," says the study's senior investigator, Dr. Linda Vahdat, director of the Breast Cancer Research Program, chief of the Solid Tumor Service and professor of medicine at Weill Cornell Medical College.

Dr. Vahdat says four of the study participants with a history of metastatic triple-negative breast cancer have had long-term benefit remaining disease free for between three and five and a half years.

"The anti-copper compound appears to be keeping tumors that want to spread in a dormant state," reports Dr. Vahdat, who is also medical oncologist at the Iris Cantor Women's Health Center at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. "We believe one of the important ways it works is by affecting the tumor microenvironment, specifically the bone marrow-derived cells that are critical for metastasis progression."

In addition, study participants with other forms of high-risk for relapse breast cancers -- either stage 3 or stage 4 -- without evidence of disease after treatment have also fared well. The progression-free survival rate among these 29 patients in the study has been 85 percent, to date.

"As good as these interim findings look to us, we cannot talk about significant benefit until we compare TM treatment to other therapies," she says. Dr. Vahdat expects to launch a phase III randomized clinical trial in the near future.

This research is a report of the first 40 patients. The clinical trial, which began in 2007, has been expanded many times and now includes 60 patients, more than half of who have triple-negative breast cancer.

Deplete Copper to Prevent Cancer Spread

New discoveries in the science of metastasis and examination of the body's utilization of copper to promote cancer spread led to this clinical trial.

Investigators at Weill Cornell, including some of this study's co-authors, have contributed to the recent understanding of the role bone marrow cells play in promoting metastasis. They previously found that a collection of bone marrow-derived cells, which include VEGFR1+ hematopoietic progenitor cells (HPCs), prepare a site in distant organs to accept cancer cells. HPCs also recruit endothelial progenitor cells (EPCs), among others, to activate an "angiogenic switch" that establish blood vessels at the site to feed newly migrated cancer cells.

Breast cancer research studies conducted at Weill Cornell have also found that immediately prior to cancer relapse, levels of EPCs and HPCs rise significantly further, suggesting that the EPC target of the copper depletion approach is one that makes sense.

"Breast tumors want to move to specific organs, and these EPCs and HPCs cells leave a 'popcorn trail' for cancer cells to follow, as well as provide the building blocks for blood vessels to greet them as they arrive," Dr. Vahdat says.

Copper is critical to mobilizing these cells. Copper is essential to the metastatic process. It is a key component of enzymes that help turn on angiogenesis in the tumor microenvironment, and it also appears to play a role in directing cancer cell migration and invasion, according to researchers.

TM is a copper chelation compound used to treat Wilson's disease, a hereditary copper metabolism disorder, and has been studied in phase I and phase II clinical trials for a number of disorders. Animal studies have demonstrated that depleting copper decreases proliferation of EPCs, as well as blood vessel formation and tumor growth.

Dr. Vahdat's study is the first human clinical trial to utilize a copper depletion strategy to modulate EPCs in breast cancer patients with an extraordinarily high risk of relapse from hidden residual disease. Most of the studies in other solid tumors with visible advanced disease have been disappointing, say researchers.

Despite improvements in breast cancer therapy, there is significant risk of relapse in a high-risk subset of patients. The risk of relapse in stage 3 patients is 50-75 percent over five years, and patients with stage 4 breast cancer always recur. Triple-negative breast cancer patients have a poorer prognosis even when diagnosed in early disease stages.

"These triple-negative patients represent a substantial proportion of metastatic breast cancer patients," says Dr. Vahdat. "These are the patients that need the most attention, which is why we have focused most of the resources of our Metastases Research Program on this problem."

In the study, researchers found that 75 percent of patients achieved the copper depletion target using TM after one month of therapy, and that copper depletion was most efficient (91 percent) in patients with triple-negative tumors, compared to other tumor types (41 percent). In copper-depleted patients only, there was a significant reduction in EPCs, and the 10-month relapse-free survival was 85 percent. In addition, TM was found to be safe and well-tolerated in patients.

The study shows copper depletion appears to inhibit the production, release, and mobilization of EPCs from the bone marrow, leading to a suppressed angiogenic switch and tumor dormancy.

"There are a lot of cancer experts at Weill Cornell working very hard to understand this precise mechanism, define the clinical benefit in this ongoing copper depletion drug clinical trial, and determine its future study," says Dr. Vahdat. "Keeping cancer dormant is what we all want for our patients -- especially triple-negative breast cancer patients at highest risk of recurrence."

###

Study co-authors include Dr. Sarika Jain, Maureen M. Ward, Naomi Kornhauser, Dr. Ellen Chuang, Dr. Tessa Cigler, Dr. Anne Moore, Diana Donovan, Christina Lam, Marta V. Cobham, Sarah Schneider, Sandra M. Dr. Hurtado RĂșa, Celine Mathijsen Greenwood, Dr. Richard Zelkowitz, Dr. J. David Warren, Dr. Maureen E. Lane, Dr. Vivek Mittal and Dr. Shahin Rafii from Weill Cornell; Dr. Jules Cohen from Stony Brook University Cancer Center, Stony Brook, N.Y.; and Steven Benkert from NewYork-Presbyterian Hospital.

The study was funded by the grants from the Anne Moore Breast Cancer Research Fund, Stephen and Madeline Anbinder Foundation, Rozaliya Kosmandel Research Fund, Susan G Komen for the Cure, New York Community Trust, Cancer Research and Treatment Fund, Manhasset Women's Coalition Against Breast Cancer and Berman Fund.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2013 at 9:37pm
Sharon,
I am so sorry to hear about your mom.  Where are you in SC?  I am in Greenville.  I have gotten good care here (possibly somewhat by good fortune) , but I would probably go to see Lisa Carey at UNC.  I believe she is one of the top oncs when it comes to TNBC.  Likely Steve will be on shortly to give you some additional information.  I would do things differently if I knew then what I know now.  I probably would have tried to get into see Lisa Carey.  If I were ever to have a recurrence, I would go to her or to MD Anderson.
 
I hope you get some answers soon.
 
Lori 
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2013 at 9:38pm
Dr. Cliff Hudis

Originally posted by 123Donna 123Donna wrote:

Dr Clifford Hudis - Memorial Sloan-Kettering Cancer Center, New York, USA

Dr Clifford Hudis talks to ecancer at MBCC 15 about triple negative breast cancer and the need to develop subtypes for this specific type of breast cancer in order to develop new targeted therapies.

 This is already being done with gene expression profiling and an example where it has been successful is with androgen receptors and treating with the prostate cancer drug bicalutamide.

http://ecancer.org/video/2137/advances-in-treatment-of-triple-negative-breast-cancer.php

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2013 at 9:42pm
Both Dr. Lisa Carey and Dr. Carey Anders are very knowledgeable with TNBC.  




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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2013 at 10:06pm
Cliff Hudis is very well known and is the current president of ASCO (American Society of Clinical Oncologists), the premier organization of academic and non-academic oncologists. He is very knowledgeable in triple negative BC.

Linda Vahdat is also well published and is Director of the Breast Cancer Research Program and Chief of the Solid Tumor Service at Weill Cornell Medical College. 

Of the two, I know more of Dr Hudis than Dr Vahdat but not personally.

Dr Carey is one of the early people involved in TNBC and several members are either her patients or have seen her in consultation.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2013 at 10:09pm
Other experts in TNBC that I know of:

Dr Eric Weiner (Dana Farber Cancer Institute in Boston)
Dr George Sledge (Stanford)
Dr Hope Rugo (UCSF)
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2013 at 12:13am
Thanks everyone! Your info has been very helpful. Not sure who would be best. Such a difficult decision!

Lori - they are in Columbia. The oncologist they have is a general oncologist. He's moved really fast so that has made us feel good with him but definitely want someone with experience. I've heard good things about Lisa Carey so if all things are equal, she would be the one they go with.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2013 at 12:16am
Their oncologist did mention he was going to look at research so I'm assuming he's talking about clinical trials.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2013 at 6:59am
Dear Shannon,

Welcome to our TNBC Foundation family and sorry you have need to be here.

You have received good suggestions on Breast Medical Oncologists who are TNBC savvy but in my opinion, most oncologists will not want to see your Mother while she is in the middle of treatment and will only see her once she has her next scan and further if her cancer seems to be responding to treatment they will not recommend changing the treatment. So the timing of all this(a second or third opinion) is important. 

I am leaving MD Anderson Cancer Center in Houston now and that is another place I would suggest your Mother visit. 

Sending you my contact info if you would like to talk. I may be able to help you see certain oncologists sooner than later. I am a patient advocate, working on a volunteer basis and I will not give you any medical advice. I am not a medical professional.

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2013 at 8:39pm
Thanks everyone!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2013 at 4:27pm
Hello Shannon,
I am just following up on your mother.  I pray they got things resolved as far as doctors and treatment plan.  I pray your mother is doing well.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2013 at 9:17pm
Thanks for asking Lillie!

She went to the doctor on Monday and the mass in her breast is now 2.5x4 (was 5x5). Of course this is a rough estimate being that it was a physical exam rather than a more accurate test. Even so, hearing that it is shrinking is very good news. Hopefully it is doing the same to the liver. She will have scans after the next chemo which is the 29th.

They are meeting with Lisa Carey on Thursday. They have a tumor board on Wednesday and I guess they will see what treatments or clinical trials might be good for her.

Everything is moving right along! :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2013 at 12:20am
Shannon, MothersDaughterTNBC,

Great to hear of you Mom's breast tumor shrinkage.
How good and wise she will have the opinion of Dr. Carey and the tumor board on her plan of care.
And how fortunate she is to have a such a great Daughter and Advocate in you.

It is important for the caregiver to remember to take care of the caregiver.......so the caregiver can
continue to give care/support for the patient.
Keep in mind there is a TNBC Helpline for patients and family members.
The TNBC Helpline is staffed by experienced oncology social workers with specific knowledge of triple negative disease. In addition to counseling, TNBC Helpline staff can assist callers in availing themselves
of the various other services CancerCare has to offer including, where appropriate, helping patients
apply for co-pay assistance, transportation and other social services.
To speak to one of the expert social workers, call the toll free number
Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.        877-880-TNBC (8622)
You may or may not find something helpful on the thread:
Support info: spouse/main support person   (actually any support person)
http://forum.tnbcfoundation.org/support-infospouse-main-support-person_topic9558.html


With caring and good thoughts to you and your Mom,
Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2013 at 1:58am
Thanks so much for all of that info, Judy!

A little update - my parents went to UNC on Thursday and they did some genetic tests, protein tests, and another test to see if she qualifies for a particular trial. This will probably take a while to find out.

The tumor in the breast is now 1x1 so it is continuing to shrink. Will find out about the liver in a few weeks. Will continue to do Taxol after the AC. If the AC is working on the liver, Doxil will be a good chemo to try after Taxol.

Dr. Carey told her between 90 days and 5 years is "normal" for stage 4 but 5 years is pretty rare. A pretty wide range but we want more. She did say there are a lot of trials out and coming in the future so there is hope. That was pretty tough for her to hear but I have sent her stories from a bunch of ladies on this board and some from other forums to give her hope. So thanks for sharing your stories.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2013 at 11:26am
Shannon,

So good to hear the chemo is working to shrink the breast tumor and hope it's doing the same for the liver.  Glad they got into see Dr. Carey.  Please keep us posted.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 12:50pm
Quick update: Mom had CT scan and they got the results yesterday. Everything is shrinking! Woo hoo! The onc was so pleased and the nurse cheered when she looked at the results! Instead of moving to taxol, she will be doing doxil every 4 weeks. She will do 2 and then rescan. I believe she will do a total of 4 and then move on to taxol or clinical trial.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 8:33pm
Great news, thanks for the update!
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2013 at 1:04am
Update: My mom just started Doxil. So far so good. She puts lotion on her hands and feet to avoid hand foot syndrome. She has more of an appetite than when she was on AC. I really hope this chemo knocks the liver mets out. The onc said there was a max but I have seen in other places that people stay on it for longer periods of time.

UNC called with the results of the genetics and protein (nectin-4) She does not have the BRCA mutation and she does have the protein for the trial. I'm not sure why but the lady my dad spoke with said that while she did have the protein, she did not feel it was the best trial for my mom. She did, however, give my dad 3 trials that have either just started or will start very soon that she may be eligible for. I guess we'll wait and see.

I see the platinum drugs and parp inhibitors seem to work for BRCA mutations. What is in the pipeline for non BRCA TNBC? Anybody know?

Hope everyone is doing well!
Shannon
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2013 at 10:44am
Shannon,

My friend is on her third go around of Doxil and it seems to work well for her gynocological cancer and hasn't lost her hair.  I've heard there is a limit, but don't know what it is.  http://www.doxil.com/

There seems to be much research on TNBC looking at different inhibitors.  Please check out this link:

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

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