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Important TNBC study-King Lab

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 8:51am
MsBliss,

I'm in the same situation as you.  I've never received my results.  I sent my blood work in April of 2012.  I think it was in February I heard back from Greta in an email that they were trying to wrap up all the testing by the following month.  It's almost June and still no news.  Sigh.

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 jadesloge Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 9:42am
Send her an email. I got my results a couple of days ago and I sent in my samples in Nov. 2012. It may have just gotten lost in the paper shuffle. 
By the way, of the 42 DNA mutations they tested, I had none. Interesting.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 9:51am
I sent another email.  My bloodwork was mailed off April 13, 2012.  
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 11:07am
Dear Ms Bliss,

I can't even find the proper words to apologize for the poor treatment you received. Obviously, I have had nothing to do with the lack of response but I am the guy who first suggested women look into the study and many have and many have received results. I would say the vast majority have. 

I feel terrible that you have been waiting such a long time. That is inexcusable in my view. If they lost your sample, let them tell you that and you can re-submit (I would guess) and then they can expedite the results (again a guess). 

Ms Bliss, I will be speaking to Dr. King on Thursday on another matter and if you wish to send me your name/contact info in a PM I will mention it to her. In the PM please also give me permission to give Dr. King your name/contact info. I am also sending you my contact info in a PM if you would like to talk.

Just so everyone knows and I assume everyone already does realize it but I have no knowledge of anyone's test results and have never asked and will never ask. Some of you have written publicly about your results and that is of course, your decision but the study is private and that will remain so. Many studies are not informative to the individual participant. One of the things I like most about the King Lab is that when they do a study, each participant is informed.

Again, you have my apologies.

warmly,

Steve


Edited by steve - May 21 2013 at 11:12am
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 11:16am
Dear Donna,

I just noticed that you still have not received your results. 

As you know I wrote them months ago and was very disappointed to see that you are still without results.

I will mention your name to Dr. King when I speak to her...hopefully Thursday..

you, too, of course have my apologies and anyone else out there who is still waiting...if any one is please send me PM...

I have had nothing to do with any of the testing including the delays but I do apologize that those of you who have not received results are still waiting.

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 Genie Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 1:23pm
Steve, I still have not received my results either. My samples were sent in April 2012. It would be nice to know if they plan on sending the results out or if they just didn't do them.

Thanks,
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 4:24pm
Dear Steve,

Thank you for your support with this matter.  I am jotting off some emails to everyone this morning and if I do not get a response, I will send you my info and take you up on your offer to intercede.

Many thanks.
Bliss


Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 4:39pm
will update later...


Edited by MsBliss - May 21 2013 at 5:18pm
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 5:26pm
I eventually did get results.  It took a long time, like 10 months.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 8:44pm
Dear Ms. Bliss,

I would greatly appreciate it if you can give it till next Monday before you do what you mentioned in your email. 

And having said that you are of course free to do what you wish.

I am not excusing any inaction. As I wrote above, I feel that what was done was inexcusable, and you still deserve a proper explanation, but you have said some things that just don't resonate with me.

Dr. King is one of my personal heroes. She has dedicated her life to research without any thought of personal gain. There is actually a movie coming out soon about her life called Decoding Annie Parkerand Helen Hunt plays Dr. King. Not only is Dr. King a brilliant researcher, she truly has a heart of gold and is totally honest with ethical standards that are unquestioned. She has been in my daughter's life and my life for the past eight years and I value our friendship more than words can say. She would never knowingly mislead anyone.


I have not met Dr. Bernier but from Dr. King's description of her it is inconceivable to me that she would knowingly lie. Perhaps when she told you would have the results by XYZ date that is what she was told by a lab technician and it didn't happen. However, the ultimate fault in that situation is Dr. Bernier's in my opinion because she should have followed up-made a note to herself to make sure your test results went out and when they didn't, contact you with an apology/explanation. But lying to you-no way. Dr. Bernier was working on this as a special project and is now a Breast Surgical Oncologist and remains a caring physician whose agenda regarding our community is to try and help us.

The other piece to this whole story is a wonderful Certified Genetic Counselor named Jessica Mandell. I have only spoken to her twice, I think, but I was very impressed by her intelligence and her dedication to her work. It is my understanding (as has been written before here by others) that she was on pregnancy leave and that conceivably could have slowed things down a bit.

Ms Bliss, Dr. King will not be back in the lab until Thursday afternoon. I received an email from her yesterday giving me that schedule and I will try my best to speak to her, then. I look forward to getting your information. 

I will be speaking to Dr. King as well about Donna and Genie and will be able to give her their contact info.

I can't tell you what the outcome will be. But I can promise you that you will get an honest explanation from the King lab.

You have been more than patient. Perhaps just a few more days? I hope so. 

The other part of all of this is that I believe that the study has found some rare mutations in certain women that are important and clinically significant. I do not have any of those details. I believe just as Dr. King's identification of the BRCA mutation has saved thousands of lives, this study may, too. 

I hope that you, Donna and Genie and anyone else who is still waiting (please post and/or send me PM) will get a proper explanation soon. I will try my best to get this resolved, even though it is out of my hands.

But please, please know that despite the delays, for whatever reason, you are dealing with honorable people. Of that I am 1000% certain.

And again, I fully sympathize with how you feel after all the efforts you went through to join the study and the incredible patience you have shown. Again, I am so sorry it has been such a frustrating journey.

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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2013 at 11:24pm
Steve,

Thank you for initially posting and letting us know about the TNBC King lab study.
Many of us would not have known about this study if you had not posted.
Some have received their results, while others have not.
Thank you for your plan to follow up.

When you speak with Dr. King, would it be possible to find out if there are "yes" or "no" answers
to 3 questions about the study?   
1. Is the Dr. King lab study now closed?
2. If the study is now closed, is there any plan to re-open it?
3. Did the testing done by the Dr. King lab study the include the same testing as the BART test
      (BRCA Analysis Rearrangement Test) ?


Thank you for your support/work for the TNBC Family,
Grateful for today..........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 3:40am
Dear Steve,
Thank you for your counsel, your advice and your perspective.  I think you are correct with your appraisal of the situation.

This afternoon, I spoke with them regarding my results.  I will not need any intercession on your part.

As far as what was said from my self-removed post, it was largely written in the frustration of long delays, misstatements, unreturned phone calls and unanswered emails.  It did have, as it's source a kernel of, well, not truth, but more like several misfires which I have to believe were nobody's fault.  We discussed this in detail and so enough said. 

I know these are dedicated people doing a wonderful service.

Best,
Bliss




Edited by MsBliss - May 22 2013 at 5:23am
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 8:20am
Bliss,

Did they tell you if you'll be getting your results?  Still waiting on mine after 15 months.

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 MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 2:19pm
Hi Donna,
We did discuss my results, and it's a game changer for me, especially for surveillance, which I have to step up now that I know what is potentially in play. 

In my case, people, including my oncologist, were asking me what was going on with my test results,  so that was triggering lots of concern and anxiety.

Gene studies simply don't take this long, so it's not clear what the delay is rooted in, but there seems to be multiple choke points in their protocol and they all converged enough to cause this long wait for some of us. 

Let them know your wait status and see if that doesn't move things along.

All my best,
Bliss
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 2:32pm
When I received the BROCA test results from the King Study, it said they did not find any mutation that is "clearly damaging to gene function".  No mention was made of the BRCA1 variant of unknown significance that was found in my Myriad test.  So I think the King lab is reporting only those mutations that are disease related (see their very carefully worded language).  That is not to say that variants were not found that were different from the normal population - just that a disease connection has not been reported at the time of their study. 
My question is whether the King lab will be reviewing these variants as more data are reported in the literature regarding disease significance.  Since they do not tell us what those variants are there is no way we will be able to do so ourselves.
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 2:37pm
Dear Bliss,

well I guess it was a good thing that you joined the study. My strong feeling is that knowledge is power. 

Again, I am sorry for the long delay and the angst it caused you.

Thank you for your patience and graciousness.

I wish you good luck with your surveillance.

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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 2:58pm
Dear Lee,

A suggestion regarding your VUS, if you haven't done so already.

I would suggest you contact a friend of mine at Myriad Genetics who is one of their Senior Certified Genetics Counselors. He was my CGC and I have known him for 8 years. He is a very smart guy and lovely man. 

He is very experienced with the VUS world. 

Please send me a PM or email if you would like the information. Hope you are doing well. Saw Dr.S. recently and he seems to be doing well. Hope you, too.

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 Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 5:58pm
Hi Steve,
I did speak with ER at Myriad, at your recommendation, when I was first diagnosed.  He was very patient and answered our many questions. I was assured by my own genetic counselor here at UM that they routinely review the BRCA database for new information.
Hope you are doing well.  I miss having Dr. S close to home.
All the best,
Lee
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2013 at 6:01pm
Steve or Bliss,

Do you have a contact phone number for the King Lab?  If you have a number you can send it to me in a PM.

Thanks,

Donna


Edited by 123Donna - May 30 2013 at 2:16am
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 MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2013 at 7:34pm
Donna,
Check your mail.....

Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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