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Important TNBC study-King Lab

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Topic: Important TNBC study-King Lab
Posted By: SagePatientAdvocates
Subject: Important TNBC study-King Lab
Date Posted: Feb 20 2012 at 7:55pm
Dear all,

I believe the following King Lab study is an extremely important one for our community.

GENOMIC ANALYSIS OF INHERITED BREAST CANCER AMONG WOMEN DIAGNOSED

WITH TRIPLE-NEGATIVE DISEASE OR WITH DIAGNOSIS AT AGE 40 OR YOUNGER

Please see the information, that I received, this afternoon, in a two page letter from the King lab, along with their permission to publish it. Please see the complete letter, below, and be guided by the letter, not my words, please.. 

The research study being done by the Mary-Claire King Lab at the University of Washington is broad in scope. As you will see in the letter below almost any woman with TNBC who has been commercially tested for the BRCA mutation, in the U.S., can be enrolled in the study, if she wishes, no matter the results of the testing and no matter her family history. It seems that scientists are finding that in some BRCA+ women there are other breast cancer genes that are not tested for commercially.

Please read the letter carefully, in its entirety. It came through with different fonts when I cut and pasted it from my download, but it is complete. The first page ends with instructions to write to Dr. Bernier or Jessica Mandell. The second page starts with the word Protocol and ends with Dr. King’s info.

Unchanged from my original post is the fact that participation is free as the study is funded by our U.S. National Cancer Institute and private foundations. Also unchanged from my original post is that every woman will be told her individual results. Again, I find this policy of the King lab extremely important. Knowing if you have other gene mutations that cause breast cancer may turn out to be important information for you and family members.

Further information that I have is that anyone living anywhere is eligible to join the study as long as the criteria are met and the blood samples can be sent expeditiously.

n.b. I am adding this today March 20th. I just found out from a wonderful young man, overseas, that he was told that unless his wife’s blood is drawn and sent FedEx in the U.S. his wife can’t join the study. I confirmed what he was told, today. This is a consequence of holdups in U.S. customs since 9/11. Just want to make sure our overseas members are aware of this restriction and you have my apologies for the original misinformation. Totally unintentional but I feel especially bad about it. Again, sorry, my friend.

For people in other countries there is no requirement that your BRCA testing had to be done in the U.S. Specifically, dear sister Helen, if you had your BRCA testing done via Canadian Health Service you can join the study as long as blood is drawn and sent from U.S.. Anyone who has a VUS result is also eligible to join as the criteria is that you have been BRCA tested, not what your results are.

Summing up, any woman who was diagnosed (at any age and with or without family history) with TNBC and tested BRCA positive or BRCA negative, by commercial tests in this country (if in the U.S.), is eligible for the study. Also, any woman under the age of 40, with any type of invasive breast cancer is eligible for the study, as long as they tested BRCA+ or BRCA-. Anyone who was tested in other countries can join the study if they meet the criteria, but there blood draw for the study must be done in the U.S. Again, please do not rely on my words. Please look at the letter from the King Lab below.

The other new information, from my original post is that there is an estimated six months before test results are available. 

I would encourage all here to discuss this study with your medical team and Certified Genetic Counselor.
Please do not rely on any of my words rather be guided by the two page letter and also information you may receive after writing to Dr. Greta Bernier or Jessica Mandell. Please confirm anything I have written above with them. It is also my understanding that one of the criteria is that for a woman with TNBC to be considered for the study it must be determined by Dr. Bernier, via your pathology report that the cancer was invasive which is overwhelmingly the case with most TNBC. That is why I wrote "almost any woman” above.

If anyone is interested in this study, please write to Dr. Bernier at the email shown below gretar@uw.edu

For those of you who have written to her already at the other email address I showed in the other thread I would suggest writing to her again if you haven’t heard from her within a week.

It is not a requirement to do so but I think it would be helpful if you mention that you read the letter from the King lab on the TNBC website.

warmly,

Steve

p.s. I consider Dr. King to be one of the country’s leading experts on breast cancer. She is the one who first identified and named the BRCA1 mutation in 1994. She and her marvelous lab continue to try to unravel some of the mysteries and I hope this study will do much to advance the science. Her mission is unchanged and pure-to help women with breast cancer. Yes, she has other interests, scientifically, but breast and ovarian cancer remain her main focus. 

She is absolutely one of the most extraordinary women I have ever met and I am honored that she is in my life. 

warmly,

Steve



University of Washington

SCHOOL OF MEDICINE

________________

GENOMIC ANALYSIS OF INHERITED BREAST CANCER AMONG WOMEN DIAGNOSED

WITH TRIPLE-NEGATIVE DISEASE OR WITH DIAGNOSIS AT AGE 40 OR YOUNGER

Dear Colleagues and Friends:

We are expanding our research studies of inherited predisposition to breast cancer. For more

than 35 years, we have studied breast cancer in families severely affected with the disease. We

are now able to extend these studies to include two additional groups of women: women

diagnosed with breast cancer at age 40 or younger, regardless of family history, and women

diagnosed with triple negative (i.e. ER negative, PR negative, and HER2 negative) breast

cancer, also regardless of family history.

The reason for expanding our study is that patients with triple negative breast cancer or with

very young age at diagnosis are more likely to carry inherited mutations in BRCA1, BRCA2, or

any of the other known breast cancer genes. With current genomics technology, we can fully

screen all these genes efficiently.

Our study includes complete screening of all known breast cancer genes, including BRCA1 and

BRCA2 and approximately 20 other genes. We use genomics tools developed in our lab for this

purpose. Our tools detect all classes of mutations in these genes, including genomic

rearrangements of all sizes. The study is a research project, sponsored by the U.S. National

Cancer Institute and by private foundations, so there is no charge to participants. Each

participant receives her results, and with her permission, her results are also sent to her

physician and genetic counselor. Our study is intended for women who have already been

screened commercially for BRCA1 and BRCA2.

Eligibility

Criteria for the study are as follows:

• Invasive breast cancer diagnosed at age 40 or younger, regardless of family history, OR

triple negative invasive breast cancer diagnosed at any age, regardless of family history

AND

• If in the U.S., prior commercial testing for BRCA1 and BRCA2, regardless of results of

that testing.

Referral

Potential participants may refer themselves, by writing to Dr Greta Bernier at gretar@uw.edu to

express interest. Alternatively, physicians or genetic counselors may refer potential participants

by writing to Dr Bernier or to Jessica Mandell, MS, CGC, at jmandell@slc.edu

Department of Medicine and Department of Genome Sciences

University of Washington, Seattle WA 98195-7720


Protocol



Potential participants are asked to write to Dr. Bernier expressing interest. She will answer by email, asking for faxed copies of pathology reports and of prior results of BRCA1 and BRCA2 testing

After confirming eligibility, Dr. Bernier will send study details, the consent form approved

by our IRB for the project, and a questionnaire regarding breast cancer risk factors and family history.

Shortly thereafter, our genetic counselor Jessica Mandell will contact the eligible participant by phone to review the study and obtain consent.

Ms Mandell will also send the participant a kit for obtaining a blood sample from which 

we will extract DNA and RNA. The kit will include a

prepaid FedEx return label with our address. We will ask participants to include the

questionnaire and other paperwork in the kit when returning it to us.

No travel is necessary for participation.

Results and privacy


Our lab is CLIA approved to provide genetic testing results. Testing will require approximately 6 months from the time we receive a blood sample.


 If we find no abnormality in any of the known breast cancer genes, we will send a letter with that information to the the participation.

If we find an abnormality in one or more of the genes, Jessica Mandell will contact the participant by phone.

She will discuss the results and explain what is known about the abnormal gene.

We do not provide medical advice, but with a participant’s permission we will provide results to the participant’s physicians and genetic counselor.

We keep results completely confidential,

providing them to anyone else only with the participant’s explicit consent.

Thank you for your interest in our study. Please accept our very best wishes.

Sincerely,

Greta V Bernier, MD

Resident Physician, Department of Surgery

Research Fellow, Division of Medical Genetics

gretar@uw.edu

Jessica B Mandell, MS, CGC

Certified Genetic Counselor and Research Coordinator

jmandell@slc.edu

Mary-Claire King, PhD

American Cancer Society Professor

Department of Medicine and Department of Genome Sciences

mcking@uw.edu

School of Medicine



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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



Replies:
Posted By: cheeks
Date Posted: Feb 21 2012 at 9:08pm
I received an email from Dr. Bernier this evening with the associated paperwork. 

Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: mags20487
Date Posted: Feb 21 2012 at 10:00pm
I am def going to contact them and participate if I am found eligible.  I really want to know if my children are at risk of getting this rotten disease.
 
maggie


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


Posted By: debB
Date Posted: Feb 21 2012 at 10:14pm
I sent an email on Sunday and I too got a response back today!! I also passed this on to my oncologist in Indi because he had not heard about it yet. Thanks so much Steve for posting this!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: SagePatientAdvocates
Date Posted: Feb 21 2012 at 10:14pm
Thanks for letting us know, Blair and Deb. Glad you received a prompt response.

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


Posted By: 123Donna
Date Posted: Feb 21 2012 at 10:15pm
Blair,

I received an email too.  I need to download and print out the paperwork and start filling it out.

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: SagePatientAdvocates
Date Posted: Feb 21 2012 at 10:17pm
Thanks to you, too, Donna for the info....

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


Posted By: krisa
Date Posted: Feb 21 2012 at 11:31pm
Heard back from Dr. too. I am going to bring this to my onc's attention

ps... This study is really exciting for me, cant wait to see the results.


Posted By: kirby
Date Posted: Feb 22 2012 at 2:35am
thank you Steve. I received and downloaded my info this evening. It will be an honor to be part of such a study.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Lee21
Date Posted: Feb 22 2012 at 11:46am
I too received the email and am excited to be part of the study.
However, I have already run into a snafu regarding who will do the blood draw. At U of M where I am being seen, my oncologist told me that the nurses and technicians are busy and there is no guarantee that I will be able to get my blood drawn there.  Also there is a charge associated with the blood draw. I will next try my primary physician (also U of M) and see if I have better luck there.



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


Posted By: BamaRachel
Date Posted: Feb 22 2012 at 6:50pm
I received my email this afternoon too.  Thanks for the info, Steve.  I know this is probably a stupid question, but her instructions, as least as far as I have read on the documents she sent, doesn't say anything about filling out these documents and sending them back -- just faxing or emailing our BRACA and path reports.  Are we supposed to fill the documents/authorizations out and go ahead and send them, or are we supposed to wait for further instructions.  I guess we can blame my ignorance on chemo brain, right?  LOL

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: TNinTN
Date Posted: Feb 22 2012 at 7:46pm
I also received a response to my email and sent copies of Susan's path report and BRCA analysis today. This afternoon I received an email saying that they received the info and that Susan would now be contacted by their genetics counselor.  My understanding is that the first step is to send ONLY the path report and BRCA results for them to review and verify that you are eligible to participate in the trial. Once they verify your eligibility, you will then be contacted by the genetics counselor who will review the consent form with you and answer any questions you may have about the family history questionnaire. I believe the initial email I received said that you would return the completed family history questionnaire with the blood sample after you are accepted into the trial. I am writing this from my recollection of what they sent me yesterday in the initial email response. Please review the attachments to the email they send you to make sure.
 
We are very excited about the opportunity to participate in this trial. Thank you, Steve, for bringing it to our attention.
 
Martin


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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: Feb 22 2012 at 9:18pm
Dear Bama Rachel,

I believe Martin’s assessment is correct.

Dear Lee,

I hope you have better luck with your primary care physician.

Dear Kirby,

glad you are joining...I posted on another thread about CPIC event March 3 at Golden Gate Club, Presidio.
Hope you can make it and if you think others might like to come please alert them. Thanks. would love to see you and anyone else who can come.

Dear Martin,

Thank you for being you..

warmly,

Steve

p.s. had lovely dinner with my daughter tonight and she said she will write Dr. Bernier tomorrow to join the study.


-------------
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: nmunoz
Date Posted: Feb 22 2012 at 9:31pm
Thanks Steve! I wrote to them yesterday and sent them by BRCA report and today they wrote back and asked for my path report and sent me the forms for review. I sent the path back so now we'll see. Such an interesting study. I love science! (I hope it moved faster in this field though...)

Best to all,

Natalia

-------------
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09


Posted By: kirby
Date Posted: Feb 22 2012 at 9:40pm
Steve,
 
I work on Saturday's so attending the event at the presidio will not work. I was quite disappointed. I hope to hear all about it after the fact. Thank you for mentioning it. I'll miss seeing you.
 
All of you are so good to have your path reports and genetic onfo on hand. I must have dumped mine at some point [ after a while one does sometimes think they need to move on !] I am going to the medical offices to get copies tomorrow.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: KatieMarie
Date Posted: Feb 26 2012 at 6:29pm
Steve, THANK YOU so much for posting this.  I emailed and got a quick response and got my path reports in.  This is pretty exciting stuff, I have a seven year old daughter, it would be nice to have more information for her.
Thank you Steve for all your gentle words for everyone.  It is like a balm to my soul to read your words of solace and encouragement.
God's blessings on you and your family,
Katie
 


-------------
IDC dx 4/24/09, Age 40
Two surgeries, three tumors: 1.4cm,4mm,2mm; Ki67=75
Stage 1, no node involvement, clean margins
BRCA 1/2 negative,
Chemo: AC dose dense then Taxol dose dense, then rads


Posted By: debB
Date Posted: Feb 26 2012 at 9:32pm
Hi Steve and everyone,

I wanted to pass on that these folks are doing a fantastic job of getting right back to people. I had a very fast response to the initial email and I spoke to the genetic counselor on Friday. They are currently waiting on some of the supplies to come in but will be Fed-Ex-ing the blood draw things as soon as possible.

You all are correct- all you need to send initially are the pathology and BRCA results. You are able to send the questionairre back with the blood sample or you could complete it and send it after you talk to the counselor but before completing the blood draw.

They indicated that they anticipate 6-8 months before getting results to people and you indicate on the paperwork if you want results shared with you or not- silly question!!

Thanks so much Steve for bringing this to our attention! Let us all hope that they are able to find more genetic clues to end this monster!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: LauraT
Date Posted: Feb 27 2012 at 7:13pm
I, too, sent in my path report and BRCA results on Friday. Received an email today from Dr. Bernier that I was accepted into the study and will hear from Ms. Mandell soon.

Steve, thank you ever so much for informing us of the study. It is exciting to be doing something that might help them unlock more clues to the mystery of breast cancer.

Warmly,
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: krisa
Date Posted: Feb 28 2012 at 12:38am
I heard today that I qualify for the study.


Posted By: SagePatientAdvocates
Date Posted: Feb 28 2012 at 6:39am
Dear all,

thanks to all for letting us know if you qualify for the study and plan on joining. And of course, there is no obligation to tell us or join but I think it is helpful to know that we are reacting as a TNBC family in an effort to better understand TNBC for those in our beloved family and their siblings/children and perhaps even parents.

I think there is a slight chance that there will be ‘actionable’ information that may help a woman with TNBC. That certainly would be a reason to join but most importantly I think your participation in the study will help advance the science so that eventually we may have more information about TNBC and some other genes that may be involved. 

That could turn out to be very important information for the future and future generations. I strongly believe that once the results of this study are published scientists will key in on the findings and try to further study the genes involved in an effort to ‘translate’ that knowledge from the lab to the clinic.

Knowledge is power in my view and so much about TNBC is currently hidden. Hopefully this research study will shed some light. In my family, as an example, it may turn out that my daughter has some other gene mutation, that will be found in this study, in addition to the BRCA mutation we have. It may turn out that I have it, too and some of her siblings as well. Hopefully, at some point, we can test for a new gene and that information may be important now or down the road. 

For those of you participating, thank you. And to those who may decide not to, my heart is with you, as well. And no explanations are necessary nor do any results need to be shared down the road. I have a feeling, though, based on our wonderful family that eventually some will share and we will all learn from each other.

I spoke to Deborah (Debris) recently and we agree that neither of us had ever seen a place like the TNBC Foundation website. There is a culture of sharing, respectfully, and a gentleness and intelligence about the support and concern found here that is palpably authentic. Despite all the difficulties this family of ours continues to endure, we are truly blessed to have each other in our lives. 

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


Posted By: 123Donna
Date Posted: Feb 28 2012 at 7:49am
Steve,

I think I probably speak for most of us in that we are so excited about this study.  Not so much in that we'll find something unique about us (but that would be nice), but more from the standpoint in furthering research for TNBC and maybe down the road have more information for targeted therapy and to help future women that will be diagnosed with this disease.  I'm 2 1/2 years past diagnosis and no longer think I'll see the magic cure or therapy anytime soon.  But it's studies like this that will unravel the mystery of TNBC and help scientists and researchers develop better treatment and therapy.  I know if I knew of other TNBC studies needing volunteers, I'd have my hand waving saying here I am.

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: ds21
Date Posted: Feb 28 2012 at 8:05am
With the recent dramatic improvements in DNA sequencing technology, the TNBC Foundation needs to be advocating for a public repository of complete tumor genome sequences.  Cost of a complete genome sequence is now less than the cost of one round of chemo.  With the complex genome rearrangements that occur in TNBC, it will help to analyze many samples and share the data to let as many groups as possible work on defining subsets and finding targets.

David


-------------
Co-survivor


Posted By: Genie
Date Posted: Feb 28 2012 at 9:11am
I will be faxing my reports today and will be anxious to hear if I will be accepted into the program. I've also encouraged my sister & niece (both TN) to apply to the study. Since there are the 3 of us family members with TN, I think it is important that we participate. I agree with Steve & Donna!

Will wait anxiously to hear something.

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: debB
Date Posted: Feb 28 2012 at 12:45pm
Steve and Donna,

What you both said is oh so very true! Sadly, we have a need to be here, but what a wonderful, supportive environment and group of people.

Anything we can all do to further the understanding- sign me up! I think in my chemo brain, I forgot to mention, they did say that if they do find anything in your sequencing that they would also test family members - siblings, parents, children- for free.

Genie, when I mentioned a colleague who had TN and also a strong family history of BC and ovarian cancer, she also mentioned a family study that they have underway.

Thanks everyone for always sharing valuable resources!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: christina1961
Date Posted: Feb 28 2012 at 1:12pm
Steve,
I am adding my great big THANK YOU for introducing us to this study.  I was accepted (even with my 5-10% ER receptors age 50 diagnosis) and have heard from the genetic counselor as well as Dr. Bernier. As Deb mentioned, I am particularly excited about the fact that if they find anything in the sequencing they would test family members for free. 


-------------
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: Genie
Date Posted: Feb 28 2012 at 5:22pm
Faxed my test results this morning and have already received confirmation of being accepted into the study. Now I'm waiting to hear from the genetic counselor.

FYI, I don't have the capability to fax from my home so had to go to the UPS Store to send the fax. What a shocker when I found out how much it was going to cost (I had 10 total pages). $3.00 for the first page and $1.50 for each additional page = $16.50 + $1.34 tax for a total of $17.84. I shouldn't complain as if this study results in finding a genetic link to TNBC, then it will be worth it!

Deb, do you know anything more about the family study you mentioned?

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: LauraT
Date Posted: Feb 28 2012 at 7:55pm
Steve and all - I agree that this study may not result immediately in a way to treat my cancer, but I am hopeful that it will unravel something that will help others down the road, and especially my own children and their children, etc. 

David - where can you get complete genome sequencing for that price? I was recently told by someone in the oncology world that the best  place was Washington University but the cost is still $20,000. I would love to get more information. 

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: cheeks
Date Posted: Feb 28 2012 at 8:01pm
Steve and all, 

Bill faxed my reports from work this morning and by lunchtime already had an email from the doctor that i had been accepted into the study. 

Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: 123Donna
Date Posted: Feb 28 2012 at 8:07pm
Laura,

I don't have an answer about the cost for sequencing, but here is the like to Washington University Genome Project in St. Louis, MO.

http://genome.wustl.edu/ - http://genome.wustl.edu/


-------------
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: debB
Date Posted: Feb 28 2012 at 9:00pm
Hi Genie,

Sorry, I don't know any further details about the family study she mentioned. I had just come from a meeting where I passed the info to a colleague so I mentioned it to the counselor, just in chatting. When she calls you, I would ask and see what she says. It might be a situation where they could even use the information for both, you never know!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: SagePatientAdvocates
Date Posted: Mar 04 2012 at 9:42am
bumped up for a wonderful young man in Europe.

Please don’t forget anyone with TNBC, anywhere, who has tested positive or negative for the BRCA mutation is welcome to participate in this free study, regardless of age. And any woman <40 years of age with non-TNBC breast cancer who has tested BRCA+ or BRCA- is eligible as well..

please write to greatar@uw.edu

The research study is free no matter where you live. You just need the ability to get a blood sample, as directed, in to the King lab quickly.

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


Posted By: 123Donna
Date Posted: Mar 08 2012 at 2:28pm
I faxed my path report and BRCA results about 2 weeks ago and received confirmation from Dr. Bernier that I qualified for the study.  The email said Jessica Mandell will be contacting me with further information.  I haven't heard anything more.  Has anyone gone beyond the first step of sending your path and BRCA results?  I thought I'd hear something by now.

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: Lee21
Date Posted: Mar 08 2012 at 2:50pm
Donna, I got my kit (for blood draw) earlier in the week. Jessica called me the 3rd week in Feb.  I had emailed Greta the day I saw Steve's post so I might have gotten in before the deluge.  Jessica said they are aiming for several thousand patients.

I am still stuck at where and how to get my blood draw.  UW does not have a charge code for other sites and UM (my oncologist) insists they need a charge code (after claiming that she is entirely supportive of my decision). I tried contacting my PCP also at UM who never bothered to respond.

My plan is to sweet talk the blood draw tech at my next cycle to see if they will just put the extra tube on. Otherwise I'll just pay whatever fee it is. 

I am very disappointed with UM.  It's upsetting that academic hospitals don't try to contribute to research for the greater good even if the research is performed at another institution.

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


Posted By: debB
Date Posted: Mar 08 2012 at 3:33pm
Hi Donna,

I sent the email immediately and had an email response right away. I talked to the counselor on 2/24 and got my blood draw kit late last week while I was in Indianapolis doing chemo. I would go ahead and send them another email to check on it. It could just be that they were inundated.

Lee- I would certainly try to sweet talk the tech doing the blood draw and see if that works. When I talked to them, they said anyone could do it, including if you had a family member who knew how to do it! Indiana Univ is just going to add the extra tube on to my blood draw before chemo in two weeks since I didn't have it in time for the last round. You are right though, very disappointing, I had no questions about it at IU. You could also maybe try a local home health agency and ask if they have someone that you could get to do it.

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: cheeks
Date Posted: Mar 08 2012 at 3:48pm
Donna, 

I sent a follow-up email with my phone number and received my kit last week. The genetic counselor who called told me we could have anyone draw the blood - such as a nurse we might know...it didn't matter to them. 

Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: 123Donna
Date Posted: Mar 08 2012 at 3:51pm
Deb and Lee,

Thanks for the info and suggestions.  I sent Dr. Bernier another email letting her know I haven't been contacted.  Hopefully, I'll hear from someone soon.

Lee, 

I'm wondering about the blood draw too and if I'll have problems.

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: 123Donna
Date Posted: Mar 08 2012 at 3:52pm
Blair,

Good suggestion.  My cousin is a nurse, so I might ask her.

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: nmunoz
Date Posted: Mar 08 2012 at 3:55pm
Hi Donna,

I also received my kit already. I got the call from the genetic counselor on 2/24 a couple of days after sending my Path and BRCA report. I would follow up by email as so far they have been good at responding to my emails.

I'm also having trouble figuring out how to get my blood drawn. My oncologist is out of town and though I love him his nurses are not the most helpful people in the world. I go to a university hospital here and I'm afraid they will give me trouble like the one Lee experienced. So, I'll have to come up with a Plan B although the genetic counselor told me to contact them if I had any issues with the blood collection part as they could be able to sort it out.

Best,

Natalia

-------------
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09


Posted By: krisa
Date Posted: Mar 08 2012 at 4:21pm
I received the blood draw kit yesterday. I went to my oncology clinic and dropped off a copy of the study and a request to have my blood drawn at the clinic next Monday or tuesday, so I can FedEx it over night.


Posted By: 123Donna
Date Posted: Mar 08 2012 at 4:25pm
I emailed Dr. Bernier and she replied immediately back apologizing that I have not been contacted.  She resent my information to Jessica and said I should be contacted shortly.  

-------------
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: MsBliss
Date Posted: Mar 08 2012 at 6:14pm
No matter any confusion, ten thousand thank you's Steve, for helping us learn about the study.  I plan on participating....

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


Posted By: Genie
Date Posted: Mar 08 2012 at 6:22pm
After being accepted into the study, I immediately sent my onc a letter and a copy of the study info asking if her office could do the blood draw for me. She called back the next day and said they would be willing to help in any way. I received my kit last Friday and had my blood drawn on Tuesday. I could have gone to LabCorp for the blood draw but felt more comfortable having it done at my onc's office.

I will be anxious to hear about the results - maybe by the end of the year. Since there are 3 with TNBC in my family, I think this research is great!




-------------
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: DianeEE
Date Posted: Mar 08 2012 at 7:17pm
Just wanted to chime in and let everyone know that I have been accepted into the study and will be talking with a genetic counselor tomorrow morning.  Looking forward to seeing the results of the study and also finding out if there is any new information that they can give me about my own genetic information.
 
Thanks, Steve, for letting us know about this study.
 
Diane


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


Posted By: kidzrn
Date Posted: Mar 08 2012 at 8:04pm
So excited you posted this Steve!! About to send off an email and will get together my BRCA and path paperwork so I can fax as soon as I hear. Is it ok if we share/post this info with others who may fit this basic criteria or do we need permission?? Thanks Christi

-------------
christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11


Posted By: BamaRachel
Date Posted: Mar 08 2012 at 8:08pm
Question for all who have already sent in their info:  Did you fax it (as the paperwork suggests), or did any of you scan and email it in?  I've got my info together; I just need to get it to them.  My onc. nurse says they are agreeable to doing the blood draw.  I just have to call and make an appointment for a "research blood draw."  LOL

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: krisa
Date Posted: Mar 08 2012 at 8:29pm
My husband scanned emailed the information.


Posted By: SagePatientAdvocates
Date Posted: Mar 08 2012 at 8:56pm
Dear everyone,

I am honestly very pleased with the King lab and their responsiveness. I have written them already thanking them, although to be clear, I do not believe any of this good service is due to me, rather a commitment to our TNBC family. I really feel, based on other studies that I am aware of, that the response from Dr. Bernier and Jessica Mandell has been extraordinary and I imagine there are some other folks in the lab helping as well. Thanks to all from all of us.

In my view, this is really an important long term study that will hopefully benefit our community and our children/siblings/cousins maybe even parents/aunts and uncles. If someone tests BRCA+ through this test and they were negative before it may have important treatment implications for that person and the knowledge is important to her family, as well. As a starter, if she e.g. is BRCA+, one of her parents is positive. And of course, many other outcomes, are possible, including not finding any gene mutation for the 20 or so breast cancer genes that they are testing for.

What is most important I feel is that if there is a finding of a mutation the participant in the study will get a call from Jessica Mandell and have the mutation explained to her. And Jessica is an outstanding Certified Genetic Counselor and is very experienced with breast cancer and knowledgeable about various gene mutations. 

And the fact that other family members, in the event of a positive finding will be tested without charge is also one of the main reasons that I am so supportive of this research study.

Again, if anyone is interested in the study please read the letter from the King Lab, in the first post on this thread and write to gretar@uw.edu 

Special thanks to all of you that have posted your experiences with the King Lab to date. I think it helps our community to know that they have been responsive. Sorry, Donna, that you had a delay and glad it is now being fixed.

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


Posted By: BamaRachel
Date Posted: Mar 08 2012 at 8:56pm
Thanks.  I'll scan and email then.  That's easier for me since I don't have a fax machine.


-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: 123Donna
Date Posted: Mar 09 2012 at 10:26am
Woohoo!  I just talked to Jessica and will be getting my blood draw kit next week.  Thanks again Steve.  I'm excited to be doing something to help TNBC research.

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: 123Donna
Date Posted: Mar 09 2012 at 10:26am
Rachel,

I scanned my reports and emailed them.


-------------
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: cheeks
Date Posted: Mar 09 2012 at 10:41am
Donna, 

Thumbs Up


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: sabinecalifornia
Date Posted: Mar 09 2012 at 11:58am

Thank you Steve for posting this. I'm also accepted in the study. I only have to find out if my oncologist will draw the blood.  I will also give my oncologist the information about the study, gives other TNBC patients the chance to enter the study.

 
Sabine


Posted By: Lee21
Date Posted: Mar 12 2012 at 3:28pm
Just want to update everyone on my blood draw saga.

I had my pre-chemo blood draw today and before the draw I asked if the tech could help me out with a research project.  She was very obliging and got the two tubes, no fuss.  Just had my husband drop them off at the FedEx office.

Grace Hopper was attributed with the phrase "it's easier to do it and say sorry afterwards than ask for permission" -- certainly true in my case.



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


Posted By: SagePatientAdvocates
Date Posted: Mar 12 2012 at 3:47pm
Congratulations, Lee!!!

somehow, I knew if anyone could do it, you could..Smile

best to your DH,

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: TNinTN
Date Posted: Mar 13 2012 at 9:50pm
I sent the FedEx package with the consent forms, the completed questionnaire, and Susan's blood samples this afternoon. We had the blood drawn at our primary care physician's office. We will now anxiously await the results.
 
Donna - since they already had the needle in Susan's arm for the trial samples, I asked the nurse to draw an extra tube of blood for a Vitamin D test. I'll post those results when we get them in the Vit D thread.
 
Steve - Thanks again for bringing this study to us.
 
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: TracyAMac
Date Posted: Mar 13 2012 at 10:06pm
Dear Steve

I will inquire if they are willing to to have participants from Canada. If yes, I am in

Thank you
Thank you
Thank you

Tracy in Toronto


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


Posted By: krisa
Date Posted: Mar 13 2012 at 10:07pm
Tomorrow I have my blood drawn at my oncology clinic. They are fitting me in their tight schedule.


Posted By: SagePatientAdvocates
Date Posted: Mar 13 2012 at 10:08pm
Dear Martin,

Sorry, but please remember, results will probably take 6-8 months, unfortunately..

If nothing new found you will get a letter from the King Lab stating that.

If a new mutation found you will get a phone call, it is my understanding, from Jessica Mandell and she will explain significance.

My admiration for you remains as does my prayers for Susan and you.

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


Posted By: SagePatientAdvocates
Date Posted: Mar 13 2012 at 10:17pm
Dear Tracy,

save you some work. I have the answer-anyone in the world can be a participant as long as criteria are met.

I believe National Health Service does the BRCA testing in Canada and that is acceptable.

How are you doing...sorry I have been a poor friend...you went through some heavy surgery and I neglected to ask how your recovery is going. You have my sincere apologies. I hope you are o.k.

hugs,

Steve

Dear krisa,

great!!!

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


Posted By: TracyAMac
Date Posted: Mar 13 2012 at 10:49pm
Thank you Steve for the information

No need to apologize my friend.  My recovery is going well - I am 3 months out of surgery (distal femural prosthetic replacement) and have about 3 more months of recovery and physio

It is a tougher physical recovery compared to my first leg surgery 31 years ago and I get tired out sooner than I realize (Confused) but it is less frightening than facing cancer and chemo.  As my father says, it is a long way from my heart! 

Thanks for posting the pic of your new grandchild - adorable!

Tracy in Toronto




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


Posted By: SagePatientAdvocates
Date Posted: Mar 13 2012 at 11:10pm
Dear Tracy,

I apologize again..yes I know what you wrote...I repeat my apology.

I admire your intelligence, your willingness to fight for what is right and your courage.

wishing you a good recovery.

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


Posted By: krisa
Date Posted: Mar 14 2012 at 5:28pm
Just got back from delivering my blood, paperwork to FedEx. This has been so easy to do. Keeping my fingers crossed that the researchers find clues/information about TNBC so we and future generations will be helped in our fight against this disease.


Posted By: krisa
Date Posted: Mar 16 2012 at 3:12pm
I received an email letting me know that my paperwork and blood samples arrived safely.


Posted By: MsBliss
Date Posted: Mar 16 2012 at 4:58pm
Wow...this team is wonderfully efficient.  They wrote back and confirmed receipt of my first steps in the paperwork process.  I am waiting to hear from them on the rest of the steps.  I like this group of researchers.  They have designed an impressive study.

Thank you again Steve for telling us about this study. 

I know this process will take some time and that is fine.  I had an"extreme BRCA-ness" to my pathology but was thoroughly negative on all tests.  I feel there is probably a "facilitator" gene which affects this concourse.  I am willing to bet that this team will solve a big part of this puzzle.




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


Posted By: SagePatientAdvocates
Date Posted: Mar 20 2012 at 7:07pm
I, unfortunately, had to add the following words to my original post...which I just did.

n.b. I am adding this today March 20th. I just found out from a wonderful young man, overseas, that he was told that unless his wife's blood is drawn and sent FedEx in the U.S. his wife can’t join the study. I confirmed what he was told, today. This is a consequence of holdups in U.S. customs since 9/11. Just want to make sure our overseas members are aware of this restriction and you have my apologies for the original misinformation. Totally unintentional but I feel especially bad about it. Again, sorry, my friend.


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


Posted By: TNBC_in_NS
Date Posted: Mar 25 2012 at 6:13pm
Steve:
Then we will find a border of the US, go there, draw the blood and send it FEDEX... Shouldn't be a problem.  I have a friend in New Brunswick that I could stay with, drive over the border, have the blood taken, then mail it up.  No worries my dear friend.  Take care, hugs, h.


-------------
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


Posted By: mags20487
Date Posted: Mar 25 2012 at 6:46pm
Is there a date deadline for us to send the paperwork and blood sample?  I have an appt with my ONC for first follow up visit and was hoping to get the blood drawn then?
 
Maggie


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


Posted By: BamaRachel
Date Posted: Mar 25 2012 at 7:58pm
I don't think so.  I was called on Friday, and they are mailing the blood draw kit now.  I told her that I had an appt. to see my onc. on April 10 and wondered if it was okay to wait till then to do the blood draw.  She said absolutely no problem. 

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: kirby
Date Posted: Mar 25 2012 at 9:34pm
I am with Kaiser. I went right into the lab, explained the situation and a blood draw was done immediately, gratis ! They even used their own needles, saying they liked them better and it was a newer system. All took less than 5 minutes and at no charge. 

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: SagePatientAdvocates
Date Posted: Apr 05 2012 at 9:25am
Dear all,

with all the activity on the board...posts soon disappear so I wanted to ‘bump’ this up and will in the future, as well,  so that ‘newbies’ have a chance to see it or folks who may have missed it the first time around. The study is still actively recruiting.

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


Posted By: kidzrn
Date Posted: Apr 05 2012 at 2:04pm
Steve,
Who do we ema again to get started?   Think I deleted info. Christi

-------------
christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11


Posted By: SagePatientAdvocates
Date Posted: Apr 05 2012 at 2:11pm
Hi Christi,

gretar@uw.edu   you can write to Dr. Greta Bernier at that email.

I believe the folks at King lab have been trying hard to give particularly good service to the folks in our community. 

good luck!!!

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


Posted By: kirby
Date Posted: Apr 06 2012 at 1:52am
The folks at King have given outstanding service.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: 123Donna
Date Posted: Apr 12 2012 at 5:03pm
Hi all,

I just had my 3 month onc visit today and asked them to draw the blood for the TNBC study.  They were more than happy to do it.  My onc was impressed with the study.  I shipped the samples off FedEx today along with my questionnaire.

Thanks again Steve.  At least it makes me feel like I'm helping in some way to further TNBC research.

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: SagePatientAdvocates
Date Posted: Apr 12 2012 at 5:53pm
Dear Donna,

You are absolutely correct; this study, hopefully, will help TNBC research.

Donna, there is also a slight chance this study will help you and possibly inform your family. It is conceivable that you have one of the 20 genes not normally tested for, and may have a rare BRCA allele or another mutation known to cause breast cancer.  

It is my understanding that you tested negative for BRCA but perhaps did not have the BART test? And there are other genes being tested in the study not normally tested for in the BART test. If you do not have any of these mutations you will receive a letter stating that and if you have a mutation/s you will get a phone call from Jessica Mandell, the King Lab's Certified Genetic Counselor to explain everything to you. If you did have a mutation, it is my understanding that it might impact any treatment plan, if G-d forbid needed in the future. Also, it is my understanding that your children would be tested for free as well if deemed necessary.

Yes, I agree, waiting 6-8 months for results is less than ideal but I think this is an important study and it is important that women will get their results. The King Lab is known for the fact that individual participants receive their results, which is quite different than some other studies.

I am very pleased with the excellent follow-up everyone (as you have reported) has received from the King lab. Dr. Mary-Claire King is one of my personal heroes.

Thank you all for participating. I feel that our community, courtesy of Drs. King, Bernier and Jessica Mandell and I am certain many others in the King Lab are part of TNBC history with this study. I know that may sound over dramatic but that is how I feel. I believe the results will be important to our community and to many individual participants and also, very importantly, will give some guidance to our loved ones. At the end of the day "knowledge is power."

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


Posted By: sabinecalifornia
Date Posted: Apr 12 2012 at 6:15pm
Hello,
 
got my port flushed today and the nurse was so nice to draw the blood for the King Lab study today. Now we are all waiting for the results.
 
Have a great evening everybody
Sabine


-------------
DX TNBC 7/11 @ age 50, Stage 2A Grade 3, 1/19, LE/AD 8/11, BRCA1/2 neg.,
4 A/C, 10 Taxol, 2 Abraxane due to allerg. react. to Taxol, fin 3/12. 33 Rads 6/12. NED CT 8/12, 10/13, 10/14


Posted By: BamaRachel
Date Posted: Apr 12 2012 at 7:22pm
I got my blood drawn on Tuesday at my follow-up visit and FedEx'd it that afternoon.  Thanks again, Steve, for letting us know of this important study.

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: 123Donna
Date Posted: Apr 12 2012 at 7:31pm
Steve,

You are so right about testing negative for BRCA gene, but possibly having another mutation.  I don't know much history on my dad's side of the family.  There were  3 sons and I'm the only biological granddaughter.  On both sides, the families immigrated from northern Europe.  This study is great that we'll get to know the results and it won't cost us anything.

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: debB
Date Posted: May 16 2012 at 4:28pm
Bumping this up again since it is so important!

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: SagePatientAdvocates
Date Posted: May 16 2012 at 4:32pm
Thanks, Deb,
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


Posted By: Katdoll
Date Posted: May 16 2012 at 5:19pm
I have been accepted as a participant in this study.  My experience is that you choose up front whether you want to be told your results or not.  The person I spoke to on the phone said they are studying whether other genetic mutations interact with the BRCA mutation to increase cancer risk.  She said that given I have had TNBC at age 44, it is highly likely I have another mutation in addition to BRCA.  I am very hopeful that this study will provide information to women in the future who find out they have the BRCA mutation and are trying to decide whether and when to have prophylactic surgeries.

-------------
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).


Posted By: SagePatientAdvocates
Date Posted: Jun 16 2012 at 4:56pm
Dear all,

spoke to several women recently about this study so just wanted to 'bump' it up.

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


Posted By: 123Donna
Date Posted: Jun 27 2012 at 11:57pm
Steve,

Have you seen this?

New genomic test available July 1 may lead to more effective cancer prevention

By  http://www.sccablog.org/author/amy-poffenbarger/ - AMY POFFENBARGER  | Published: JUNE 26, 2012

A new and low-cost method for genomic screening has identified mutations in 12 genes that predispose women to cancers of the ovary, fallopian tubes, and peritoneum. Seattle researchers who developed the test say that more patients with ovarian carcinoma carry cancer-predisposing mutations, and in more genes, than previously thought.

Swisher-th“More than one-fifth of ovarian cancers arise in women with a familial predisposition, but relying on family history alone for screening would have missed one-third of the cases,” says  http://www.sccablog.org/2012/06/new-genomic-test-available-july-1-may-lead-to-more-effective-cancer-prevention/www.seattlecca.org/doctor/elizabeth-m-swisher.cfm - Elizabeth M. Swisher, MD , senior author of a paper on these findings published in the  http://www.pnas.org/ - Proceedings of the National Academy of Sciences  last year.

A professor of obstetrics and gynecology at the University of Washington, Swisher directs the Breast and Ovarian Cancer Prevention program at Seattle Cancer Care Alliance and the UW School of Medicine. She is also an affiliate researcher at Fred Hutchinson Cancer Research Center. The results of her most recent study have implications far beyond those related to ovarian cancer.

The BROCA sequencing method, a relatively low-cost method developed by Tom Walsh, PhD and Mary-Claire King, PhD at the University of Washington, is highly sensitive and can find all classes of genetic mutations. Under the direction of Dr. Colin Pritchard, BROCA has just become available as a clinical test to identify  a broad range of breast, colon, pancreatic, ovarian, and melanoma gene mutations. Identifying who is at risk for certain cancers will allow clinicians to target prevention efforts more effectively. The BROCA test is not patented and designs for its use in genetic studies are freely available.

“Most women are not diagnosed until the cancer has advanced to the point where the chances of a cure are small,” Swisher says. “Women with early stage ovarian cancer have a better survival rate than those diagnosed with late stages, but current methods of detection are not effective.”

And this is precisely why Swisher and her research team are looking for a more complete genetic picture of ovarian and related cancers. Finding the group of genetic mutations most often associated with these cancers, and developing a simple test to detect these mutations, could lead to earlier identification of the women most prone to malignancies.
Read more about this topic in the Oct. 25, 2011  http://www.washington.edu/news/articles/linking-of-mutations-in-12-genes-to-ovarian-and-related-cancers-may-lead-to-more-effective-prevention - UW Today article  by Leila Gray.

http://www.sccablog.org/2012/06/new-genomic-test-available-july-1-may-lead-to-more-effective-cancer-prevention/ - http://www.sccablog.org/2012/06/new-genomic-test-available-july-1-may-lead-to-more-effective-cancer-prevention/





-------------
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: SagePatientAdvocates
Date Posted: Jun 28 2012 at 7:28am
Dear Donna,

Thank you sooooooooooooo much for posting this study. I had not seen it.

Here is a link to the complete study-

http://www.pnas.org/content/early/2011/10/13/1115052108.full.pdf+html - http://www.pnas.org/content/early/2011/10/13/1115052108.full.pdf+html

The focus of this study was a group of 360 women with various gynecologic cancers, mainly ovarian cancers. 

It is my understanding that the same genes that are tested for in the King Lab study, that many women here are participating in are the same genes in the BROCA study for women with various gynecologic cancers. So, if you meet the criteria for the King Lab study you will, in essence, get the BROCA results, at no charge.

As previously mentioned, if you do test positive for one of the mutations in the King Lab study you will be informed of the positive result by Jessica Mandell, an excellent Certified Genetic Counselor who has worked closely with the King Lab for many years. She will explain the significance of the results to you.

As in previous studies this study showed that the vast majority (85%) of women in the study, with gynecologic cancer, were detected in late Stages (III or IV) which is problematic. Most of the women with ovarian cancer in the study did not have a personal history of breast cancer at the time of diagnosis. 

If you do not meet the criteria for the King Lab study, I think it is important to discuss with your health care practitioner whether it is advisable for you to consider having the BROCA test. It may be helpful to print a copy of the study from the above link and give a copy to your oncologist. Also, you need to see whether your insurance will cover the cost.

I think it would also be very useful to also speak to a Certified Genetic Counselor (CGC), if possible, about the BROCA test if you do not qualify for the King Lab study.

So far, it seems that the women, who have participated in the King Lab study, who have reported back to us, have not tested positive for any of the 20 gene mutations. 

If you have tested positive (or negative), through the King Study please know that you, of course, are under no obligation to share that information, here, but after speaking to Jessica Mandell, if positive, you may wish to have a talk with your physician/s. 

Thanks again, Donna, for posting this important information for us.

Thanks to Drs. Swisher, Walsh, King and colleagues for your marvelous work on inherited ovarian, fallopian tube and peritoneal cancer. Truly transformative.

warmly,

Steve

p.s. here is title of article and abstract (link to full article above)-

Mutations in 12 genes for inherited ovarian, fallopian tube, and peritoneal carcinoma identified by massively

parallel sequencing

Tom Walsha, Silvia Casadeia, Ming K. Leea, Christopher C. Pennilb, Alex S. Norda, Anne M. Thorntona, Wendy Roeba, Kathy J. Agnewb, Sunday M. Straya, Anneka Wickramanayakeb, Barbara Norquistb, Kathryn P. Penningtonb, Rochelle L. Garciac, Mary-Claire Kinga,1, and Elizabeth M. Swishera,b,1

aDivision of Medical Genetics, Department of Medicine, bDivision of Gynecologic Oncology, Department of Obstetrics and Gynecology, and cDepartment of Pathology, University of Washington School of Medicine, Seattle, WA 98195

Contributed by Mary-Claire King, September 19, 2011 (sent for review August 25, 2011)

Inherited loss-of-function mutations in BRCA1 and BRCA2 and other tumor suppressor genes predispose to ovarian carcinomas, but the overall burden of disease due to inherited mutations is not known. Using targeted capture and massively parallel genomic sequencing, we screened for germ-line mutations in 21 tumor sup- pressor genes in genomic DNA from women with primary ovarian, peritoneal, or fallopian tube carcinoma. Subjects were consecu- tively enrolled at diagnosis and not selected for age or family history. All classes of mutations, including point mutations and large genomic deletions and insertions, were detected. Of 360 subjects, 24% carried germ-line loss-of-function mutations: 18% in BRCA1 or BRCA2 and 6% in BARD1, BRIP1, CHEK2, MRE11A, MSH6, NBN, PALB2, RAD50, RAD51C, or TP53. Six of these genes were not previously implicated in inherited ovarian carcinoma. Primary carcinomas were generally characterized by genomic loss of normal alleles of the mutant genes. Of women with inherited mutations, >30% had no family history of breast or ovarian carci- noma, and >35% were 60 y or older at diagnosis. More patients with ovarian carcinoma carry cancer-predisposing mutations and in more genes than previously appreciated. Comprehensive ge- netic testing for inherited carcinoma is warranted for all women with ovarian, peritoneal, or fallopian tube carcinoma, regardless of age or family history. Clinical genetic testing is currently done gene by gene, with each test costing thousands of dollars. In con- trast, massively parallel sequencing allows such testing for many genes simultaneously at low cost.







-------------
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: krisa
Date Posted: Jun 30 2012 at 6:15pm
Received my report...genes that were tested have no mutations. ( around 20 genes tested)


Posted By: SagePatientAdvocates
Date Posted: Jun 30 2012 at 9:41pm
Thanks for sharing Krisa..

how long was the process from the time blood was submitted?

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


Posted By: krisa
Date Posted: Jun 30 2012 at 10:31pm
Steve, i believe the end of March or the beginnng of April my blood was sent. The overall process was speedy!


Posted By: SagePatientAdvocates
Date Posted: Jul 01 2012 at 11:48am
Thanks Krisa,

The original 'guesstimate' I received from the King Lab was 6 months...glad it went more quickly.

Thanks again for letting us know.

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


Posted By: CatWhispurrer
Date Posted: Jul 01 2012 at 12:56pm
I also received my test results yesterday.  They called it the BROCA test which Donna referenced above in testing for ovarian cancer.   The test included known genes and "genes that have not yet been implicated in inherited cancer."   All gene testing was negative.  Whew!   That made me feel better since my sister also had BC 5 years ago.

-------------
Found lump 9/16/11, age 55, Diagnosed 10/27 IDC TN, LX/SNB 12/7/11, Stage 1, Grade 3, 1.8 cm, 0/3 nodes, BRCA-, DD A/C on 1/23/12, followed by DD Taxol. 3/14/14 Stage IV, 3/26/14 Paclitaxel


Posted By: bearsilu2
Date Posted: Jul 02 2012 at 12:10am
How do you get this test? My identical twin has TNBC and she was tested negative for the BRACA genes but i want to have this test when i go to my doctor on Wednesday. Do i ask her for it?

-------------
Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X


Posted By: 123Donna
Date Posted: Jul 02 2012 at 7:49am

Barbara,

I believe your sister can participate in the TNBC study-King Lab free of charge.  It's available to any woman diagnosed with TNBC.  All we had to do to participate was fill out some paperwork/questionnaire and then send off some blood samples.  They send you a blood draw kit and most of our onc offices drew the blood free of charge.  They also gave us the FED EX shipping package and labels to ship the blood once it's drawn.

For you, you can ask to have the new BROCA test that I posted above that should now be available to women at low cost as of July 1.  I believe it's the same genes tested as the TNBC study-King Lab.  Ask your doctor's office about it and see how they can get the test for you.  

The BROCA sequencing method, a relatively low-cost method developed by Tom Walsh, PhD and Mary-Claire King, PhD at the University of Washington, is highly sensitive and can find all classes of genetic mutations. Under the direction of Dr. Colin Pritchard, BROCA has just become available as a clinical test to identify  a broad range of breast, colon, pancreatic, ovarian, and melanoma gene mutations. Identifying who is at risk for certain cancers will allow clinicians to target prevention efforts more effectively. The BROCA test is not patented and designs for its use in genetic studies are freely available.

http://www.sccablog.org/2012/06/new-genomic-test-available-july-1-may-lead-to-more-effective-cancer-prevention/ - http://www.sccablog.org/2012/06/new-genomic-test-available-july-1-may-lead-to-more-effective-cancer-prevention/






-------------
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: debB
Date Posted: Jul 02 2012 at 7:04pm
Hi all,

I received my results today also! All clear. I sent mine in on March 21st, so much faster than the 6-8 months they originally quoted! I am so happy they did this for us!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: mags20487
Date Posted: Jul 02 2012 at 7:11pm
I am a little sad as i sent in all the paperwork and never heard from any one.  I must admit I have been sidetracked with personal goings on as well as getting back to life and planning recon.  Gotta send it in again I guess.
 
Maggie


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


Posted By: SagePatientAdvocates
Date Posted: Jul 02 2012 at 7:29pm
Dear Maggie,

if you are comfortable doing so please send me a PM with your name and address and I will write to the study coordinators to see what happened...

I am sending you my contact info in a PM if you would like to speak directly. 

Again, only if you would like. 

Sorry, you have not heard from them. This is the first instance I have been aware of. Everyone else has reported a prompt response and now several women have reported getting results well before we expected.

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


Posted By: kirby
Date Posted: Jul 04 2012 at 11:29am
I can't believe I almost forgot to post this ! I recieved my results from the King Study already. A letter dated June 25th, so they are working fast. They checked for more than I was ever aware of. The results were negative for everything. I had the BRCA testing in 2002, also negative, of course. I was dx at age 45 within a week of my mothers passing from ovarian cancer at age 64.
 
With my original testing, I wanted a reason for the cancer. Although I consider myself fortunate that I was negative it still left me grappling with what I have learned to call " luck of the draw." When the King study came up, I was surprised that there were so many more mutations to be tested for. Being armed with far more knowledge, I now was concerned with what if they did find something ! A roller coaster for us all.
 
Happy 4th. Negative results are a great way to celebrate independence/


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: SagePatientAdvocates
Date Posted: Jul 04 2012 at 2:53pm
Dear Kirby,

congrats!

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


Posted By: SagePatientAdvocates
Date Posted: Jul 05 2012 at 4:22pm
Dear all,

I received a lovely email from Dr. Greta Bernier, who is the point person on the King Lab Study. She reassured me that they are totally committed to our community but the study has become so popular that the response time and turnaround may be lengthened somewhat.

If anyone has sent in a request to be included in the study to Dr. Bernier at  mailto:gretar@uw.edu - gretar@uw.edu  and has not heard back within two weeks to a month please send her a reminder email.

Please be patient. I know the lab is trying their best to keep up with the demand. The good news is that the research will be more robust with increased participation.

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


Posted By: BevC
Date Posted: Jul 05 2012 at 7:15pm
Thanks Steve, I sent in a request for consideration on Monday and I heard back from her today.

Bev C


-------------
Dx 12/2011, age 48, stage 2a, 2.5 cm, grade 3, 2 nodes +, BRAC1+ A/C x4, taxotere x2 (bad reaction) abraxane x2, bmx 4/30/12, 33 rads 6/13-7/30. Hysterectomy/Recon. 10/2012.


Posted By: SagePatientAdvocates
Date Posted: Jul 05 2012 at 8:17pm
Thanks for sharing, Bev. Glad you heard so promptly.

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


Posted By: 123Donna
Date Posted: Jul 23 2012 at 9:02pm
Bumping for new members


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