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Important TNBC study-King Lab

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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




Edited by steve - Mar 13 2012 at 11:11pm
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 krisa Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Mar 16 2012 at 3:12pm
I received an email letting me know that my paperwork and blood samples arrived safely.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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



Edited by steve - Mar 25 2012 at 6:16pm
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 TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mags20487 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kidzrn Quote  Post ReplyReply Direct Link To This Post 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, then Avastin every 3 wks until 2012...NED since 2/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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


Edited by steve - Apr 05 2012 at 2:43pm
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 kirby Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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


Edited by steve - Apr 12 2012 at 8:56pm
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 sabinecalifornia Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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