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123Donna
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Location: St. Louis, MO
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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
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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ds21
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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
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Genie
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Location: San Antonio
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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
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DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm. KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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debB
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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
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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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christina1961
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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.
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2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Genie
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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
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DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm. KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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LauraT
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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
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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
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cheeks
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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
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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.
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123Donna
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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.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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debB
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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
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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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SagePatientAdvocates
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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
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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123Donna
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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
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lee21
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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
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant 1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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debB
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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
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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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cheeks
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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
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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.
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123Donna
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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
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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123Donna
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Posted: Mar 08 2012 at 3:52pm |
Blair,
Good suggestion. My cousin is a nurse, so I might ask her.
Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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nmunoz
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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
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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
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krisa
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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.
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123Donna
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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.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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