Go To Main TNBC Website


  New Posts New Posts RSS Feed - Important TNBC study-King Lab
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Important TNBC study-King Lab

 Post Reply Post Reply Page  <1234 11>
Author
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
ds21 View Drop Down
Groupie
Groupie
Avatar

Joined: Dec 23 2011
Location: Michigan
Status: Offline
Points: 92
Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
Genie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 30 2008
Location: San Antonio
Status: Offline
Points: 390
Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
debB View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 14 2011
Location: Central Illinoi
Status: Offline
Points: 692
Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
christina1961 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 08 2011
Status: Offline
Points: 165
Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
Genie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 30 2008
Location: San Antonio
Status: Offline
Points: 390
Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
LauraT View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 05 2010
Location: Georgia
Status: Offline
Points: 739
Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
cheeks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 584
Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post 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 @51
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 1/16
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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.

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

Back to Top
debB View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 14 2011
Location: Central Illinoi
Status: Offline
Points: 692
Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4438
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
Lee21 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 22 2011
Location: Michigan
Status: Offline
Points: 736
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
debB View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 14 2011
Location: Central Illinoi
Status: Offline
Points: 692
Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
cheeks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 584
Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post 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 @51
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 1/16
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
nmunoz View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 20 2009
Location: Miami, FL
Status: Offline
Points: 371
Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
krisa View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 21 2008
Location: Portland, OR
Status: Offline
Points: 1090
Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
 Post Reply Post Reply Page  <1234 11>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.