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Important TNBC study-King Lab

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MsBliss View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DianeEE Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kidzrn Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2012 at 8:29pm
My husband scanned emailed the information.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2012 at 10:41am
Donna, 

Thumbs Up
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sabinecalifornia Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post 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.
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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 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


Edited by steve - Mar 13 2012 at 10:08pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post 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
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