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New Stage IV Diagnosis - Looking for Answers

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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2014 at 7:01pm
Thanks for sharing the great news!!
d

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loveforlife Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2014 at 9:12pm
Wonderful news! Yay!!!
Dx 1/2011 2b, Gr 3, TNBC, AC/T chemo, L lumpectomy/re-excision/lymph node diss/rads. DX DCIS R Breast 4/2012 - Lumpectomy/Rads.
DX Lung Spine mets 5/2013 Carbo/Gemzar 10/2013 Xeloda 1/2014 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loveforlife Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2014 at 9:14pm
Brenda - re: androgen trial. I was tested through Sloan Kettering for the androgen receptor to try to enter a trial there. I was negative. If you look up the androgen trials, and contact the sponsor, I believe they can arrange testing without you needing to go to the actual site first. Sloan Kettering is also doing genomic testing - waiting for results of that.
Dx 1/2011 2b, Gr 3, TNBC, AC/T chemo, L lumpectomy/re-excision/lymph node diss/rads. DX DCIS R Breast 4/2012 - Lumpectomy/Rads.
DX Lung Spine mets 5/2013 Carbo/Gemzar 10/2013 Xeloda 1/2014 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2014 at 12:16pm
Thanks guys! They still haven't tested her tumor because they are looking for it (and probably forgot about it).I read an article yesterday about androgen being a factor in 18% of triple negative. A lot have a ki-67 of below 30% but it can also be a factor for higher ki-67 as well. My mom's ki-67 was 93 so I'm interested to see the results.

Hopefully it will make a difference in this fight!

Edited by MothersDaughterTNBC - Apr 30 2014 at 12:23pm
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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MothersDaughterTNBC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2014 at 12:25pm
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2014 at 11:48am
So happy for your family!   
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2014 at 6:06pm
Welp, on to the next. My mom had a scan yesterday and the lymph node grew from 9 mm to 15 mm so she is off the trial. For some reason, those lymph nodes are pretty stubborn! While we wanted it to work for a long tine, it is a blessing in disguise because the side effects were pretty bad. Also, she will be starting an anti pd-l1 trial. It is called Msb0010718c I believe. The timing was pretty awesome because this trial closes on Thursday. We're just glad to have a new direction. Luckily nothing else has changed so she has a low burden of disease which is good for this trial. She has a biopsy next week to see if she has the marker. I'm hoping this trial will be a miracle drug for all!
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2014 at 12:10am
One year ago today, my mom got the diagnosis that her breast cancer had spread to her liver. Since then, she has done AC, Doxil, and Taxol with BBI608. Her liver mets are no longer visible on scans and the remaining visible cancer is in her breast and lymph nodes. I'm having a baby in September so she will have her first grand baby. Next week, she will start a new trial that we hope will knock the rest of the cancer out! This past year has been stressful/sad/scary but we're thankful that my mom is still here and doing well. I pray I will be back this time next year (and lots and lots of years after that) with new milestones that she has experienced!

Last year today was a devastating day but this year today we celebrate.
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2014 at 1:57am
Hi,

I just wanted to know if the breast and lymph node tumors are triple negative.  The reason they are stubborn could very well be that they are not?!

Hugs,

Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2014 at 7:52am
Congrats on the new grandbaby and your mother's scan.  Do they plan on removing the breast tumor and nodes or just try more chemo to see if it shrinks?  So glad you will be celebrating this milestone!

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 Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2014 at 9:08am



Dear Mothers Daughter,   What a wonderful report!!!!! I am so glad for you Mother. Thank You for posting this which I am sure will bring hope to so many who find themselves where you Mother was last year.

                           Continued Blessings to you, your baby and your Mom...Take care. Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2014 at 12:03am
Thanks everyone! My whole family is pretty excited. Especially my mom!

Brenda,
I've thought the same about the lymph node and breast possibly not being tnbc but she had a biopsy in the beginning that came back tnbc. This new trial required a new biopsy but she hasn't received the results yet. I guess we shall see.

Donna,
They haven't mentioned doing surgery yet. We've asked about it but they don't seem like they want to do that. I'm not sure why. She is starting an anti-pd-l1 trial next week. She has to have a Ct scan and bone scan for baseline. She's a little nervous about the bone scan since she's never had one before. Now any little pain makes her think she has bone mets as well. The doctor said in this one trial, they've already seen 3 people with tnbc have complete responses. It is a phase 1 trial so that is pretty exciting.

Annie,
Thanks! I know how we felt last year so I hope this report will give others hope as well. The beginning was really hard for all of us. My mom dealt with pretty bad depression. Depression medicine, anxiety medicine, time, and just having a treatment plan has made a huge difference. It is definitely different than before but there is much more joy now than in the beginning.
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2014 at 5:46pm
Biopsy came back and my mom has the jak2, mcl? myc, arid1a, r1276, and rb1lossexons5-27. I don't know anything about them but I do know that the first 3 have clinical trials targeting them. If the current trial doesn't work, we can try one that targets these mutations.

Anybody know anything about it?

Also, bone scan and ct scan shows that the only cancer visible on the scan is the breasts and lymph nodes. The lymph node did get slightly bigger on her wash out but everything else stayed the same.

She started the clinical trial today and so far so good. Here's to hoping and praying it is the miracle we all want and need!





Edited by MothersDaughterTNBC - Jul 28 2014 at 7:39pm
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2014 at 11:09pm
A little update:
My mom has been on the clinical trial for 6 weeks. She just had a scan to see if it is working. Good news is the liver is still showing no evidence of disease. The breast lumps appear to be a little smaller but they said CT scans are not good at looking at the breast. Bad news: the lymph nodes have grown 5-7mm since the last scan. One of the lymph nodes is very visible so we knew that there was going to be some progression. She will continue on with the trial for another 6 weeks since this trial takes a while to show response. We're hoping the next scan will start showing good results! This trial has been very tolerable so if it works, that would be awesome!
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2014 at 7:57am
Thanks for the update.  You are right, it may take some time show a response.  Hope the next scan gives her good results.  Is this the clinical trial?

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 MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2014 at 9:47pm
Donna,
This is the clinical trial:
http://clinicaltrials.gov/ct2/show/NCT01772004?term=MSB0010718C&rank=1

It is similar to the other one but made by a different company. It has had pretty good results and some people are showing responses after 11 and 12 weeks so hopefully it will show a delayed response for my mom.
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 1:44am
Since the last scan, the lymph node continued to grow and started oozing so they decided to take it out. They biopsied it and it is still triple negative. They also found that there were dead cancer cells in there so they think the treatment is starting to work. She has another scan on Friday so hopefully it hasn't spread and maybe it is working now!

Also, my mom became a grandma to her first grandchild on September 23rd. She made it to Colorado (from South Carolina) just 15 minutes before he was born which was pretty cool for her.

I will be back to let you know how the scan goes.

Shannon
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 1:55am
Congratulations, Shannon!  Are you a new aunt or a new mom?
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MothersDaughterTNBC Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 5:26am
Thanks! I'm a new mom!
Mom's Diagnosis:
07/2013 - TNBC with lymph nodes and liver involvement
07/2013 - Adriamycin & Cytoxan
09/2013 - Doxil

https://www.facebook.com/PrayForJanice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 7:56am
Shannon,

Congrats on the new baby and so glad your mom made it for the birth!

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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