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Who has has chemo that helped slow this stuff down

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sosay View Drop Down
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    Posted: Aug 21 2012 at 12:54pm
My daughter was diagnosed with TNBC in April 2011.  She had a double mas followed by AC, Taxol, and then 30 radiation.  Finished on January 5, 2012.  In June after a month of back pain, she was told the BC was in her bones but no organs.  AT this time they did 10 more radiation and started her on Zometa.  Three weeks later her liver enzymes were up and she had a CT of abdomen.  She had mets through out her liver. CryThen was started on a clinical trial at that time.  Her liver enzymes are bouncing up and down.  She is on TAxol with Clarboplatin with panitumumab on week one and three then Taxol and carboplatin on week 2.  She then has a week off.  

  I am really interested in hearing what people have been on and it has stopped their cancer at a point or reduced theirs. Clap They told us if we can't get it stopped, she will not be here at Christmas.  Please pointg us in the right diection.  Thanks
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overwhelmed View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2012 at 1:07pm
sosay,
I have no suggestions, but I wanted to say how sorry I am.  I can't imagine all that you are going through.  Others will be here shortly to give you some suggestions.  Where does your daughter live?  Perhaps she can get to one of the major cancer centers or to one of the oncologists that specialize in TNBC.
 
Keeping you and your daughter in my thoughts and prayers.
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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sosay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sosay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2012 at 5:49pm
She is being treated at Wake in WS.  I took her to NC and she didn't meet any of their clinical trials.  Tried to get her in Cancer Centers of America and they do not accept her health insurance there and they would not talk any more to us.  I am thinking about taking her to someone else but I want the trip to be worth it.  Our funds are not that great but I can't afford to waste money either.  The DR. she saw at NC just said they would call if something came up that she met the guidelines for.  I am just afraid that if we do find something that could help we will too late.Cry She is only 38  years old.  I am trying to read everything I can to find something but I am really driving myself in the ground.  Thanks for your help.
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2012 at 9:08pm

Dear SoSay,

I cannot offer any advice about treatment either.   In talking with people at the oncology clinic where I volunteer, people sometimes mention a chemo that has stabilized or virtually put them into remission.  I met a lady today who had recurrence of breast cancer (not TN) and is taking a drug I had never heard of.  I will see her again next week and write down the name of the drug she is taking.  In the meanwhile I will ask the name of the drug and see if the chemo nurses can tell me. 
I am so sorry your daughter and your family are going through such a trying time. 
I will keep your family in my prayers.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hummingbird10 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2012 at 4:47pm
You might want to try The James Cancer Clinic at The Ohio State University.
They have a focus on Triple Negative bc patients, research, etc.
It is located in Columbus, Ohio. Don't know if that's too far for you & your daughter to go.
Not sure where you are now. If you need more info., let me know.
Best wishes,
Hummingbird10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2012 at 5:23pm
Sosay,

You said you took her to NC.  Did you see Dr. Lisa Carey or Carer Anders at UNC Chapel Hill?  Both are very knowledgeable with TNBC.  Another thought would be MD Anderson in Houston.  Dr. Ana Maria Gonzalez would be highly recommended.  



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 hummingbird10 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2012 at 6:18pm
Dear Sosay,
You mentionned having some difficulty with insurance. If you want, I can find out about
that at OSU.
Hummingbird10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hummingbird10 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2012 at 6:34pm
Sosay,
You asked about other treatments that helped. Avastin (bevacizumab) was
offered in a clinical trial, & I participated.
Hummingbird10
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valwech View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote valwech Quote  Post ReplyReply Direct Link To This Post Posted: Sep 01 2012 at 12:47pm
So sorry. I am a newbie and just learning.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 01 2012 at 2:07pm
Hello valwech,
I am so sorry you are a newbie and even need to be learning about TN cancer, but you have come to a good place to learn.  We share, vent, cry, laugh, and are a huge support group for each other. 
 
Would you feel free to share more about your situation.  Size of tumor, stage, grade, surgery, or anything else.  We are all here to help one another.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote valwech Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2012 at 10:14am
Hello. I also am sorry to have this. I am stage 1A, GR3 in all categories, Brca negative, 54 year old female. I was diagnosised in May 2012. I had a lumpectomy and was suppose to receive 6 tc chemo treatments. Unfortunately I was hospitals for septsis for 1 week and last week I was rehospitalized for severe edema and anemia. The oncologist said he can't go on with the treatments because they are killing me but I have had 4 treatments so I am in the treaputic range. Next week I met with the Radiologist I should get 6 weeks of radiation. I hope I make it throught that.
 
Lillie your treatment sounds interesting. Is it dose dense and how are you doing?
It has been a tough road.Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2012 at 2:53pm
Hello valwech,
My goodness, the chemo really knocked you for a loop, didn't it.  I again am sorry you have been having such a difficult time.  I pray the radiation goes better.  One day at a time has been my motto.....
 
Yes my treatment was dose dense.  4 treatments of adriamycian/cytoxin every other week and then 4 treatments of taxol/gemzar every other week.  I was in a clinical trial.  The trial protocol did not call for radiation since I had a mastectomy.
I am doing well.  I do have some arthritis in my knee and scoliosis in my spine, but I'm still active.  I've resolved myself to the fact that "I" will never be quite the same as I was before cancer, but it's been 6 years and I am very thankful.
 
God Bless,
Lillie
 
 


Edited by Lillie - Sep 02 2012 at 2:54pm
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote byrd Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2012 at 8:30pm
hello, im so sorry to hear that cancer center of am. wouldnt take her insurance. have you tried
MD Anderson Cancer Center in Houston, Tx. im a patient there and the Drs. are wonderful. Please call them and see if they can help your daughter.  keep me posted.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote valwech Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2012 at 1:08pm
I am glad you are doing better. I am recovering slowly and getting ready for the radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2012 at 4:43pm
Hi, Valwech,
I just want to wish you a much easier time with radiation.  For me, radiation was a piece of cake compared with chemotherapy.  Just made me feel a little tired, but that was about it.  All the best to you in the days and weeks to come!
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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