Triple Negative-How are you doing?

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Sadie Rose
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Triple Negative-How are you doing? - Monday, November 12, 2007 10:44 PM
Triple Negative Folks,
 
I just wanted to communicate with other women who have been diagnosed with triple negative breast cancer.  If you are triple negative, I wonder if you would share what your treatment has been and how far out you are from treatment.  I would love to hear your stories.
 
I am triple negative and three years out from treatment.  I had surgery to remove several nodes and then did chemotherapy.  I had 3 rounds of AC and there was no change in my tumor size.  My oncologist changed my cocktail to T and Carboplatin. My tumor did reduce in size and I had a lumpectomy.  Next I did 33 radiation rounds with boost at the end.  So far I am doing well.  All of my scans come back good.
 
Sadie

Alison Irwin
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RE: Triple Negative-How are you doing? - Tuesday, November 13, 2007 1:41 PM
Hi Sadie,
 
Another triple neg survivor here!  I am a 15 month survivor!  I had a left mastectomy, 4 AC chemos, 1 Taxol, 3 Taxotere and 36 rads.  I'm doing great so far.  I did have 1 lymph node involved.
 
Right now I'm just enjoying life and trying to put my cancer worries behind me.  I know my life will never be the same, but I am determined to make it as normal as possible.  I will be having reconstructive surgery sometime later this winter.
 
Congrats on reaching the 3 year mark.  My onc. told me that triple neg's have a higher recurrence rate the first 2-3 years.  Once you make it past that your rate of recurrence goes down significantly.  Finally some good new for us!
 
Take care,
Alison
Alison, 45. Woodland, WA.
DX 08/14/06, Left Mast, Nodes13-/1+, 4-AC/1-Taxol/3-Taxotere, Rads, BRCA neg.,Tram flap. Medullary carcinoma, triple negative.

Karan
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RE: Triple Negative-How are you doing? - Tuesday, November 13, 2007 5:12 PM
Hi, I just found out last week that I ws triple negative also.  I am not a survivor, yet.....just one in training.  I will be having a bilateral mast. with tram flap reconstruction on 11/30.  I am Braca 2 positive, with invsive breast cancer, found with an MRI and then biopsy.   so decided to do both becuase of the recurrance rate with the gene.  I have been searching the message board for people with triple negative and would love any advice or information you might have.  It is so supportive to see how far along others are in this journey.  Valerie

Texas Granny
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RE: Triple Negative-How are you doing? - Tuesday, November 13, 2007 5:48 PM
Diagnosed 2-15-07
3-7-07 single, simple mastectomy
1 cm. 4 nodes negative
Stage 1
grade 3 triple negative
4 ac finished 6-20-07
 
I haven't quite made 5 months since the end of treatment, but I feel good and am doing everything that I was doing before diagnosis and treatment.  - Still working 40 + hours a week - I am 66. I haven't been able to decide if triple negative is good or bad.
 
Texas Granny
<message edited by Texas Granny on Tuesday, November 13, 2007 5:53 PM>

Rena
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RE: Triple Negative-How are you doing? - Sunday, November 18, 2007 10:10 AM
Hi Sadie. I'm a 21-year triple negative survivor. My treatment consisted of mastectomy, chemo and radiation. It was such a long time ago that I don't think they use the same kind of chemo anymore (it was CMF). My cancer was not found early--it had spread to 22 lymph nodes, but they say that triple negatives respond well to chemo, and it seems to have worked for me. Good luck, Sadie. Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, November 23, 2007 9:32 PM
oo
<message edited by Sadie on Friday, November 23, 2007 9:38 PM>

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, November 23, 2007 10:27 PM
Hi Alison'
It was so nice to hear from you.  It sounds like you are on the road to rcovery.  I'm glad to hear life is getting back to normal for you.  It does get easier and easier to feel like you can attend to typical daily events and not have to be so focused on cancer.  Every time a screening test comes back okay it is easier to belief you have beat cancer this time. 
 
Thankyou for sharing!
Sadie

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, November 23, 2007 10:30 PM
Hi Valerie,
I just got back to reading this message board.  I noticed you have your surgery coming up soon.  I will hold you in my thoughts and am sending you positive vibes~~~~~~~~~.
 
I hope you get to enjoy the week and can pamper yourself.
Warmly,
Sadie

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, November 23, 2007 10:34 PM
Rena,
Your a 21 year survivor! Wow!!!  Did you doctors identify your cancer as triple negative then?  It is so encouraging to hear that you have done so well.   What advice would you give to those of us only a few years out from treatment?
 
Thank you so much for sharing!
Sadie

Rena
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RE: Triple Negative-How are you doing? - Friday, November 23, 2007 10:54 PM
Hi Sadie. Back then, they could tell that I was ER/PR negative, but there was no HER test. Much later, I asked my oncologist if he thought I was triple negative, and he said yes because I was diagnosed young and eventually tested positive for the BRCA2 genetic mutation. He said that these are consistent with triple negative. As for advice, I think the best I can give is this: keep working on your mental/emotional health so that you can deal with stress, and try to enjoy your life and do the things that make you happy. As much as possible, surround yourself with loving people. There's no magic bullet, unfortunately, but I think that being happy helps promote healing. I wish you all the best, Sadie. Love, Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

BeeCee
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 1:39 AM
Hi Sadie congrats on your 3 years! And Rena, wow, 21 years is awesome! I'm in the club with Alison and Texas Granny since it's been almost 16 months since my dx. My history is in my signature below and I'm doing fine now. My mammo in Aug was clear and I got a good checkup at onc in Oct. I see my rad onc in another week and will have another mammo in Feb, so everything is looking good.
 
Karan, good luck in your tx. Will keep you in my prayers as you begin your journey.
 
Alison, I hope you see this. Could you tell me why you had 1 Taxol, then switched to Taxotere? I have a friend that had her first Taxol a week ago and she had so much pain that she says she won't take it anymore. I had pain with Taxotere, but not like she has had. I told her I thought she needs to see about switching over to Taxotere. We have the same onc. I think I've heard of others changing because of severe side effects. Is this why you switched?
 
Blessings to all, Bonnie.
Age: 64
Dx: 8/07/06
IDC, Stage 1 Grade 3, ER-PR-Her2/Neu-
Lumpectomy of L breast x 2, 8 nodes neg.
4 x AC, 4 x Taxotere
Bone scan in Feb 07 (neg)
33 rads
Tx finished 5/07/07
Mammo 8/07 and 2/08 - clear

Sadie Rose
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 8:31 AM
Good Mornig Rena,
 
I had missed your first post and just read it.  I agree with you totally about good mental health and a positive outlook.  I now have my office in a clinic with a focus on complimentary medicine.  I am surrounded by people who eat well, take care of their health and are generally happy people. There is a positive energy when I walk into our building.
 
I also use humor, curiousity and tenacious advocacy to keep me healthy.
 
I have a lot I want to see and do.  My daughter is pregnant with twins girls !  How fun is that!!!
 
I just appreciate every extra moment I have.  Thank you so much for sharing.
 
Warmly,
Sadie
 
 

Rena
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 11:45 AM
Sadie, Bonnie, Alison, Valerie, and Granny (did I miss anyone?)--you are all such a positive group of women! So often we hear that triple negative is so scary and yet it's been pretty much proven that we respond so well to chemo. I'm a walking advertisement for that--next year, my years of survival will match the number of positive lymph nodes I had! It seems that finally there is more research being conducted on our type of bc. I really have hopes for breakthroughs in the next few years. I'm sending each of you a big hug and an extra one for you, Valerie. I'm BRCA-2 positive also, and knowing that has given me some options for taking care of myself. Good luck with your surgery. Please let us know how it goes. Love, Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Patti Schimpf
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 12:05 PM
Sadie,

I, too, am in this elite group of women! I actually didn't even know what triple negative meant until well into my chemo treatment. (4 AC/4 Taxol) I think if I had known, I might have been frightened; however, it really wouldn't have mattered...I know I've beaten the beast and will remain cancer-free the rest of my life! I love reading Rena's story...I know one day I'll add the 20+ year survivor title to my name!

Loving family, supportive friends, daily prayer with God, keeping everything in perspective and humor certainly has helped me get through this past year.

Patti
Diagnosed Oct. 2006
Lumpectomy Nov. 20, 2006
Triple Negative
Chemo Started Dec. 2006 - Finished March 2007
Radiation Started April 2007
Got early Radiation release May 29, 2007 - DONE!!!!!

carepage: PrayersforPatti
Big D, Texas

Coco
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 3:34 PM
Sadie, 
I am a triple negative and start chemo Tuesday.  I will receive 4 cycles of Taxotere and Cytoxan every three weeks.  After the chemo I'll have radiation for 6 or 7 weeks.  I plan to be back at the gym by Friday.  Wish me luck. 
Age 67
DX 10/8/07
10/29/07 LUMPECTOMY RT BREAST INVASIVE DUCTAL CARCINOMA
LYMPH NODES NEG Stage 1 Grade 3
Triple negative
4 cycles of Taxotere and Cytoxan Finished 1/29/08
35 Rads finished 4/11/08
Malvern, Pa

Karan
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 6:20 PM
Hello everyone...this  has been something to look forward to, hoping and finding an answer to this posting.  I do not know much about triple negative, in fact I kind of found out by afterthought that this is what I am when I went back to my original breast cancer specialist/genetisict and she read an updated pathology report to me.  I had to go home and try to look it up.  Why is it frightening?  The  Dr. told me there was nothing in the "arsenal" to fight this with so they would likely have to use "the big gun" chemo on me.  But I have had so much other info  and terminology  thrown at me that I did not understand so  I tried to give myself  a crash course in BC and  so  I think this slipped by me until recently.  MY history is I had an aunt die five years ago in her mid 80's of ovarian cancer, like most families we don't go back too far with info, so her daughters got tested and they were positive, my mother, her sister, no problems,  in her 80's,  got tested she was positive  and had a hysterectomy.  I was positive ( Braca2) but my two sisters were not.  One of my daughters has been tested, she is neg.  So grand daughter will be too.  I had oophorectomy in August and then after mamo in April that was fine had MRI in Sept. that came back with the big C. after a sonogram/biopsy.  So on Friday I will   have them off since recurrence is 80%.  I am 60.  I plan on tram flap since I have some tummy fat they can use and I am not comfy with foreign implants.  I have been detached from all this ( somewhat)  and very clinical in making decisions,giving blood, etc. but am beginning to feel like I will not return from the hospital or will have some complications like staph infection...blah, blah , blah.  Boy is my mind running wild.  Anyway, can someone tell my why triple negataive complicates things. I  like to be informed, it is a control issue, I guess.  I admire all of  you for your positive attitudes and forthright responses.  V al.

Rena
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RE: Triple Negative-How are you doing? - Sunday, November 25, 2007 6:55 PM
Hi Val. You've got your hands full, but boy am I impressed with how you've taken care of business! All the fears about not leaving the hospital and staph,etc. are natural pre-surgery jitters. I had major surgery eight weeks ago (not for cancer), and even though I've had more surgeries than I care to remember, it felt like the first time all over again. That's just the nature of undergoing surgery. So, don't worry about the fact that you're worried--it's normal.

OK, I'm no medical expert, but here is what I know about triple negative: only a small percentage of bc's are triple negative, so the lions' share of the research has been on hormone-positive cancers. If your tumor's growth is fueled by hormones, then in addition to chemo, there are drugs, such as Tamoxifen, that suppress hormone production and, thus, give additional protection against the cancer. For us TNs, there is no such treatment beyond chemo. The good news for us, though, is that the evidence seems to show that TN tumors respond especially well to chemo and that once we are five years out, our likelihood of recurrence is lower than that among hormone-positive women. That's all I know.

I wish you all the best, Val.

Love,
Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

LynnFarr
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RE: Triple Negative-How are you doing? - Monday, November 26, 2007 6:19 AM
Comforting to see there are more of us out there. I'm feeling fine. Thank you!
<message edited by LynnFarr on Monday, November 26, 2007 6:21 AM>
Dx:2/06
Triple negative, lumpectomy 1.9cm mass, clear margins, 0 nodes, Stage 1
4 rounds A/C
33 rad
2/07 mammo clear

LynnFarr
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RE: Triple Negative-How are you doing? - Monday, November 26, 2007 6:21 AM
You are definitely a survivor already! Wishing you best of luck with your surgeries.
Dx:2/06
Triple negative, lumpectomy 1.9cm mass, clear margins, 0 nodes, Stage 1
4 rounds A/C
33 rad
2/07 mammo clear

Sadie Rose
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RE: Triple Negative-How are you doing? - Monday, November 26, 2007 7:05 PM
 

Hi Karen,
I am also triple negative. I am three years out from treatment and a little over four years out from diagnosis. The other posters are giving you good information. Triple negative cancers are very aggressive. They have a tendency of returning in the first 2-3 years after diagnosis. They respond well to chemotherapy. There is another support site you might like to visit. Type in: tnbc foundation. It is a site just for those with triple negative breast cancer. Another site, breastcancer.org has a thread for triple negatives. Hope that helps
Sadie

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