Triple Negative-How are you doing?

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Rena
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Re:Triple Negative-How are you doing? - Friday, December 03, 2010 9:49 AM
Sazbro, that's great news about your test! Hydeskate, welcome! It is so great that you've been NED for more than a year! I wish you continued good health!! To all my triple negative friends, I hope that the season brings you happiness and that the new year will bring all good things. 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!

Gail Srebnik
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Re:Triple Negative-How are you doing? - Friday, December 03, 2010 9:39 PM
Hi there triples! It's nice to read and share in good news from triples. Nothing has changed as far as my condition and I have a mammogram next week. Probably a check-in and blood work a few weeks later for the CLL. I want to wish you all a healthy, happy and loving year ahead and a joyous holiday season.

dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

tamtam66
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RE: Triple Negative-How are you doing? - Saturday, December 04, 2010 1:14 PM
Hi I'm new to this, all of this actually.. I had a mastectomy on my left breast Aug, 12.  I'm triple negative, I was stage 1 grade 3.  I had chemo ac for 3 months and taxol now for the next 3 months once a week.  All these post are so helpful.  I will be starting my taxol on Dec. 9th, can anyone tell me some of your side effects that you had with taxol?? Thanks so much.... Just reading some of these post and I haven't read a whole bunch, but everyone is so remarkable and so strong. I have found that you have to be strong, I do however get a little down sometime..
I have heard that triple negative has a greater chance of coming back. 
I am going back in January to see my Dr. about the next stage of my reconstructive surger.  I have the expander now.  I did the donor tissue, so far so good.  I don't know if my onocolgist will let me have the next stage of my surgery while taking the taxol.
 
If anyone can give me pointers about the taxol or any other words of encouragement it's greatly appreciated.
 
 

Nuzzys Nana
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RE: Triple Negative-How are you doing? - Saturday, December 04, 2010 4:22 PM
I was diagnosed over 5 years ago - Grade 3 (as are most "triples") Stage 1.
 
I know it is not easy but try not to dwell on statistics because they are just "numbers" and have absolutely no bearing on you.
 
I send you my best wishes and let us know how you are doing as time passes.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

PJ Meyer
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Re:Triple Negative-How are you doing? - Tuesday, December 07, 2010 11:21 AM
Hi Sadie

I was Dx with TNBC in 2007. I saw my Oncologist a week ago, normal 3 mo check-up with normal blood draw. Wed evening I got a call back, cancer marker high. I am having a PET and 2 CTs (w aand w/o contrast so actually 4 CTS) today - 3 hours from now.

You can see what I had in my signature, but it hardly touches my story. In  a nutshell, so to say:

Sitting alone at home, Friday night, I had a sharp pain on the left side of my chest. I feared it was my heart and reached up only to discovered a golfball size lump right below my bra band. I t had come out of nowhere and was in an area that I felt every time i took a shower, dressed etc, as it was right under the band, under the left breast. You feel that area daily just by adjusting your bra when getting dressed.

I called my PCP on MOnday, soon as her office opened, in fact I think I called too early adn left a message. SHe had me come right in, usually it takes days or weeks to get in to see her. She order an ER Mammo and Ultrasound, and gave me the name of a surgeon , before I had the tests, as it had to be removed one way or another.

I had an excisional biopsy, lympedctomy, chemo, mastecdectomy, and more chemo.The double chemo was because  3 of my doctors feared I might also have IBC due to an orange rash on my breast.

I developed a reaction to my Nuelasta, got sicker with it following each dose, finally on treatment 4 I wound up in the ER and was unable to take anything after my last chemo. (had 5)

Its been a nightmare, (as it is with all of us)
After my 8+ hour mastectomy, removed breasts, removed and relocated my pacemaker form left to right side so it would be out of the way for RADS, and placement of the expanders, I had a number of surgeries. Within weeks I developed infections in both breasts (areas) and had to have the left side opened cleaned and closed, then 2 weeks later - the other side. (WHy he wouldnt do both at the same time I have no idea, maybe to obtain more money - TWO surgeries instead of one.

I went thru chemo at teh same time as the expansion. Part of the way thru, the left expander slipped under my ARM, but this jerk continued to expand me. I was in so much pain I was unable to put my arm down to the side or sleep for weeks, finally he performed the exchange surgery  Again proved wat kind of a doctor/surgery he is - he put int the wrong implants - silicone not saline, incompatable with pacemakers. I had to see another PS and have those removed and replaced along with surgery to remove all the skin under my arm from his streaching the wrong part of my body  The new PS used some of that skin to make my nipples are areolas. It took two surgeries to correct the mess that the first PS did to me, and I still need one more!

BTW, did I mention that during my mastectomy my left elbow was broken and my right rotator cuff torn? Yep more surgeries. Had the elbow repaired but been putting off the RC surgery, as I do not want to go under the knife again. Will wait until I have my last recon surgery. (The pacemaker wires have moved into my neck and need to be removed, so as long as they are doing that, and the recon, they can fix the shoulder.) Guess I forgot to mention the PM leads moving. I never had the RADS, my Onc changed his mind after the surgery. Great now i have a ton of problems with the wires that would not be in the area they are if not for relocating it.

I had some issue with Lymphadema, but it's been mainly in my abdomen, "truncal" lymphadema.

I developed sever back pain over 1/2 a year ago and have undergone a number of procedures (mini-surgeries) to burn the nerve endings to stop the pain. The last one, 7-8 weeks ago, did nothing...the pain only got worse. Now we are all fearing the cancer has spread to that area. I pray it is only there and that radiation will kill it. However my last CT/PET showed "activity" in my lower spine and right hip, lesions in a few organs and brain, also that I have had a few mini-strokes.

I have had a number or growths removed since the DX, one about an inch from the original cancer, and one in my mouth, right over my "eye" tooth.

And that's my story  - in a nutshell

Better stop typing, limited activity before PETs, and mine is in 3 hours.
Jean

Jean
lumpectomy Jun '07 Stage3 Grade9; DX: IDC, TNBC, BRCA 2, 
Chemo TC Jul-Sep '07, Mast/Rec Sep 26, '07.
Chemo TC - Nov-Dec 07, Infections- 2 surgeries, Dec/Jan 08
Exchange Mar '08, 2nd Exchange Oct 3 '08 
CT/PET-lesions kidney, Thryoid, mastoid, eye, activity in spine/hip
Additional tumors since original Dx in chest, esophagus, colon, chest, mouth. 
CarePage:JeansCancerfight

Rena
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Re:Triple Negative-How are you doing? - Wednesday, December 08, 2010 10:18 AM
PJ, I just read your story and don't even know what to say. No platitudes--it just is wrong that one person has to go through so much. I, too, had horrible experiences with plastic surgeons and multiple surgeries to repair the mess, and can commiserate on that. But there is no way I can really understand everything else you're going through. I just want to say that I care and that I wish I could kick the #$% out of cancer on your behalf. I hope that the news from the PET is much better than you expect. Sending all my very best wishes, 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!

daynanorman
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RE: Triple Negative-How are you doing? - Thursday, December 16, 2010 8:44 PM
I am pretty new to this TNBC situation also.  I was diagnosed in October 2010.  Since then, I have had a double mastectomy, breast expanders placed and am having my second chemo treatment on Dec 21.  I am scheduled for 6 treatments of Taxotere/Cytoxan and no radiation.  I haven't had any problems from the chemo except that my hair is beginning to thin.  Not too happy about that but that is just part of the recovery.  Can't wait until I can say 20+ year survivor on my signature also.  You gals are awesome!
Dayna Norman

Triple Negative Breast Ca (Right Breast)
Stage IIA
Double Mastectomy/Expanders placed
Taxotere/Cytoxan 6 Treatments
Negative Nodes
(Diagnosed 10/19/2010)

MZT
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RE: Triple Negative-How are you doing? - Friday, December 17, 2010 2:31 PM
Hello
My mom was diagnosed with TNBC in 9/2010.  She had a lumpectomy for a 1cm tumor (Stage 1B; Grade 3).  Now she is getting Taxotere/Cytoxan for 4 treatments.  I've been talking with some women who have gotten 6 treatments.  No positive nodes and BRCA negative. What makes a doctor choose 4 vs 6?  I am going to ask my my mom's doctor next week about it.  If anyone has any insight, please let me know!
Thanks
Michele
My mom - 62 y/o - DX 9/2010; lumpectomy, Stage 1B, Grade 3, 1cm tumor, neg nodes; started TC once every 3 weeks x 4 doses then radiation; BRCA negative

mary l
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RE: Triple Negative-How are you doing? - Saturday, December 18, 2010 9:27 AM
Hello Jean.  I  just read your story and I have to agree with Rena.  How can so many things go wrong.  I am so sorry you have had to go through all of this.  That Dr. needs to be kicked out of medicine.  Unbelievable!!!! Hope your MRI gives you good results.  Best Wishes.   Mary L
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

Gail Srebnik
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RE: Triple Negative-How are you doing? - Tuesday, December 28, 2010 7:28 PM
Hi fabulous triples...Jean ..your story is one that brings me to tears but I am glad you are here and able to move on. I am doing okay though I have more than a few stresses in my life which is why I am not posting much. If anyone needs to ask me anything about my bc 'trip' please private message me and I'll get right back to you (if you don't find me here). May you all sail into 2011 in peace and health. Gail
dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Sadie Rose
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RE: Triple Negative-How are you doing? - Saturday, January 01, 2011 12:10 AM
Hello Everyone,

Just wanted to drop in and wish you all a Happy New Year!  We made to another one!  It is my son's birthday is today and I feel very lucky to be spending the day with him.  I am looking forward to 2011.

Have a restful weekend.
Sadie

Nuzzys Nana
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RE: Triple Negative-How are you doing? - Saturday, January 01, 2011 11:35 AM
 
 
I also wish everyone a very Happy and Healthy New Year. In two weeks I will celebrate a "special" birthday (75th) although at my age, every birthday is special. Hell, every day is special.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

RP66
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RE: Triple Negative-How are you doing? - Wednesday, January 05, 2011 8:50 AM
Nuzzy, I had to sign in to wish you a very Happy Birthday!!!  I hope you have a wonderful 75th year!!!
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

mary l
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RE: Triple Negative-How are you doing? - Friday, January 07, 2011 11:52 AM
Nuzzy, Have a wonderful 75th Birthday.  I love to read your posts.  Best wishes.  Mary L
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, January 07, 2011 8:06 PM
Nuzzy's Nana,

Just had to stop by and wish you a very happy birthday.  Hope you are feeling well and have fun plans for your special day!

Warmly,
Sadie

Rena
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RE: Triple Negative-How are you doing? - Friday, January 07, 2011 10:44 PM
Happy birthday, Nuzzy's Nana! Have a wonderful celebration!yippee!
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!

ElaineQW
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RE: Triple Negative-How are you doing? - Saturday, January 08, 2011 6:59 AM
Nuzzy's Nana!! I don't often check this forum, but I'm so glad I did or I would have missed your 75th birthday!!

HAPPY BIRTHDAY AND MANY, MANY, MORE -- 


Hug,
Elaine
 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 






Sharon
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RE: Triple Negative-How are you doing? - Saturday, January 08, 2011 7:44 AM
Happy 75th Nuzzy's Nana,  enjoy your Special Day:)
Non Hodgkins Lymphoma Extra Nodal (Stomach + BM)
Stage IV C. Survivor x 5 years
T/ment: 8 cycles Rituxan CVP x 8 + Rads. x 30
Friends affected by Breast Cancer


Nuzzys Nana
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RE: Triple Negative-How are you doing? - Saturday, January 08, 2011 2:07 PM
I want to thank all of you lovely "well wishers". I am so tickled to be alive. My kids are hosting a brunch for me. It started out to be a rather small gathering and now we have 17 people coming. One of my bros is even flying in from Texas with his daughter. Instead of gifts I asked that people give to Komen for the Cure or a charity of their choice.
 
We decided on a brunch so that my lady friends do not have to "drive at night". LOL. We're a bunch who have seen eachother through some really tough times and we're still here to tell about it. And there's lots to tell after raising children alone. The laughs just keep on coming.
 
You know my motto: I'm not going anywhere anytime soon. There are still people around that I have not pissed off yet!
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

artlab
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RE: Triple Negative-How are you doing? - Saturday, January 29, 2011 5:50 PM
NN...I haven't been on in some time...wishing you a belated happy birthday!  I appreciate your posts...especially back when I was first diagnosed.  It is so wonderful that you continue to reach out to all of us!
Karen
New Jersey
DX 8/09 at age 51 
Tumor: 2 cm/Grade 3 
Lumpectomy/sentinal lymph node biopsy: 9/10/09
Clean margins/lymph nodes clear
IDC
Triple Negative
Stage 1
Chemo A/C started 10/15/09 4 rounds--DONE!! 
Taxol 12 rounds--DONE!!!
Radiation 3/2410-mid-May--DONE!! 

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