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    Posted: May 21 2012 at 11:39pm
Beth P,
       You did it. You are done with your chemo. Hoping you are feeling better each day.
       Sending caring and positive thoughts for your surgery.....think you posted elsewhere
            surgery will be on June 14.
                               Grateful for today..........Judy

Confused,
      Hope things are OK with your Mom.
      With caring thoughts to you, your Mom and your family
                                Grateful for today..........Judy

Lawana,
       Think you might be past half way in your chemo plan of TAC x6.
        Just wanted to send lots of good thoughts your way.
                             Grateful for today............Judy

Mandy,
      From another thread, looks like you started DD AC on April 5.
      Thus, you may have had your last AC.....or soon to have your last AC.
      In any case, hope you start to feel better quickly.
      From your initial post, you mentioned that you planned to have your surgery in June.......
             so sending caring and positive thoughts for that.
                                   Grateful for today..............Judy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote confused Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2012 at 2:07pm
hello all
I want to thank everyone who has the strength to share their fight, it does give others the strength they may need. Our mom is tolerating the TAC regimen so far. She is fighting for us, unfortunatley the side effect of "chemo brain" may do us in. They are tweaking things but for someone who had some cognitive decline prior to this it is hitting hard. We are not sure how much is stress related, we just went through round #2, she is in good spirits but unsure of why she needs chemo. It's very distressing to continue to explain the diagnosis, prognosis, treatment over & over again. If things get worse decisions would have to be made. Does anyone have any experience similar? We were aware of this side effect prior to and it was a factor in the decision to fight. Our mom does not want to survive she wants to live.
More confused than ever!
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2012 at 12:25am
Beth P,
Just realized when I re-read your post that you are still on chemo.
Initially I thought you had finished chemo and did not include you on my 3/21/12
                     Judy


Confused,
      Hope your Mom is doing OK on the chemo.
                     Judy

Katdoll,
     Belated Congratulations on your recent 2 year anniversary.
                   Judy


Lawana, Beth and Mandy and all,

You will probably see on some other topic forums on the website........
there are many survivors........and just in case you have not seen those threads yet, will re-post what
some of them say:

It is very important to know that there are many survivors of triple negative breast cancer.
It is important to know that many newly diagnosed and those with recurrences
post on this site.
BUT there are many survivors who do not post.....they are so busy living their lives.
In fact, there are a few forum topics about survivors:
http://forum.tnbcfoundation.org/survivors-needed_topic8221.html
http://forum.tnbcfoundation.org/any-long-term-survivors-out-there_topic9365.html
http://forum.tnbcfoundation.org/any-10-year-survivors-out-there_topic9398.html?KW=survivors

Realize it was mentioned already, just to repeat having a good Vitamin D level is something one
can do and seems a good thing to follow-up on.
There is a thread with great Vit D info.   see especially p. 26
Many with TNBC had low Vit D levels at diagnosis.
So if you know your Vit D level, great. If not, you may want to consider to get one done and then
if low, make a plan with your MD to raise it.
On the forum and in the ariticles,, it has been emphasized it it Vitamin D3     (not Vitamin D2)
that is important.
http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html

Hope all your pre and post chemo meds are working really well.....or in the process of
being adjusted/tweaked.

With caring and positive thoughts,

Grateful for today................Judy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote lawana901 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2012 at 8:23am
Thanks guys for all your help and support.  Katdoll-thank you svo much for the encouraging story.  I was hoping that was the case and people had just moved on with their lives.  Im trying to keep a positive attitude and know that their is a reason I found out how I did and am gonna take what Im supposed to from this and use it in my long, fulfilling life.  Im a pediatric oncology nurse and see kids beat odds every day.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mlshaw Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 9:08pm
Turtle,
I am being treated in Fort Collins, CO at Front Range Cancer Speciallists. Everyone there has been amazing. My tumor is invasive mammary, ductal type, grade 3. I don't know if EGFR was done. I was tested for BRCA 1 & 2 sequencing and BRCA 1 5 site rearrangement panel, all negative. I just emailed to get into the genetic study from King Lab. I don't really know why my chemo is a little more aggressive than some, but it is interesting to see the different treatments.

Lee,
I have no idea about radiation yet. I haven't met with anyone, but am assuming that the radiation will be based on what my pathology looks like after my mastectomy. Wish I could help with what is the best, but I have no idea!! Good luck with yours, keep us posted on what the RT says. 

Mandy
Wife, mother, physician age 35
Dx Jan 2012 stage 2b
TNBC 2 primary tumors 4 & 1 cm BRCA neg, sentinel nodes neg
Neo-adjuvant chemo 12 taxol, 4 carboplatin, 4 DD AC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 2:12pm
Lee,

These docs are certainly frustrating. 

One question I've been asking myself lately is why the chemotherapy response for BRCA2+ ovarian cancer is so good (and how does this compare to breast), and if there are lessons from the ovarian cancer setting that can be applied to treatment decisions for breast cancer patients (specifically with respect to the platinum compounds). See below (note this paper is referring to ovarian cancer):

"Moreover, BRCA2 mutations were associated with a significantly higher primary chemotherapy sensitivity rate (100 percent for BRCA2-mutated vs. 82 percent and 80 percent for BRCA wild-type and BRCA1-mutated cases, respectively)


http://www.sciencedaily.com/releases/2011/10/111011163047.htm


http://jama.ama-assn.org/content/306/14/1557.full


DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 1:45pm
Hi Lawana, Confused, Mandy (mishaw) and Katdoll,

Sending lots of caring and positive thoughts to each of you.

As you find your way around this site and it's resources and forums,
here's the links for 2 threads already mentioned:

King lab gene study (as noted by Lee above):
http://forum.tnbcfoundation.org/important-tnbc-studyking-lab_topic9642.html

Thread with great articles on TNBC and breast cancer:
And we all are so grateful that Lee started this particular thread. Thanks again, Lee.
http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440.html


There is so much info on the TNBC Foundation site.
One never knows what a new member has seen or not seen.
I prefer to give the info and say disregard if you are already aware.

Thread with great Vit D info.   see esp. p. 26
Many with TNBC had low Vit D levels at diagnosis.
So if you know your Vit D level, great. If not, you may want to consider to get one done and then
if low, make a plan with your MD to raise it.
On the forum and in the ariticles,, it has been emphasized it it Vitamin D3     (not Vitamin D2)
that is important.
http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html

Some abbreviations used on forums are listed on the following link.
Note:   You may see "NED"........No Evidence Of Disease.
http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html

Lawana, Confused, Mandy (mishaw) and Katdoll: Sounds like you are all aware of BRCA testing.
Since this thread is in the Welcome New Members forum, there may be other new members who
would be interested in the following thread....thus, reason for including.
http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html

Just a FYI.
This is what I have seen on the various forums.
Some members post their questions on an existing thread............
like Vit D questions on the Vit D thread.
Some members have started a new thread and tend to ask their questions on the thread they
started......thus, having their questions on one thread.
To start a new topic:
       Go to the forum you wish to post on....ex: welcome new members, TNBC Talk etc
       At top of specific forum page: click on "New Topic +"
       Complete screen with     "create a new topic".
             When finished, hit   "post new topic'    at bottom of screen.
There's really no incorrect place to post. It's just that sometimes one may get more responses from
     starting a new thread when one is new to the forums or have a new topic.
     Sometimes when one is adding information to an existing topic, it may be more helpful to post
     there.    Again, the most important thing is to " just post" when you have questions or have
     something you would like to share.

And finally, one last link:
Sharing what I thought were excellent videos from Dr. Massie, Psychiatrist at Sloane-Kettering on
Psychosocial support for breast cancer:
    How to ask for help.                      How to talk to friends.
    How to cope with depression.     How to deal with spouse's emotions.
To me, it seems she has really listened to what breast cancer patients are saying and experiencing.
http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html
(Note: it takes several seconds for video to load......the video is there!)

With caring and positive thoughts to all,

Grateful for today..........Judy

Edited by Grateful for today - Mar 21 2012 at 2:52pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 1:25pm
Turtle -- we all fill in for each other.  I've been at this (meaning researching TNBC) for longer. 

I didn't get very far with my onc about my subtype.  First I asked if I have the basal subtype: she said she is absolutely certain I have the basal form.  Then I asked if my tumor should get stained for EGFR and cytokeratin 5/6 (which I believe is in reasonably common use).  She then tells me personalized medicine hasn't made it to clinical medicine. I then asked if my tumor has features of BRCAness (i.e. abnormalities in the homologous recombination pathway not necessarily mutations in BRCA1/2)  and she says I definitely don't.  Finally I asked her about platinum drugs.  She said at our next clinic visit she will give me a history lesson on the use of Pt drugs (which she never did).  Meantime she says I need to stop reading about breast cancer and move on.  So it hasn't been a particularly useful interaction especially since she never explained all these proclamations.

I have seen statements in reviews that platinum drugs may be very useful for BRCA1/2 mutation carriers (Hudis had a podcast and referenced a DFCI study) but offhand I don't remember specific trials -- maybe Denise has this info at her fingertips.

Lee
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 turtle Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 12:37pm
you're right Lee, didnt do my homework, and deleted the ? about the oncodx. I just wondered if they were suspecting a "basal' type of TN in Mandy's case, which I understand (but correct if I'm wrong) may respond to platinum therapy. my path report showed moderate EGFR levels (by IHC), which would be consistent with a basal type, and i had asked my onc about platinum therapy for me, but she was on the fence (and then i ended up with a mastectomy first, so no opportunity to use this as a neoadjuvant therapy).

Edited by turtle - Mar 21 2012 at 12:40pm
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 12:28pm
Oncotype Dx I was told was used only for ER+ and 1-3 node+.
MammaPrint is a 70-gene assay and may be more appropriate for us. However, only level II evidence available and requires frozen samples or stablized mRNA (i.e. not from most tumor specimens that were collected which are formalin fixed paraffin embedded)
I go this information from the following paper (unfortuantely not OPEN ACCESS)
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2961539-0/fulltext

Mandy you should also be aware there is a research study ongoing in the King lab (look for the thread in TNBC topics) that many of us are participating in where they will do complete genome sequencing of BRCA1/2 as well as 20 other breast cancer risk genes. Look to that thread for inclusion criteria: I am sure you qualify though. It' free of charge -- you just need 2 tubes of blood to FedEx to them.
The way I understand the commercial (Myriad) assay (standard and BART) is that they don't detect all of the mutations.  Steve correct me if I am wrong.

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 turtle Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 12:07pm
Mandy,

I too am curious about your neoadjuvant regimen, and wonder where you are being treated, and who is your onc if you care to share this? Also, do have the info from the path report as to tumor grade, receptor status (including EGFR?). When you say you were tested for BRCA mutations, was the standard test for the common mutations done, or a more detailed, whole-gene sequence performed? I ask these questions because I'm wondering if your treatment decision was based solely on your age at presentation and tumor size, or whether there was additional info?

I think it's great you are being treated aggressively and with a platinum compound!


Edited by turtle - Mar 21 2012 at 12:21pm
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mlshaw Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 11:45am
Steve,
 
I was tested and am negative. 
Mandy
Wife, mother, physician age 35
Dx Jan 2012 stage 2b
TNBC 2 primary tumors 4 & 1 cm BRCA neg, sentinel nodes neg
Neo-adjuvant chemo 12 taxol, 4 carboplatin, 4 DD AC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 9:23am
Mandy

I'm glad to hear you are doing well (or as well as one can be given the circumstances) -- keep us posted with your progress: we all try to learn from each other and as you say, there are so many variations on a theme.

I'm interested in the study you mentioned -- is it published?

Another issue that is of interest to many of us is the role of radiation in TNBC, specifically for those who elected to have mastectomies.  And which type of radiation: whole breast, IMRT, hypofractionated....Do you know which kind you will be getting?  I haven't crossed that bridge but will be needing to see a RT person in the coming weeks.

We're all desperately trying to do the right thing for ourselves right from the get-go but given that TNBC is such a grab bag of different subtypes, it's hard to know why the same regimen works for one person and not for another when both may have the same staging characteristics.

Lee
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 mlshaw Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 9:09am
Lee, 
My oncologist is being very aggressive because of my age, 2 primary tumors, my genetic testing all came back normal....so she wants to be aggressive up front. I have been on weekly taxol with carboplatin every 3rd week. I will get my 11th dose of taxol tomorrow, then 1 more week of taxol and then dose dense AC every other week for 4 weeks. So far my counts are hanging in there, a little anemia is all. It is interesting to see what everyone is on. I imagine there are multiple ways to skin this stupid breast cancer cat!!! Thanks for the reply, it's nice to talk with people like me. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 7:16am
Hi Mandy
Thank you for sharing your story with us.
Your neoadjuvant treatment plan seems to be the most aggressive I have come across.  What was your oncologist's rationale for putting you on the 4 big guns at once?  Are you doing dose dense AC or is that q3 week cycle?
I am on cycle 4 of AC of my DD AC-T plan and this cycle I am pretty much wiped out presumably because of anemia.
Lee
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 Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 11:33pm
Lawana, I have a story similar to yours.  I was tested for BRCA1 in spring 2009 after a cousin was diagnosed with TN IDC.  Then I had an MRI, which showed a mass which was TN IDC.  I had bilateral mastectomy and AC/T.  My sister went down the exact same path a few months after I did.
 
Please don't despair, and as much as you can try not to let anxiety about recurrence get the best of you.  (I know that is easier said than done.)  Someone commented a few days ago that people who feel "cured" are less likely to post here because they are off living their lives.  It is true.  I rarely post, but I want to tell you about some positive outcomes, because maybe it'll help you manage your fears.  Yesterday was my two-year "cancerversary," two years since I finished treatment.  According to my oncologist it is now very unlikely I will ever have a recurrence.  My aunt is cancer free 15 years after her TN diagnosis.  My cousin is cancer free three years following her TN diagnosis.  My sister is cancer free two years since TN diagnosis.  A very good friend of mine (not BRCA+) is cancer free for eight years following a TN diagnosis.  We are all healthy, strong, active, and definitely living our lives!
 
 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 10:39pm
Dear Mandy,

welcome to our TNBC family and sorry you have need to be here.

Have you seen a Certified Genetic Counselor regarding getting tested for the BRCA mutation?

good luck with your treatment..

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 mlshaw Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 10:21pm
Lawana
I am also fairly newly diagnosed in Jan. Stage 2b, 2 primary tumors 4 & 1 cm, sentinel nodes (6) negative.  I am doing neoadjuvent chemo (12taxol, 4carboplatin, 4 AC over 16 doses) I am on dose 11 this week. Done with carbo, it sucks. 2 taxol and 4 AC to go. So far things are going well. I have 2 kids, 7 & 9. I am a family practice physician and have been able to continue with a full time practice, some days are easier than others. I have liked the neoadjuvent chemo. My tumorrs have both been undetectable by exam since week 5. I am planning bilateral mastectomies in june, then radiation and then implants. My carboplatin is not FDA approved for breast cancer but my oncologist just finished a study and it looked good so I am on that and insurance is paying for some of it!! I want to see my kids grow up too...this kinda sucks!!!
Mandy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 7:11pm
Dear confused,

Not sure why genetic profiling not done..

If they feel not informative for your mom (which, again I don’t understand) wouldn’t it possibly be informative for you?

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 Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 7:03pm
Dear Confused,
I am so happy your mom has chosen to fight.  I pray the very best outcome possible for her.  You are a very special daughter and she is lucky to have you as an advocate.
 
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 - 11/2015-9 yrs NED
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