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Are there women who survive TNB

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Topic: Are there women who survive TNB
Posted By: lindarenee
Subject: Are there women who survive TNB
Date Posted: Jul 17 2009 at 2:44pm
Are there a lot of women out there who actually do survive triple negative breast cancer?  It seems to me as though most women relapse from this disease and die...even the women who do not have the triple negative breast cancer lose their lives as well.  I have been on line trying to find articles about women who have survived this cancer for many years and all i read about are women who are relapsing and dying from it.  At first i was really positive and optimistic that i was going to remain cancer free while i was going through treatment.  But now i strongly feel that i am going to die if not soon than in the next few years.  Although i have been in remission for 19 months now, i don't see myself surving this.  I just give up all hope.



Replies:
Posted By: trip2
Date Posted: Jul 17 2009 at 2:55pm
Hi Lindarenee,
 
I really wish you wouldn't give up hope.
 
Only recently have they tagged TNBC and began to look at it seriously so there isn't alot of information but that is changing all the time.  More studies, more discussion, trials, it is getting better and will continue to do so.
 
So many women once they complete their treatments or even before will probably go on with their lives and not be in an online discussion so I am not sure how you would be able to know at this point.
 
We are fortunate and have some longer time survivors who post occasionally to remind us this can be done.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Nancy
Date Posted: Jul 17 2009 at 4:52pm
Dear Lindarenee,
 
Lori has felt the same way as you, and she knew many women dx with bc, and only knows of one who has survived, and that woman is a friend of mine and Lori's. Peggy is her name and she was dx with TNBC also, but never knew she had TNBC until Lori was dx. Peggy is now 7 years out from dx. I also know one woman who was dx with bc+ over 25 years ago, and she is doing well. She was also dx with cancer of the uterus, but came through that as well.
 
Here on the site we have Kirby, dx in February of 2001, Rena Henderson, dx in 1986, with 22 positive nodes, went through a year of chemo weekly, and then there is Flutist, 18 years from dx, also went through chemo for 1.5 years and weekly. Rena does post occasionally and I hear from Flutist by pm or email. They are doing well.
 
It must be very difficult to stay positive when there are no long term survivor stories, and especially with TNBC. The phrase was coined I think about 5-6 years ago? I think someone told me when I joined the site 2 years ago for Lori, that it was 3 years then.
 
Lori is 2 years out from dx, and is doing everything in her power to stay healthy, but there is no guarantee that this beast will not return, and she knows that.
 
Until a cure or a cause is found women will continue to be dx and will die. As Connie has said so many times...give all the money to the best and brightest researchers/scientists, and perhaps they will find the cure.
 
More drugs don't seem to have been the answer, as they are not curing, only giving more time, which of course is what everyone wants, but they are not providing quality of life. Don't give up hope Linda...Lori hasn't...and I haven't either.
 
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: dmwolf
Date Posted: Jul 17 2009 at 6:32pm
YES, lots and lots!  At least 60-something% of women survive it, and the number is much higher for lymph-negative, and even higher for stage I. Don't feel hopeless, sweetie, though of course we all go 'there' sometimes.  You are doing really well. 
Love,
Denise (about to go to the airport to take off for our Bali vacation....yipee!)


-------------
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.


Posted By: mefowler
Date Posted: Jul 18 2009 at 1:18am
Dear lindarenee,
 
Overall about 80% of women with TNBC are alive at five years after diagnosis.  And the best part is that if you survive five years, the risk of recurrence is about 0% after that.  Even though the five-year survival of hormone-sensitive is higher, they continue to have a risk of recurrence even twenty years out.  I hope you don't get discouraged.  I think that what happens is that as women get further out from diagnosis, they get busy and don't post on this site as often as when they are first diagnosed and under treatment, although they cruise by occasionally and I bet they read more than they post.  It is the natural change in focus that occurs when they no longer have as many daily reminders about their breast cancer.  So don't give up hope!  I certainly have not.
 
Maire


-------------
53 yo, dx'd 11/08 at 51, 2.9 cm IDC, node-neg, neoadj chemotx with Taxotere/carboplatin q3wks x 6, lumpectomy 4/09, path showed pCR, margin reexcision 5/09, rad'n 6-8/09, intermittent Tarceva, dc'd


Posted By: SapphireSkies
Date Posted: Jul 18 2009 at 4:24am
Hi Lindarenee,
 
I understand how you're feeling, as it was only a couple months ago I was asking the same things when I found out I was Triple Negative.
I did the same thing as you - searched online to find stories of hope and survival...and I found NONE. Every story I found online was negative about TNBC...they all said TNBC is basically a death sentence, just a matter of time. I got myself in a major emotional funk because of this, and I posted the same questions you have here, in another BC message board (Young Survival). When I did this, a very kind member took it upon herself to find an old thread with MANY people who posted success stories with TNBC...many 5 or more years out from their original diagnosis! This member also took it upon herself to request a "shout-out" to all the current TNBC members who are still doing well today, and many responded with good news.
 
What this member did for me, and all the ones who responded, was give me hope, and showed me that there are MANY people who are beating this.
 
I also realized that this was a "look at the glass half empty or half full" situation, and from that point on I chose to look at it half full.
 
Someone else told me something very wise as well, which I'll share with you... NONE OF US COME WITH AN EXPIRATION DATE.
 
 
(((hugs)))
 
Christine Smile
 
 


-------------


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.


Posted By: rena
Date Posted: Jul 18 2009 at 6:50am
Lindarenee, I found the first three years the hardest in terms of feeling hopeful. It really does take some time to start to feel confident about the future. I encourage you to talk to a counselor or, better yet, find a really good women's therapy group. It can be a breast cancer group or not. I joined a group (not a cancer group) when I was about a year and a half out from diagnosis because I was living, breathing cancer--thinking about it when I woke up in the morning and thinking about it when I went to bed at night. Finding a place to talk about the feelings and get support and feedback helped me more than I can say.

Although I was diagnosed before there was a test for HER, my oncologist is quite sure that I was TN. That was almost 23 years ago. I had extensive lymph node involvement. Women DO beat TN all the time. Please don't give up hope. Don't sit alone and feel hopeless. Talking about the feelings is so important.

Wishing you the best,
Rena

-------------
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)


Posted By: trip2
Date Posted: Jul 18 2009 at 7:17am
Christine,
 
You look so pretty in your picture!


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: shoyle
Date Posted: Jul 18 2009 at 10:03am
I am a woman who has survived triple negative breast cancer. I was diagnosed in 2005, so this is my fourth year cancer free. It has not been easy  after receiving an all clear regarding remission of cancer in my breast, pre cancerous polyps were detected in my colon and as a result I underwent a partial colectomy, followed by a hernia a repair.  never the less I am blessed and well. Please do not give up hope, everyone's circumstances are different, and each cancer is different even though we have a commonality. Meet each day with pride in yourself and love of life.


Posted By: GRANNY
Date Posted: Jul 18 2009 at 10:16am
We all need to keep our spirts up and only listen to positive comments.  A negative out look can effect healing.  I know there are times anyone can get overwhelmed.  I am a RN and the first thing I did  was get on line and look at all the negative web sites got overwhelmed and felt totally doomed. A dear friend of mine Ginny who is also a nurse redirected me and found this web site.  Some of the info on web sites cannot be trusted it is not accurate.  Please trust in the Lords healing powers pick your self up by the boot straps and FIGHT LIKE A GIRL!!!!!!!!!  Cancer is not the work of the Lord but the devil do not let him win.  Eat when you do not feel like eating excercise when you do not feel like it.  Pray for healing and accept the fact you are healed by the strips of Jesus.  Love to All Lets Keep Fighting


Posted By: vdq7015
Date Posted: Jul 18 2009 at 12:44pm
Hi Lindarenee
Wow I am a long term suvivor.  In nov it will be 6 years since my dx. For the first 2 years I worried constantly. I even held off on reconstrction until I was 2 years out. Keep being positive. You might benifit from Happy pills to take the edge off. I don't need them any more but they sure help the first 3 years. I was so worried I would not see my boys graduate from High school. Well 1 down 1 to go!!
 
xoxo"s
vdq7015


-------------
tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006


Posted By: SapphireSkies
Date Posted: Jul 18 2009 at 1:17pm
Originally posted by trip2 trip2 wrote:

Christine,
 
You look so pretty in your picture!
 
You are a sweetheart, Pam. Thank you! Embarrassed


-------------


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.


Posted By: kirby
Date Posted: Jul 18 2009 at 9:20pm
Lindarenee,
 
I guess this is where I am supposed to come in. Read my stats. I know without a doubt I was TN even though they didn't come up with the term until maybe 3 years ago. In addition, my tx wasn't what so many of you are having today for TN. I was age 44 at dx. Given 1/2 the amount of chemo that is given today, this was before dose dense and I had only a lumpectomy.
 
There is lots of hope out there. Good luck to you. Cancer will always be lurking in the back of ones mind but it does eventually reced to the further recesses.
 
Kirby


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Raine
Date Posted: Jul 18 2009 at 10:51pm
Lindarenee

I was Dx in1997 and although not talked about then my path results show that I was TN back then they only talked about ER & PR +/-. but when I checked my path report it does show they had tested for Her2 and that was Neg as well.

As several have said TN has only come to the fore in recent years so there are many around who prob are TN but don't as Her2 was not tested for and unles they get a recurrance will never know.

If I hadn't had a new primary in the other breast in 2006, I would not be here on these boards as I had got on with my life, putting BC out of my thoughts until my annual checks came up.

In the beginning I worried that I would never see my boys grow ,but I have (My only experience of Cancer prior to my Dx  was 6mth after Dx you are Dead).  I and many other like me are living proof that is not the story today.  I have seen my boys grow up, marry and give me grandchildren.

One day this will be you so please don't give up.  Live every day.

Raine


-------------
Raine
Dx Jan 1997 Medullary,6/14 nodes Lumpectomy, Rads & 6xAC
Dx July 2006 IDC, 29/34 nodes, Mastectomy, 4xFEC and 6xTaxol, Rads


Posted By: SagePatientAdvocates
Date Posted: Jul 19 2009 at 4:01am
Dear Lindarenee,

I think a positive outlook is a very important part of your recovery plan.

Last night my youngest daughter was married and I spent some beautiful time dancing with her older sister who was diagnosed with TNBC five years ago, next month.

I believe she will live many, many decades...not just years...

She has never 'given up' and I truly believe that has helped...

To be honest, sad and depressed at times, but she has always remained a fighter.

My prayers are with you and I hope you can, somehow, with time, feel more optimistic about your outcome. As written above, by others, there is evidence that you can be a long-term survivor.

all the best,

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


Posted By: vickyann
Date Posted: Jul 19 2009 at 7:07am
No hope??????
Please know we have all felt hopeless.  I always say...it is amazing what you can do when you do not have a choice...
IF it is true we will all die with tnbc then our other choice to live as long as we can...
What can we do?????
Some ppl here rely on  a strict diet, i am going thru a trail study sponsored by Columbia in Houston at  Baylor also md anderson is conducting this triple negative prevention. Will IT will work??? I don't know...But I am trying this  six month study..when it is over i will find something else to try...Maybe i will live long enough that  they find a drug to prevent recurrance. If not maybe i will prevent my daughters form getting this...
Don't give up you can't, if we all do.... then we all let each other done. It is our fighting and complaining that is making them research tnbc..
Do we have a deal?????
Texas calling you out girl:-o 
 


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: sydonashae
Date Posted: Jul 19 2009 at 7:45pm
It is entirely up to us, the survivors of this disease, no matter how long, to bring awareness and positivity to the newly diagnosed.  Yes, it feels hopeless and helpless.  Those worries and anxieties do pass with time.  There are stages you will go through during treatment, but know you will soon be yourself again.  It is scary and frightening.  I refuse to read anything negative about our disease anymore.  I am here now and that is all that matters.  I was 33 at dx with two small children.  They remind me daily that I cannot allow this disease to take me away.  I refuse to let it.  I have good days and bad days - as we all do.  Here are some things I have learned lately to cope with my anxiety: diet (low fat, low sugar), vigorous exercise at least 6 days a week, a morning shake comprised of green powder, ground flaxseeds, blueberries, probiotic and whey protein, supplements: fish oil, quality multi vitamins, D3, resverterol, indole 3 carbinol, mushroom extract and tumeric.  Green tea is important and should constitute half of your daily intake of fluids.  I learned a lot over the last few months from natural doctors and from reading.  There are some things we can control such as keeping our bodies as healthy as possible, but there are also things we cannot control - there is where hope enters the picture.  All we can do is hope and keep a positive attitude and keep our bodies healthy.  I hope this helps.  I don't post a lot, but do visit often and read the posts.  I just passed my one year mark on June 13th and doing awesome!  You can do it too!!!  No matter how long we are here, every minute is a blessing, even for those without cancer.  Everyone should treasure each and every day regardless of what kind of battle you are fighting.  Keep fighting!!! xoxo Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: sydonashae
Date Posted: Jul 19 2009 at 8:41pm
Christine - how did you post your picture?  Everything I have tried gives me an error message!!  Susa

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: sydonashae
Date Posted: Jul 19 2009 at 8:42pm
Christine - how did you post your picture?  Everything I have tried gives me an error message!!  Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: vickyann
Date Posted: Jul 20 2009 at 3:35am
I know so many people who drink shakes....
My family ate at home so often while I was going thru chemo. Three drugs  made me sick, now i feel like my husband lives to eat, and I need to eat to live.....I am ready to try it..How does it taste? Can you give the measurements?
 
Any other shake girls out there??????
Thanks,


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: vickyann
Date Posted: Jul 20 2009 at 3:39am
Susan,
I have not scheduled my breast reconstruction. That is my next step, I am thinking about going to see the doctor the end of august. Will you let me/us know how that goes. Do you have an expander?
Did you have both breast removed at the same time?


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: sberger
Date Posted: Jul 20 2009 at 7:01am
There was a big study that breascancer.org used for survial rates for TNBC and it was 77%.  That was using all stages and grades, everyone.  This study was a little old.  They may not have a targeted drug yet but the care has changed a lot for tnbc.  I doubt there are many onc's that are not treating this very aggressively, and therefore the survival rates if they were done today would be even higher.
 
Susan


-------------
DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.


Posted By: SagePatientAdvocates
Date Posted: Jul 20 2009 at 7:08am
Dear Susan (sydonashae)-

what a lovely, important message...

and second Susan (sberger) thanks for study info..do you have specific details?

best wishes to all,

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


Posted By: sberger
Date Posted: Jul 20 2009 at 7:22am
http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior.jsp - http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior.jsp
I think that fact that they grouped in all stages also up the survial rates for early breast cancer. 
 
Dr. Susan Love also writes very optimistically about tnbc.  Also check "Our Blog" to the right of this artical for very good updates.
http://www.dslrf.org/breastcancer/content.asp?L2=6&L3=5&SID=381 - http://www.dslrf.org/breastcancer/content.asp?L2=6&L3=5&SID=381


-------------
DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.


Posted By: sberger
Date Posted: Jul 20 2009 at 7:25am
Sorry the blog is to the left of the TNBC description.

-------------
DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.


Posted By: Tabatha00
Date Posted: Jul 20 2009 at 8:43am
You have every right to feel exactly how you are feeling but my prayer for you is that you make peace with what is going on even though it's the crappiest thing!!!!!   
 
I was diagnosed with breast cancer on May 22 (1 month shy of my 38th birthday).   I had an excisional biopsy where they removed the whole tumor cause I wanted that bugger OUT.   I decided I wanted to go to a large breast health clinic for treatment and so I underwent ct scans, bone scans, mammo's, ultrasounds and all my scans came back clear EXCEPT there was this "thing" on the lower pole of my kidney the Dr's wanted checked out first.   I met with the Urologist, he told me it was probably cancer (WHAT????) and so I had a kidney biopsy so they could determine if it was related to the breast cancer.    The results........grade 1 renal cell carcinoma (kidney cancer) but the SILVER LINING.......it is NOT related to the breast cancer.
 
Does it suck to have 2 types of cancer at 1 time?  Ohhhhhhhh well you bet it does.   I didn't sign up for this!!!!!  So, on July 30 I will be having surgery to remove the tumor laproscopically or if it's attached to my ureter they will remove my whole kidney.   (CRAPVILLE).    Of course my prayer is they remove it laproscopically (he won't know until he gets in there) because then I'll be able to FINALLY after 2 months be able to start chemo 2 weeks from surgery.  
 
If they have to remove my entire kidney I'm sure the gameplan will change (AGAIN) but I have to realize that I am EXACTLY where I am supposed to be RIGHT THIS VERY MINUTE because this is where God wants me.   I sure do wish I know what his plan was for me but it's not for me to know.   I have to walk in faith that things will work out for me in the end.   I just have to lean on the Lord, my family, my friends to get me through.   God has put messengers in my path EVERY step of the way and that's how I KNOW things will be o.k.  
 
As a matter of fact I have a Caring Bridge page that sets out those messengers and what they have said to me along the way (people I don't even know)  http://www.caringbridge.org/visit/tabathaallen - www.caringbridge.org/visit/tabathaallen     
 
All we can do is do what our Dr's tell us to do and pray.   I don't want kidney cancer and breast cancer..........most especially not at the SAME time.    I have 2 kids at home, I have a wonderful husband......I have a GREAT life and I REFUSE, REFUSE I tell you to let cancer stand in the way of that.
 
I'm sure my attitude might change a little once I start chemo cause I'm sure that won't be pleasant but I CAN DO IT........I WILL DO IT.   I will do it because that is God's plan for me and that's what I have to do in order to see my kids grow up.   Bring it baby!!!!!
 
I'll keep you in my prayers.   Have yourself a pity party every now again because we all do.  It's the fear of the unknown.   The "what ifs"..........FOCUS on the important things because we can't predict what the future will be like.........we aren't promised tomorrow.........we are here TODAY.........take it one day at a time.   Baby steps as my husband has had to remind me SEVERAL times. 
 
You can do this.   We ALL can do this!!!!
 
Tabatha


Posted By: Pam M
Date Posted: Jul 20 2009 at 10:58am
There is a great article that really gave me a lot of hope at breastcancer.org. It's an article dated July 2008: Triple Negative Breast Cancer. I love the part about "living to a ripe old age."


Posted By: Tabatha00
Date Posted: Jul 20 2009 at 11:22am
Do you have the link to the article?


Posted By: dconnolly
Date Posted: Jul 20 2009 at 3:34pm
Ok
 Just when I am having my pity party, which lets face it we all have  and need at times,because we are scared and tired and don't quiet know what life has in store for us. I read these posts and think oh my lord, I think I am dealing with a mess. Well it just goes to show we can all do it. I am thinking and praying for for you. You will beat this. Big%20smile
  
Dx 5/09 IDC STAGE 2/GRADE 3
lumpectomy 6/09 margins clear 2 of 5 nodes +
3/4 rounds ac done with 4 round taxol and radiation to go
 
 


Posted By: SagePatientAdvocates
Date Posted: Jul 20 2009 at 4:59pm
Dear Tabatha and all,

this may be the article?

http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/ - http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/

from the above link-

"George Sledge, M.D.: A good place to start is what's a common misconception in that triple-negative breast cancer has a truly awful prognosis. But in fact, that's not really the truth. Factors such as size of tumor and lymph node status are still very important. For a Stage I breast cancer patient, even with a triple-negative breast cancer, most patients live to a ripe old age. In addition, if the patient received adjuvant chemotherapy, there are significant reductions in the risk of recurrence and death due to breast cancer. So I would not consider this a matter of gloom and doom."

Pam M....does the above look familiar?

all the best,

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


Posted By: shoyle
Date Posted: Jul 20 2009 at 5:16pm
While I was in chemo treatment, I made sherbert and gingerale floats, they were very soothing, it did not matter if I used organge, raspberry or rainbow sherbert they tasted delicious, I also made smoothies, with fruit juices and frozen yogart.
 
Sharon
Stage 2
Non-lymphnodes
chemo, lumpectomy, radiation
2005 dx


Posted By: sydonashae
Date Posted: Jul 20 2009 at 5:37pm
Green Smoothie Recipe!!
 
1 scoop green powder (you can buy at healthfood stores)
1 scoop whey protein (vanilla)
1/4 cup ground flaxseeds (brand - spectrum)
1 tsp probiotic powder
1 cup blueberries (frozen)
 
I use either a little organic fat free milk or cold water to make it smoother and I sometimes play around with ingredients to make it taste better.  The first four ingredients are a must though.  I have even replaced the whey protein with an EAS AdvantEGE low carb vanilla shake - yum.  You can always add a banana or strawberries.  A regular household blender works great - no need to go buy a juicer or anything!!  Let me know how you like it!  Big%20smile Susan


-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: sydonashae
Date Posted: Jul 20 2009 at 5:41pm
OH and I almost forgot!  Very important to drink at least 40 oz of green tea day - the real thing, not decaf.  A lot of the antioxidants are lost during the decaffination process.  Buy quality green tea from a health food store not lipton - it isn't potent enough.  xoxo Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: Nancy
Date Posted: Jul 20 2009 at 5:41pm
Susan,
 
I will copy and paste your post in to the chemo tips, as this sounds like a winner and something that will be easy to make.Wink
Nancy
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: sydonashae
Date Posted: Jul 20 2009 at 5:43pm
One more thing!!  This shake is to be used everyday as your breakfast - not just during chemo but after and for as long as you can stand to do it!  I also use a product called JUS (the most concentrated antioxidant on the market right now)  I take 4 oz of this everyday and often mix it in with my shake!  Ok that's all now!LOL Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: sydonashae
Date Posted: Jul 20 2009 at 5:45pm
That would be great!  Thank you!  Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: sydonashae
Date Posted: Jul 20 2009 at 5:49pm
Also please note on the post Nancy that they should always notify their doctor for anything new they are taking.  I think this shake is harmless - I was prescribed this shake by a naturepath AFTER chemo was over.  Some of the ingredients may interfere with chemo - but not sure.  I think the goal after chemo is to enrich your body with healthy things and this is one healthy shake!  Thanks so much!  Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: kirby
Date Posted: Jul 20 2009 at 5:51pm
I keep chopped up fruit, especially that, that is too soft/ripe for eating in the freezer to add to my smoothies.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: sydonashae
Date Posted: Jul 20 2009 at 6:12pm
Not sure if you are directing this at me, Susan (sydonashae) or the other Susan.  My reconstruction is scheduled for September 8th (a little later than I wanted) and I will have the expanders "installed" at that time.  I will for sure keep you all posted on how that is going!!  xoxo Susan

-------------
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process


Posted By: newalex
Date Posted: Jul 21 2009 at 2:34am

Hi, all

I am a newbie and like to hear success stories. My stats is that I had 1 cm tumor (TN) and 1 microspic node. Is 1mm microspic node considered as node positive or does it have same prognosis as node negative?
 
Anyone had similar stats and long term survivor?


Posted By: Pam M
Date Posted: Jul 21 2009 at 4:02am
Thanks for the link Steve. That is the article I am referring to. Again, it gave me a lot of info and hope.




Posted By: sharon rereg
Date Posted: Jul 21 2009 at 6:46am
Hi Newalex and everyone--I just want to add my story to the at least medium term survival stats. As you'll see from my signature (I hope) I was worse off at diagnosis and am still here, NED, 4 1/2 yrs post dx. My onc says she has never see a TN recur after 4 yrs post dx. I know it can happen, but am feeling pretty secure.

The chemo and all is a hard road, but can make all the difference. Good luck and lots of hugs.

Sharon

-------------
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED


Posted By: newalex
Date Posted: Jul 21 2009 at 6:58am

hi Sharon

So good to hear that you are 4 and half yrs out. I need to hear sucess stories as the whole day I have been down.

How many nodes did you have positve? Did your path reports say that you had lymphatic vascular invasion in the tumor?



Posted By: Nancy
Date Posted: Jul 21 2009 at 7:08am
Dear newalex,
 
Rena, one of our members is now 22 years out from dx and she had 22 positive nodes. Now there is a success story!Wink That should lift your spirits for monthsBig%20smile
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: dcronin
Date Posted: Jul 21 2009 at 11:04am
Hi all, this is a great website. I was diagnosed yesterday as "triple n." I am confused by all the survival statistics and am feeling very down. I had a lumpectomy (1.3 cm) and no nodes. I am finishing 5 days of mammosite radiation and now will have chemo. I'm 60 and would like to see my youngest child graduate from college in 3 years. Every person I talked to seems very down about this (even my son who is an intern!) Please help, I'd like to direct him to some good statistics.
Thanks so much for this cite.


Posted By: vickyann
Date Posted: Jul 21 2009 at 1:48pm
No nodes...now that is great news....my friend!!!!

-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Kazza
Date Posted: Jul 21 2009 at 1:50pm
Hi
Sorry to hear of your Dx.
 
A point has been made in a couple of threads in the last few days that stats are somewhat difficult.  Because TN is a relatively recent DX there could be (and likely) many long term survivors that had no idea they were TN. 
 
Stats are only useful information if the data is complete - in our case it seems a little too early to get realiable, complete data.  The silver lining is with such poor stats at the moment - the medical world is concentrating on finding anything that will improve our outcomes -
 
Have a look at the thread under talk - a message from Dr Susan Love - an inatitive to improve the spread of good news.  Hopefully in 10 years time the majority of us will be the good news stats............
 
I agree most of the information out there is very frightening, and hard to get your head around at first -the nature of a beast that is not yet understood- this site is great as there is soo many positive messages here.  You are in good company here, we all have ups and downs - you keep looking forward to that graduation.
 
Keep us posted on your journey - we do understand
 
Hugs
Kazza


Posted By: vickyann
Date Posted: Jul 21 2009 at 1:59pm
Big%20smileSusan,
Thank you so much for the shake recipe. I have been wanting to add one to my daily schedule. This sounds healthy, thank you for taking the time to post..
I realize we should all do our own research and check with our doctor, somethings we need to know others are making an idea work in their schedule to make us jump in..
I appreciate you,Clap
 


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: vickyann
Date Posted: Jul 21 2009 at 2:02pm
Sharon and Susan,
Thank you so much for going to the trouble to post.
I appreciate your suggestions. Sometimes we need to know others are working on their recovery to help us jump in and  go for it our selves....
Yeah girls thanks!!!


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Blessed
Date Posted: Jul 21 2009 at 4:01pm
Absolutely! I am new to this site. You must not give up hope.  I was diagnosed March 2008 (Stage 3 ).  I am on my third round of chemo.  AC & Taxol and Avastin & Xeloda did not work for with me.  As Granny said, GOD wants us to be in good health. I thank the Lord every day for FAVOR because I know that one day I will be in remission.   I wish I could say I have been in remission for 19 months. You are so blessed already. Take each day as blessing. Smile


Posted By: kikidan
Date Posted: Jul 21 2009 at 4:30pm
Hey Ladies!
Doesn't Christine (SapphireSkies) look awesome?!?! 
 
Christine, you look BEAUTIFUL!  Almost royal with that gorgeous smile!  I love that you posted your picture. 
 
Something about a baldheaded woman that always turns my head these days.


Posted By: sharon rereg
Date Posted: Jul 22 2009 at 4:54am
Hi new alex--I never knew how many lymphs were involved initially, because I had neo-adjuvant (before surgery) chemo. We knew at least one was involved, because it was swollen, and they biopsied it when they did the lumps. The good news was that when they did do the surgery they found nothing but dead cancer cells everywhere. I could never find out exactly what "everywhere" meant, but I suspect it was in a number of nodes, because the one was palpable at diagnosis.

Sharon

-------------
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED


Posted By: sharon rereg
Date Posted: Jul 22 2009 at 5:20am
Hi Dccronin--I've said this before, so you veterans on the site bear with me. A lot of the real downer articles out there--the ones that start "prognosis for distant mets with TN much higher than hormone receptive..."--all leave to the very end the important qualifier, which is "without aggressive treatment".

We still have stats from before the aggressiveness of TN was recognized and the standard treatment of lumpectomy with radiation was given to TN ladies with no node involvement. I don't think the stats are in for those of us who received the dose dense chemo no matter what the staging, but they are sure to be better. One thing they do know is that TN responds better and more often to chemo.

So keep your hopes up. I had 3 friends + me dxed within 2 years. 3 of us had TN, one hormone receptive. The 3 of us with TN are all still NED, the other is dead. Go figure.

Sharon

-------------
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED


Posted By: MABELS
Date Posted: Jul 22 2009 at 9:02am
Granny, Thank you for sharing God's love. I am so happy to be reminded of Gods strength. Thank you


Posted By: Tabatha00
Date Posted: Jul 22 2009 at 9:10am
I second that!!!!!!   Thank you!


Posted By: Mimi25
Date Posted: Jul 24 2009 at 12:01pm
Had no idea there was such an organization, but just wanted to post a note.
I had tnb in 1988, 9 positive nodes, double radical mastec, 6 wks radiation and one year of A/C/5FU (after 8 doses, the A was changed to methotrexate), with "booster" doses one week after each massive treatment (my doctor called himself "Megadose Joe"! ) It is now 2009!  Need I say more.  Old Joe cured me! 
Of course, at the time, I didn't know about the HER gene but have now been tested for it. 
Hang in there and do what it takes.  I've seen my daughters marry and held all four of my grandchildren. 
Mimi


Posted By: cg---
Date Posted: Jul 24 2009 at 12:10pm

WOW,

I am impressed that Megadose Joe was such a visionary - he was treated hormone negative breast cancer aggressively 20 years ago!!  Long-term survivors like Rena (who had more than 20 positive nodes) had one year of aggressive chemotherapy 22 years ago!
 
Megadose Joe gave you a wonderful life! I hope his life has been as happy as he made yours by having children and grandchildren.
 
Thank you so much for taking time to share your wonderful story.
 
Love,
Connie


Posted By: marthac
Date Posted: Jul 24 2009 at 2:52pm
I was in the process of becoming a pastor (age 57) when I was diagnosed. My doctors didn't offer statistics (and I didn't ask, really didn't want to know) but they said it was serious. Their plan - throw EVERYTHING we've got at it to knock it out.
I had dense dose chemo 4-1/2 months (thank God for chemo port!) before surgery. My tumor was large enough to be felt (like ping-pong ball size). By two weeks into chemo it felt different. By two months I couldn't feel it at all. By end of chemo they couldn't see anything on MRI. They still decided on mastecomy and node removal, followed by 38 doses of radiation, especially concentrated on the skin over the tumor site and armpit & neck. (radiation changes skin so no reconstruction option for me)
I went completely bald and didn't wear a wig. That lead many people to talk to me - strangers as well as friends. Many people walked up to me to tell me their survival stories! They want us to know, like I want YOU to know!
I held to my belief in God's goodness - one way or another I would always be in His love and care.
Today my hair is back and my energy is through the roof. I work and love my work, especially being involved in hospital chaplain work once a month. I don't need to tell my story often, but I listen and remember and my prayers hold confident hope in God's goodness even when we are walking through the valleys!
I remember days when I would surf the net looking for information. There is a lot of good information, but it doesn't all apply equally to you. When it got too much, I would declare that my health was not in the hands of the internet, nor was my hope! I would sign off, call and pray with a friend, and then thank God that He was in charge.
Also I would remind myself: No one gets all the side effects and even when I got some, they didn't last all the time. My doctors had lots of things to help so I would always be sure to let them know what I was feeling.
PLUS I changed medical insurance midstream to one that gave better coverage (being able to do that was a real God-blessed gift!) and my husband drove me over a hour each way to each appointment so we could get to the best team-based approach in our area.
I met a lot of women who didn't want to know the details but I thrive on facts - they help me feel more involved. And I let my doctors know that - they say they appreciate patients telling them how much info they can handle. Also I picked up every free cancer related magazine in the waiting rooms. There were stories that helped me understand terms so I could ask good questions.
I understand how scary it can be. We all need time to absorb these new facts and to grieve for changed plans. But remember, all the "facts" in the world are not about you, they are statistics based on lots of unspoken factors. We are not statistics. We are individuals and we rely on a power higher than any number! (My sister-in-law is a six year survivor of stage4 ovarian cancer - and she has been to many wonderful family events.) 
I am 60 now and I have been pastoring a church for over a year. July 11 my son got married and I officiated at his wedding. JOY is on the other side of chemo/surgery/radiation - for more of us than you might think!


-------------
DX:Nov'06 Stage3 TNBC,5cm-TX:chemo,mast,rad,complete response
DX:Jan'11 BRCA1, Stage4 TNBC,CTC24
TX:Avastin/Taxol @56 days"near complete response', CTC=ZERO
Hair gone,but going strong,loving life


Posted By: Nancy
Date Posted: Jul 24 2009 at 5:51pm
Dear Mimi25,
 
I'm with Connie ....Megadose Joe made sure that you would be around to hold those grandchildren, and your doctor, like Rena's and Flutist's apparently knew more 20 years ago than they know now. Please tell us moreWink Where did you receive treatments? Please post oftenClapIt is my daughter Lori who was dx with TNBC in June of 2007.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Jul 24 2009 at 6:04pm
Dear Martha,
 
Welcome to the site. Thank you so much for sharing your story, and how wonderful that you officiated at your son's weddingClap 
 
How right you are that each person is an individual and not a statistic. I have to remind myself of that everytime I read another article which is depressing,so that I can stay positive for my daughter Lori.
 
Each person has to fight this battle in their own way...and take this journey based on the information they have. Martha, may I as how you found the site and where you received treatment? Please post as often as you can, we would love to hear more from you.Big%20smile
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: vickyann
Date Posted: Jul 24 2009 at 8:10pm
We all need to hear the good stories..
Thank you! I will be at 2 years in December..yeah!!
I had a lung scare this year...This week a liver ct scan..both negative..no problem...I am doing great!!!!!
I want to live...........
I will live.......................
You can too........................
 


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Mimi25
Date Posted: Jul 25 2009 at 6:04am
This will be my last post.  I just wanted to leave you with my fantastic experience of surviving TNB.  In answer to one post, I was treated first in Houston at the Stehlin (sp?) clinic.  My chemo was at St Joseph's Hospital in Tampa.  Unfortunately, my doctor is now deceased....and he was a one-man-show.  He had been at M.D. Anderson and written books on the subject.  I was lucky to have found him. 
Good luck to you all,
Mimi


Posted By: ruth
Date Posted: Jul 25 2009 at 6:28am
I sincerely hope so.  I was told I had Triple Negative in 2007 and I am still here feeling great.  Had masectomy, chemo etc., and so far are doing fine.  I am very active and eat a low fat diet.  Good luck to you.  Try and keep cheerful and carry on with a smile, it can only help.  Smile
Ruth


Posted By: marthac
Date Posted: Jul 25 2009 at 10:09am
How I found this site: the leader of the cancer support group that I attended during my treatment days keeps me on her email distribution list. She forwards the e-news from http://www.cancercare.org/enews/ - http://www.cancercare.org/enews/  to her distribution list. The July issue announced "What's New: Helpline for Triple Negative Breast Cancer" with a link to this site.
 
Where I was treated: Leo Jenkins Cancer Center in Greenville, NC http://www.ecu.edu/cs-dhs/leojenkinscancercenter/breast_center.cfm - http://www.ecu.edu/cs-dhs/leojenkinscancercenter/breast_center.cfm
The things I really liked about this place:
1. multidisciplinary approach. They hold weekly conferences where the oncologist, surgeon, and radiologists, etc meet in the same room together and review cases so they all are on the same page.
2. the pure humanity of the practictioners there. There is optimism and care in the air.
 
Oh, one other thing. When they recommended chemo first, I was a little concerned because the tumor was so agressive and growing fast. I asked for their rationale for chemo first. They explained when surgury is done first, then they have no way to measure the effectiveness of chemo. They must rely on statistics about what has improved survival in others. But with the tumor still there, they can SEE if the selected drugs are having any impact on the tumor. If they conclude no, they can switch drugs - thus avoiding putting me through a full course of an ineffective drug.
 
Made sense to me. And it was wonderful to experience the disappearance of my tumor so dramatically. The only lingering impact from my chemo - a small place on the bottom of one foot with a bit of lingering numbness and a thickening of my toenails that is still working its way out.
 
Whenever I had a question they were very patient and helpful in assisting me in making choices based on best practices and knowledge. I came to trust their judgments, but I always continued to press for reasons more than "just because." They never hesitated to share answers. They were very good at pausing and giving me and my husband time to absorb their explanations. That was a priceless gift as we struggled to wrap our heads around all this new stuff.
 
Plus I think having my chemo first gave me more time to come to a sense of peace about sacrificing my breast. I had time to read about the pros/cons of mastectomy and radiation after successful chemo. I was ready to let go when the time came - because it was June of 2007 when I had my surgery, Nov 2006 DX.


-------------
DX:Nov'06 Stage3 TNBC,5cm-TX:chemo,mast,rad,complete response
DX:Jan'11 BRCA1, Stage4 TNBC,CTC24
TX:Avastin/Taxol @56 days"near complete response', CTC=ZERO
Hair gone,but going strong,loving life


Posted By: Donna Lynn
Date Posted: Jul 25 2009 at 6:47pm
Just want to encourage you to hang in there.  We all go into that fearful place from time to time, the key is realizing where we are and moving away from it.  I take time slots in 24 hours at a time.  I say " Today I am well, today I am alive".  There are so many stories of survivors!  We tend to hear the horror stories of the ones who did not beat this ugly disease.
I refuse to listen to those.... fill your mind with the positive.
Blessings!
 


Posted By: Tabatha00
Date Posted: Jul 26 2009 at 8:21am
DonnaLynn you are so right and that's what I do too!!!!!   I'm not them....they aren't me......so why compare?   Of course it is sad ALL the way around and not that we don't feel for them but we just can't compare because we are all different.   It's all in how you choose to look at it.   I'm a glass half-full girl and I REFUSE to be negative and listen to those negative stories.   Not that I don't down or have my own doubts from time to time but those are fleeting and I know I'll get through it.    ONE STEP AT A TIME....ONE DAY AT A TIME!


Posted By: SapphireSkies
Date Posted: Feb 20 2010 at 7:39pm
Bumping this thread for new member, Jean m b.  
Lots of good info here, Jean! :)
 


-------------


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.


Posted By: 123Donna
Date Posted: Feb 20 2010 at 11:34pm
It's great hearing all these survivor stories.  We need more of this to keep our spirits up!

-------------
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



Posted By: vickyann
Date Posted: Feb 21 2010 at 12:17pm
I pray for more after care success.  A plan or drug to prevent recurrance after you are finished with chemo. Does anyone know of a treatment while in remission?


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Lillie
Date Posted: Feb 21 2010 at 4:02pm
I don't know about tomorrow, I just live from day to day..... This is the line from a song I love so much. Three years and 3 months since my last treatment; or three years and 8 months since diagnoses, make me able to incorporate this line of thinking into my daily life now.

I will readily admit that for several months after treatment ended (11/15/06) I could not say this. I did suffer from post tramatic syndrome for months and resented everyone who ask me, "Aren't you happy to be finished with all that chemo". My "Yes" and "No" answer made me feel like an idiot and having to explain why was, and still is, the pits. I did go back to work in January of 2007 and worked full time for two more years. Not having the time to dwell on myself all the time did help.

Keeping a positive attitude has been a plus for me. If someone sounds dispariging about something I cannot do, I immediately start rattling off all the things I still can do. It really helps me....

Not being able to do all of my yard work (as I once did) could be difficult for me, if I let it be; but I refuse to be brought down by the fact that my back was weakened by the chemo. I already had scoliosis and it is worse now, so I live with it and "thank God everyday for what I can do".

I do think about recurrence sometimes but I do not dwell on it. Again staying busy is my best friend, in addition to sharing on this wonderful TNBC site.

Love in Christ,

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 - 11/2018-12 yrs NED


Posted By: sfalcon55
Date Posted: Feb 22 2010 at 12:16am
Hi Lindarenee,
 
As long as your alive and breathing there is always hope. You have to be strong and just know that you can beat this because you can. Please check out the Spiritual Support there are some scriptures there that will help to build your confidence in knowing that you can beat this!


-------------
Blessings
Jessica's Mom

DX12/15/09TNBC,Tested Positive for the BRCA1 Treatment Docetaxel, bevacizumab, Xleoda.
AC


Posted By: Galina2
Date Posted: Feb 22 2010 at 1:26am
Hello, there are two types of survivors: one do not want to know and goes on with her life, the other wants to know and worries. We here at the forum are the second type. It take 1y to get physically fit and another year to get phycologically toghether. They talk about chemo brain, but they forget about the mind.
Yes, AFTER it is very different. AFTER, we live in the PRESENT. And isn't it great? How many more hours, minutes and seconds of my life I have now? Much more than in my life BEFORE.
 
LOVE YOU ALL. LIVE, LOVE and FIHGT.


-------------
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08


Posted By: Lillie
Date Posted: Feb 22 2010 at 2:33pm
Hello all,

I am a survivor..... I choose to be involved in many ways that hopefully can offer help and encouragement to other cancer survivors. I post on this wonderful site, I am active in a local support group and I do volunteer work at the oncology center where I received my treatments.

It helps me to help others; to CELEBRATE with someone when they get a good PET or CT scan. It helps others in active treatment to see me going on with my life or hearing my story. I cannot JUST "go on with my life" as though I am not changed. I need to "pay forward" to help others. Every person I see is not going to live for years, or weeks, or sometimes days, but if I can offer a word of encouragement, a prayer or listen to their story, I know I have made an effort to help in some small way. None of us are guaranteed a tomorrow.

YES.... there are survivors of all varieties and time spans. Make the most of Today.

Love in Christ,

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 - 11/2018-12 yrs NED


Posted By: marthac
Date Posted: Feb 22 2010 at 4:56pm
I agree. Paying it forward is a wonderful way to show my gratitude for all the encouragement I received.
 
I am part of the evening volunteer chaplain program at my local hospital. I now know what it is like to be waiting for results, to be dealing with side effects, and to be grateful for information and hope. I know what a difference it makes to have someone listen and care and pray in faith - not sugar coating or downplaying the reality of the moment - but also not giving in toassumptions that we know the future because some statistic is quoted.
 
I am privileged to be able to come alongside families during stressful days and speak God's name with honesty - recognizing that we don't always feel like talking to God and we don't always agree that today seems like a God-favored day.
 
I never would want another day battling cancer, but I know that God puts treasures along every path and when the way seems dark those treasures are so very important. So I visit and listen and pray - and my presence is a blessing and I am blessed in turn .
 
I'm reading a very interesting book - not about cancer at all, but helpful in so many ways. It is titled: A Resilient Life by Gordon MacDonald. MacDonald is a pastor and best selling author. In his youth he was a runner and he says much that he learned from his coach has informed how he approaches life. He also draws from the Bible, especially Scriptures that seem to refer to this idea of a race: Hebrews 12:1-3 and Philippians 3 and 1 Corinthians 9.
 
I think that everyone that battles cancer or other life-threatening illness as a patient or family member has experiences that test the soul and give us the opportunity to become resilient people. You don't have to win every skirmish to be a winner. The experience and what we learn gives us a depth that others may not even recognize or appreciate. Facing mortality is our task and every day that we stand is a day of resilience - even if that "standing" occurs while resting on the sofa, or while crying!
 
Below is his contents page. Don't take it as an impossible hero's laundry list. I look at this and realize that cancer helped me recognize what is important and I can now say - I faced cancer with dignity - I faced cancer and every day (even the difficult ones) I can be a resilient person.
 
After I recovered from my chemo, surgery and radiation at the age of 59 (2 years ago) I was appointed to my first church as a pastor. There have been many challenges (although none have been health related) and I believe the strength I gained from my cancer experiences gave me a depth I never had before.
 
part I: Resilient people are committed to finishing strong
  ch 1: quitting is not an option
  ch 2: walking is unthinkable
  ch 3: building resilience is a daily pursuit
  ch 4: the face of aimlessness
  ch 5: the face of a champion
 
part II: Resilient people run inspired by a big-picture view of life
  ch 6: resilient people have a sense of life-direction
  ch 7: resilient people foresee the great questions of life's passage
  ch 8: resilient people cultivate Christian character
  ch 9: resilient people listen for a call from God
  ch 10: resilient people are confident in their giftedness
  ch 11: resilient people live generous lives
 
part III: Resilient people run free of the weight of the past
  ch 12: resilient people understand the importance of repairing the past
  ch 13: resilient people respect the power of memory
  ch 14: resilient people practice repentance
  ch 15: resilient people are quick to forgive
  ch 16: resilient people overflow with gratitude
  ch 17: resilient people squeeze the past for all its wisdom
 
part IV: Resilient people train to go the distance
  ch 18: resilient people prepare themselves for the "emergencies" of life
  ch 19: resilient people know exactly what has to be accomplished
  ch 20: resilient people keep themselves physically fit
  ch 21: resilient people grow their minds
  ch 22: resilient people harness their emotions
  ch 23: resilient people trim their egos
  ch 24: resilient people open their hearts to the presence of God
 
part V: Resilient people run in the company of a "happy few"
  ch 25: the value of lingering
  ch 26: the peril of the solitary life
  ch 27: how friendship works
  ch 28: there are certain people
 
I thank God for the gift of having folks like you who can understand my life experience. I draw strength and encouragement from others and, whenever I can, I try to offer that frank & honest hope to others.
 
Martha
DX:Nov2006 Stage3 TNBC,5cm,2 nodes
densedose chemo first,mast.,8wk rad
Hair back,energy too,going strong,loving life
 


-------------
DX:Nov'06 Stage3 TNBC,5cm-TX:chemo,mast,rad,complete response
DX:Jan'11 BRCA1, Stage4 TNBC,CTC24
TX:Avastin/Taxol @56 days"near complete response', CTC=ZERO
Hair gone,but going strong,loving life


Posted By: Karen W.
Date Posted: Feb 22 2010 at 5:14pm
Dear Linda Renee,
Wow, what an out pouring of support and love from the women of this site.  Hopefully this has brought you some comfort.
I believe if you think negatively for long enough, it can come true. So please change your thought process right now.  God has made us so we want to be with our families (we don't want to die), but we don't want to let fear lead us either. You can use the fear for good. When you are so fearful, and feeling totally hopeless, that is when God wants us to especially reach out to him and ask for help. Then have the faith to allow him to help you. Or heal you. And keep asking, knowing he can do just that.
 
I believe my cancer has been healed from doing just that. I was at my lowest point, crying on the floor, unable to get up or function.  And I asked God to lift up the fear from me. To take it away, and he did. A couple of months later my family prayed around me, with all of their heart, and we asked for total healing from cancer. Every microscopic cell to be removed from my body. I believe God healed me that day. On January 3rd, 2010.
 
I believe it with my whole heart, and that keeps the fear away.
God loves You!
Karen


-------------
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)


Posted By: shoyle
Date Posted: Feb 22 2010 at 8:50pm

Are you kidding yes there are survivors out here. I am one of them. I waqs diagnosed in 2005 with TNBC stage 2 her2nu2. I experienced chemotherapy, surgery and radiation. I had two of my lymph nodes removed as well. My story is not unlike most stories, I found the lump in my breast 2 months after my mammography. This was also six weeks after burying my mother who passed from a brain aneurysm. At the time my son was five years old.I also participated in a trial study to decrease my chances of osteoporsis from the chemotherapy, and those treatments were just as harsh as the chemo.  I often joked during that time to call me Jobette, because my story was beginning to sound like Job from the bible. However, during this time I begin to see what God sees in me, and I became motivated to look and treat life differently.Needless to say I believe my faith is what pulled my through.

TNBC is not easy but with prayer and perseverance you can survive, do not give up, continue to press forward, eat healthly, get rest, follow your oncologist's orders, and restore your faith in God.


Posted By: Karen W.
Date Posted: Feb 23 2010 at 11:15am
Thanks Shoyle for sharing your story and being an inspiration to all of us.Smile 

-------------
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)


Posted By: Carol (Tenn)
Date Posted: Feb 23 2010 at 12:02pm
Hello All,
 
I am so inspired by all your words concerning how you seek God in all you do. I would like for you to share your faith on the Spiritual Support thread. We've had almost 3500 hits on that thread since it's inception. I know your testimonies would reach those who need it most.
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: 123Donna
Date Posted: Mar 11 2010 at 8:03pm
bump

-------------
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



Posted By: Carol (Tenn)
Date Posted: Mar 12 2010 at 6:56am
Okay, a silly question....what is "bump"

-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: Lillie
Date Posted: Mar 12 2010 at 8:39am
Dear Carol,

Thank you for asking the "what is a bump" question. I've been wondering myself.

Love in Christ,

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 - 11/2018-12 yrs NED


Posted By: 123Donna
Date Posted: Mar 12 2010 at 9:08am
Carol, a bump is when you want to take an older thread and bring it to the front so it's active again.  Instead of starting a new thread, we have several old great threads that new members may have not seen.  I was talking to a new member who was asking does anyone survive tnbc.  I bumped this thread back up so that anyone looking for new posts, can see it and read through the positive stories.

-------------
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



Posted By: Karen W.
Date Posted: Mar 12 2010 at 9:44am
Hi Carol,
I have seen 'bump' used and tried to once. How do you do it???
Thanks and have a great day!
Love,
Karen


-------------
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)


Posted By: 123Donna
Date Posted: Mar 12 2010 at 9:50am
Karen,  If it's an older post you're trying to find, you will probably need to use the Search button to find it.  Once you do, I'd go to the last post, hit the Reply button and just type in Bump.

When new members come to this site, they see mostly other new women who've just been dx or people with recurrence.  It plays into their fears that no one survives tnbc.  The survivors are usually not as active on the forum and go about their lives.  It's good to have a thread or two running around talking about the women who survive tn.     

-------------
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



Posted By: dmwolf
Date Posted: Mar 12 2010 at 9:54am
of course you can type in anything. :)
just responding brings a thread to the fore.



-------------
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.


Posted By: Karen W.
Date Posted: Mar 12 2010 at 9:56am
Well that sounds easy... and it does help to hear the old threads. Thanks for sharing Donna!
 
Here is another question, I see you joined in August 09. How does the status work? I see you are considered a senior member??


-------------
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)


Posted By: 123Donna
Date Posted: Mar 12 2010 at 1:06pm
Karen,

I was confused by the status also when I joined.  Once you've reached 100 posts, you become a Senior Member. 


-------------
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



Posted By: vickyann
Date Posted: Mar 12 2010 at 5:36pm
tnbc
Hello everyone!
27 months and no recurrance!!!!
Yeah!!!!!!


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Bernadette
Date Posted: Mar 14 2010 at 10:33pm
 I found a lump for christmas 2007. The biggest problem I have had to overcome was to trust that I am healthy again. People try to encourage by saying all the things they think you  want to hear. Sometimes its hard to listen because you don't feel what they say to be true. What you have to do is read between the lines. They love you . They care about you. They wish you health and happiness. I AM A SURVIVOR. I have stuff I do that has nothing to do with hospitals, doctors, medicine, appointments etc. I have returned back to work full time.  I AM A SURVIVOR AND all these people who are here talking with you are survivors . We are the statistics and there is NO OPTION except surviving. Keep on living to your fullest.


Posted By: Carol (Tenn)
Date Posted: Mar 15 2010 at 6:08am
Good Morning.....
Donna is so right. But I do wish the survivors would come on once in awhile and let everyone know how they are doing.
I have a question....my first diagnosis was June 2008...my recurrance was July 2009...Will I have my 2nd year anniversary this summer or my first???
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: HairSprayMom
Date Posted: Mar 15 2010 at 12:36pm
TNBC IIIb Metaplastic Carcinoma 2.7 cm tumor in chest wall.
 
2 yrs 5 months and I am not only surviving, but thriving!
 
XO, Regina


-------------
39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!


Posted By: Lisa L
Date Posted: Mar 15 2010 at 5:57pm
Survivor here - checking in!  I am at 4 1/2 years from dx, and NED, yes people do survive triple negative. Thumbs Up

-------------
Dx 8/05 age 43
mast & lat flap 10/05
Triple neg
BRCA neg
IDC 4.5cm rt br
0/1 sen node
6 A/C 5 Taxol, 25 rads 11/05-6/06
Central Illinois
Currently NED


Posted By: marthac
Date Posted: Mar 16 2010 at 1:19am
Question: NED - what does it stand for? No Evidence of Disease??

-------------
DX:Nov'06 Stage3 TNBC,5cm-TX:chemo,mast,rad,complete response
DX:Jan'11 BRCA1, Stage4 TNBC,CTC24
TX:Avastin/Taxol @56 days"near complete response', CTC=ZERO
Hair gone,but going strong,loving life


Posted By: marthac
Date Posted: Mar 16 2010 at 2:04am
I saw this posted the other day by a friend of a friend on facebook. It was not related to cancer, but another kind of disappointment and questions about my friend's future. I found it helpful. Perhaps it can help when those times of doubt about cancer recovery and life options keep you awake...
 
Your current situation reminds me of something Mother Teresa said one time. It was shared by John Kavanaugh who had once asked her to pray for him. It goes like this;

News of Mother Teresa's spiritual turmoil didn't shock Kavanaugh, who once sought her counsel as he pondered his future. He wasn't sure if he should return to America to become a university professor or if he should stay abroad and work with the poor. Kavanaugh asked her to pray for clarity.
"I was surprised when she said she wouldn't pray for clarity," he said. "She said what I needed was trust."
Kavanaugh responded to her that he assumed she had always had clarity; that she always had known what she was supposed to be doing.
"She said that she never had clarity; that all she had was trust."

Contine to trust in Him and in yourself. Clarity may never come but that will not hinder you from fulfilling the desires of your heart for His Kingdom.


-------------
DX:Nov'06 Stage3 TNBC,5cm-TX:chemo,mast,rad,complete response
DX:Jan'11 BRCA1, Stage4 TNBC,CTC24
TX:Avastin/Taxol @56 days"near complete response', CTC=ZERO
Hair gone,but going strong,loving life


Posted By: SagePatientAdvocates
Date Posted: Mar 16 2010 at 2:06am
Dear Martha C-

yes NED=No Evidence of Disease an acronym even better than LOL or OMG Smile

my daughter, is now 5.5. years out...NED!!!!

Yes, there are women who survive TNBC and tragically some don't..

all the best,

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


Posted By: dmwolf
Date Posted: Mar 16 2010 at 10:16am
A: >60% 

-------------
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.


Posted By: Genie
Date Posted: Mar 16 2010 at 5:20pm
2 years since diagnosis. NED so far, Praise God! 69 and going strong! My sister and niece still show no signs of the disease after 7 and 8 years. God is great and good!

Genie


-------------
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC


Posted By: Karen W.
Date Posted: Mar 16 2010 at 7:21pm
I didn't know TNBC had been around for 7 and 8 years. Thank you for sharing!

-------------
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)


Posted By: Karen W.
Date Posted: Mar 16 2010 at 7:23pm
I like it... NED! Woo Hoo!

-------------
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)


Posted By: Genie
Date Posted: Mar 16 2010 at 10:19pm
Karen W.,
Back when my niece and sister were diagnosed, they weren't calling it TNBC. They were just informed that they were estrogen-, progesterin-, and her2-. My niece was diagnosed first at age 38, my sister at age 60 and myself at age 67. We have all tested negative for the BRAC 1 & 2 genes. They elected to have lumpectomies while I went for the bilateral mastectomy due to having a pre-cancerous lump removed 10 earlier. I have never regretted my decision - with no reconstruction and with the protheses, I am perky all the time and don't worry about the effects of gravity taking their toll.LOL

Last February it was discovered that I had 2 large (over 2" each) nodules in my thyroid. The biopsy showed cells that are precursors of cancer so I had a total thyroidectomy in April. I think we all worry at times that our cancer will return but I have chosen to live my life to the fullest and enjoy being alive.

Stay positive - it helps!

Genie



-------------
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC



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