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Just diagnosed with TNBC....Update

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

I was looking for something about TNBC and found this forum. I'm so glad I did because I was feeling the end was closer than the beginning of my treatment.

I started my treatment last week. I really didn't have any side effects, except for the steriods. I will do 4 treatments, every other week of A/C, then 4 treatments, every other week of Taxol. Then I will have a bilateral and radiation.

I donated my hair to Locks of Love....shaved the rest and will go to work with my new wig. I haven't told a lot of people at work, but I'm sure they'll know soon enough! Especially, since I was a long curly blonde and now I'm a very short straight auburn! LOL

I hate that I have to go through his, but it is what it is....I was just glad to see that the outlook wasn't so gloomed for me afterall.

I look forward to getting to go through this with such a great support group! :o)

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

Welcome Janelle, to the club we'd never want to be a part of. But you have found a wonderful place to ask questions, vent, and get tons of support from the lovely ladies who have been through all of this (or are going through it now). I too am TN and my course of treatment was exactly like yours. I am now 8 months out from chemo, 4 months since my last rads, and am currently feeling and doing fine. I was also DX at Stage 3C, grade 3. I am older than you, though, 59. I got so much support and information from everyone here whenever I had questions or concerns, or side effects that my oncologist had never heard of. I always knew that someone here would have experienced the very same thing and would be able to ease my mind, which they did on many, many occasions. This site was (and continues to be) so important to me.
Hugs, Linda

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

Thank you for responding so quickly! I've been reading the post all afternoon and finally decided to write. I'm still new to this and go back and forth with the emotions of survival. I really believe that this isn't a death sentence, but it's so hard to believe that it isn't too.

I don't really know what I need or want right now, but am glad I took the first step. I was really looking forward to any input someone was willing to share!

Thanks again! :o)

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Very glad that you wrote on here Janelle and welcome! You can survive this and you will. Try to stay positive and just focus on your treatments.

Good luck,

Kylez

carkris's picture
carkris
Posts: 4518
Joined: Aug 2009

Janelle welcome to this site. You will find there are many triple negative women here. I am sure they will post. You seem to have a great attitude. ask any questions, someone usually has an answer. The people here are a lovely and kind sisterhood.

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Welcome Janelle to the club no one wants to join. Here you will find lots of support, love and encouragement!

Wishing you the best of luck!

pokrydi's picture
pokrydi
Posts: 99
Joined: Feb 2011

Welcome I am tnbc stage 2 had lumpectomy and 21 lymph nods taken out 2 positive on 1/14/11 and more tissue taken 2/8/11 and port put in. Had 1st chemo this past thurs was rough but getter better. In the short time joining I have learned so much and you will feel the benefits of the positive people on this site. Sounds like we are following the same pattern I have 4 of the a/c every other week then 4 of the taxol then radiation. I will be 50 in august. Welcome hope I can help you thru this. Diane

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

I started my chemo last Wednesday....I'm really excited to meet someone on the same schedule! I hear that the side effects hit more so later, but I hope not! I would like to keep in touch, if you don't mind....

I'm really excited about all the "Welcome"s....I need all of you! :0)

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Donating your hair to locks of love is such a kind and generous gift! Welcoming you to the site and sending you good luck with your chemo!

Hugs, Leeza

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

My BC was different than yours, but I had mastectomy, lymph nodes, then A/C chemo. Then Abraxane (Taxol cousin) and then Herceptin infusions for a year because I was HER-2+. Also had rads.
I know that others here have been treated for your particular type of BC, so I'm sure you will hear from them.

Just want to welcome you and to reiterate that we all support and encourage each other here. I think you have come to the right place.

Hugs,
CR

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

With all these replies....I have no doubt I have come to the right place! Thank you all for the warm Welcome and Support!

I look forward to talking and getting to know you better! I hope that I will be able to help you too!

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

You are at the right place for support Janelle! We are a friendly group, as, I think you noticed. LOL

Hugs, Lex

MAJW
Posts: 2515
Joined: May 2009

Welcome Janelle...I am so sorry about the reason you found us...but glad you did....this discussion board helped me maintain what little sanity I had left when diagnosed! I am triple negative, Stage II.... I went from stage I to II during the lumpectomy, due to the size...bigger than they anticipated..
2.2 cm. Clean margins and no lymph node involvement. I then had 4 chemo infusions of Taxotere/Cytoxan, then 6 1/2 weeks of radiation..I was dx. In April,2009. I am 17 months out of all treatment, my energy has returned almost 100% have had 4 haircuts and back to enjoying life.

Please keep us posted on your progress..we're a wealth of information, WE GET IT, we understand and we care!
Wishing you peace and comfort as your journey continues...
Nancy

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

I love the "4 haircuts"!!!

I actually have 1 lymph node that was swollen and tested postive, but I don't know about any of the others....I guess it really doesn't matter at this point. They said treatment was the same for Stage II or III....I just happened to get bumped!!

I feel blessed already...

Clementine_P's picture
Clementine_P
Posts: 363
Joined: Feb 2011

So sorry you got this life changing diagnosis. I didn't have TNBC but had the exact same chemo as you on the same schedule - and I am 40. I finished up in September with chemo and also had a bilateral mastectomy (but had the mastectomies first before chemo). If you have any questions, feel free to ask. I want you to know that you can do this. You already have one treatment under your belt. You will be okay.

Stay Strong!

Clementine

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

Thank you....your story is definitely encouraging! I'm just amazed at how many people are affected and yetso supportive!

I'm looking forward to seeing the majic of the chemo....not sure how long until there are signs that the cancer is dying, but I hope it's sooner than later!

Seems like when you're first diagnosed, everything just keeps coming back bad. The only good news I've recevied was that I was BRAC NEG...I have one daughter and that was the best news I could've asked for...next to being cured! :0)

I know where to go if I need anything!!

Wow!

PinkPearl's picture
PinkPearl
Posts: 280
Joined: Oct 2010

I am so glad you found this site because everyone really does care and there is usually someone who can help with any question or frustration you have through this journey. I have a different diagnosis and treatment right now, but I too have problems with the steriods. Hope yours are resolved. You have a great attitude and that will carry you a long way!

GayleMc
Posts: 311
Joined: Jan 2010

I have a different diagnosis and am older than you, but wanted to welcome you. You will find so much support and information here. By the way, if your photo is with your wig, it looks great!!!

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

And can I say, how impressed I am by your wonderful attitude.
You got it going on (:

This is an amazing group of women and men, who will give you
advice, support and a chuckle or two here and there.

You figured it out from the get go, it is what it is!

Hugs,
Ayse

Miss Murphy's picture
Miss Murphy
Posts: 302
Joined: Feb 2010

I didn't have Triple Neg - mine is estrogen positive and I'm a three year vet. But in spite of our differences, we're still in the same boat. This board is great- always someone to answer any question you may have. I'm sorry you had to find us but glad you did! I did have a masectomy so if you have any questions about that I'll be happy to help.
I only wish the best for you as you go thru your treatment.

Hugs, Sally

fauxma's picture
fauxma
Posts: 3531
Joined: Dec 2008

Welcome to the best site that you never wanted to have to come to. We are here for you whenever you need us. And it won't be long before you are reaching out and helping others cause that's how it is with us. My prayers are that your treatments cause as little discomfort as possible.
Stef

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Let us be your support group as we are real experts! LOL Praying for a successful surgery for you and with your treatments.

Hugs, Megan

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

My dx is different than yours but we are all still here together. You will be glad you found this site. I know I am. There is a lot of informantion and support to be had here. And if you just want to vent you will find we are good listeners too. Just remember You Can Do This!

Hugs,
Georgia

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

Just wanted to welcome you!
Hugs,
Wanda

midnight10
Posts: 74
Joined: Sep 2010

My dx at the end of July10 was TN Stage 2B Grade 3 and my treatment has been the same as yours will be. Had lymph nodes on right side removed and 7 of 15 were positive. I'm a little better than halfway through rads and will be finishing reconstruction after that's done. I've had few issues-some nueropathy in the feet from the second round of chemo and skin issues from rads, but nothing unmanageable.
Oh-my hair is now about 3/4 inch long! I find that exciting!
This is a great place to get info and support!

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

I want to welcome you to the site and to wish you good luck!

Lex

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Double post

mom62
Posts: 600
Joined: Mar 2004

Hi,

You will make it through no worries. Be strong and you will get through this and some day even feel normal again. It will change your life but in a good way. We are here for you always.

Terry

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Welcome, but as others have said, I truly am sorry you had to find us. In my case, the cancer is TNI(inflammatory)BC. So my treatment plan has been a little different. But with the support of everyone here I'll soon be done with the treatments. I honestly think I would be crazy, and would have driven my family crazy, if I hadn't been able to come here. I guess what I'm saying is that you've found a great place to be.

Hugs,

Linda

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

Hello, I only wish I would of known about this board when I was going through treatment.
But I must say I love all the people on this board, Very kind and helpful.
I too was Dx TN Infaltrating and in situ Bc, I'm two years out sense my Dx.
Lots of Hugs and well wishes coming your way!
Karie

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

Welcome Janelle,

I was diagnosed with tnbc shortly before my 52nd birthday. I had a complete axillary dissection where 22 lymph nodes were removed. 2 were positive. I then had a right mastectomy followed by 16 rounds of chemo - 4 A/C and 12 Taxotere. No radiation. My last chemo was in 8/2010. While the chemo was VERY difficult I made it through and am dancing with NED.

My daughter is a college freshman at a school 3 hours from our home. I was able to be there when she moved into her dorm in Sept. although I wasn't much help. I even climbed the flight of stairs in her 2 story dorm that has no elevator. Of course, she is on the 2nd floor. 6 weeks later I attended Parents Weekend and climbed the stairs in the football stadium. My hair prior to chemo looked just like your wig. Pretty much the same color and style. Now it is very wavy and a salt & pepper color. It is so strange.

You can do this. The Pink Sisters will be here for you.

24242
Posts: 1417
Joined: Mar 2001

I didn't find out I was actually triple negative until 13 years later so found it interesting they could go back and test the cancer for it.
I often respond to newbies since I had stage 3 with 11 out of 21 positive nodes and had seperate mastectomies along with chemo and radiation. I had a lump that grew in a week in arm pit aftering having a diagnosed fibrous cyst in right breast already. I wasn't surprised at the diagnosis and just resigned myself to everything they would have to do since my decision was to fight I would do all I could. There are so many of your sisters on here who have survived amazing things and HOPE can easily be found all we have to do is look for it...
Tara

CypressCynthia's picture
CypressCynthia
Posts: 3913
Joined: Oct 2009

I am so sorry that you are going through this, but you have come to an excellent place to help you through it. The Kindred Spirits here will always be here for you.

And it is just lovely that you donated your hair. BTW, I think you look wonderful--very pretty!

I had Stage 3A (large tumor, 4 nodes), but my tumor was a little different as I was estrogen receptor positive. I had chemo, mastectomy, radiation and have been 24 years (Feb 1987). So don't give up--there are new treatments every day!

mimix3
Posts: 3
Joined: Jan 2011

One year ago I was @ the same place you are now. I'm older than you - but, hopefully that will give you even more optimism. I was diagnosed with Stage 3b, triple negative BC - with a very large mass in my right breast. I received 4 dose dense (every 2 weeks) of AC and then 12 weekly treatments of Taxol. All in all, they were doable - not fun, sometimes a little difficult - but doable. I had a bilateral mastectomy in August, 2010 where it was determined that the mass was still 10+ cm. I had approximately 7 weeks of radiation to the right chest wall, underarm area and subclavical lymph nodes. I finished all treatments around the first of December. I told my 3 little granddaughters that when they came to my house for Thanksgiving, I would have some hair of my own. Actually, I uncovered by head, stopped wearing my wig, etc. prior to Halloween. I was still pretty fatigued and burned from radiation @ Thanksgiving. By Christmas, I almost felt like my old self again.

My stamina has now returned returned. I feel good. I have very few (minor) lingering problems from the chemo. I don't look @ statistics and I don't listen to negative people. I would be very glad to answer any questions/concerns you might have. I am just so thankful to be where I now am.

camul's picture
camul
Posts: 2012
Joined: Dec 2010

Welcome, I have only been on this site for about 3 months, but the pink sisters have been such a support and wealth of information.

Prayers are with you as you begin your journey.
Carol

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Praying for you and I am glad you found this site of pink sisters!

Hugs, Diane

Findingout
Posts: 132
Joined: Dec 2010

Hi Janelle,

Welcome... if you have to go thru BC, we are sorry, but this is the place to come for support. I've been here 2 months (diagnosed Dec., 2010, unilateral mastec in Jan, started chemo last week) and never once have I posted a worry, concern, question, or vented, and not received lots of supportive responses. It's been, by far, the most helpful thing for me on this journey and I'd have been lost many a time without all my sisters on this site.

You sound very upbeat and positive and I think that's key. Sometimes though we have to experience the truth of ALL our feelings. For me I've found the dark ones do pass as long as I honor them; then I move on. I'm positive too and I don't know you, but just writing what comes to mind.

Your hair (wig!!) looks really cute. My hair hasn't started to come out yet but I'm sure it's soon and I'm getting ready for it!!!

Hugs,
LynD

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

I know exactly what you mean about "all our feelings" because I'm good 99% of the time, then that 1% thought comes...."we're going to beat this right?!?!"! I know it's normal, especially since I just found out last month. I've only done one treatment and am anxious to get a couple of more under my belt.

Thanks for the the kudos on the wig! My co-workers were totally freaked out by my MAJOR change! Amazingly enough, no one realized it was a wig! :o)

Has anyone use the free house cleaning service available to us? My daughter just sent me a link, but I haven't had a chance to check it out....

Hugs Everyone!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Hugs and a big welcome to you Janelle! You look beautiful!

Leeza

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

This is not the site we want to seek out, and yet it is an amazing place! My cancer is triple negative as well. It was stage 3c when I was diagnosed in August of 2009 (I was 37). I went through 4 A/C, 11 Taxol, bilateral mastectomy (all my left side lymph nodes removed and they were all positive for cancer), both ovaries, immediate reconstruction, 25 radiation treatments and more reconstruction. Many people on here put it into remission after this so don't be discouraged by my story but it has come back in my bones and I'm now stage 4. This is not the end of me though, I'm a fighter and will fight this one too. There are several woman on here that are stage 4 and many years out so it gives me hope. If you have any side effects from your chemo, come here, there's all kinds of support and ideas of what worked for others. You sound like an amazing soul and I'm so glad you joined our group of "Kindred Spirits" :)
Miles of Love,
~Kari

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

Thanks everyone for the continued warm welcomes and support!

I've been doing some research on TNBC and I really don't like what I keep finding! My Dr seems to think she'll be able to cure me, but then I read that it can reoccur within 6 mos.....

So, when I signed back on here, it was nice to see the additional posts! I really feel that I'm going to be okay, but when you read the stats...it's scary.

I really appreciate all of my new "Kinded Spirits"! :o)

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Your pink sisters are always here for you Janelle! Think positive!

CypressCynthia's picture
CypressCynthia
Posts: 3913
Joined: Oct 2009

When I was first diagnosed, back in 1987, I read that I had about a 25% chance of making it 5 years. I didn't like those odds, so I quit reading. I am still fighting, but I've gone 24 years, so keep fighting!

dee1962's picture
dee1962
Posts: 99
Joined: Oct 2010

this is for Pinkkari09, I to am triple neg. stage 4 with mets to spine, i would just like to know if your onc. said your would have to be on treatment for life. The rest of my life is what i'm having a hard time dealing with....Dee1962

sparkle1
Posts: 222
Joined: Jun 2010

Welcome. You've come to the right place for knowledge, love and support. This is a wonderful board where you can really be yourself and let your joys and fears be known. We have all been there in one way or another. I find sharing and learning will keep you positive and fighting. Again welcome.
Sparkle

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Welcoming you to this great site also and wishing you the best of luck.

Hugs, Noel

Brooklynchele
Posts: 123
Joined: Sep 2010

I was diagnosed last summer with Stage IIB. I turned 44 the day before my first chemo treatment. I've had a lumpectomy and then a partial mastectomy since the surgeon didn't get clear margins. No node involvement. I did 2 rounds of Taxotere/Cytoxen before I stopped chemo. I did not do radiation b/c of other medical concerns. I have been considering a double mastectomy as suggested by my surgeon but believe I will hold off on the surgery. I also got BRCA tested for my daughter. Fortunately the test was negative.

There is life after treatment. I am happy to report that my once stick-straight jet black hair is coming in medium brown and curly!

Hang in there because you WILL get through this.

Michele

beetle25's picture
beetle25
Posts: 150
Joined: Sep 2010

Glad you posted so sorry that you have to be here. I was also 45 at diagnosis. I finished chemo in June, then had surgery followed by radiation which I finished in October. Just had my port removed and am doing very well. I had 6 treatments of TAC had some difficutly with the first two treatments, as a result they had to reduce the chemo by 25% for two of the drugs and left the one drug at the same dosage. Not that the rest of the treatments were a breese but they were better. My hair started to return following the last treatment came in fast and then quite growing for the most part. Unfortunetly mine came in white. My Onco keeps telling me how good I look with the white hair. Bad part is that sometimes I get asked if I get the senior discount. The treatments are not necessarly easy but they are very doable and you will get through it all.

Hang in there

(((( hugs)_)))
Beetle

LauraCarter's picture
LauraCarter
Posts: 5
Joined: Mar 2011

Just found this site . I was diagnosed a yr ago this month with BC at age 49. The tumor was in rt. breast and 2cm , no node involvement, her2 neg., estrogen fed. My BRCA was also negative. So that means I got this cancer environmentally not genetically. Had lumpectomy and radiation & taking FEMARA for five years. Anyway, a little confused why your bc was stage 11B if no node involvement and also why the rounds of Taxotere/Cytoxen? My breast surgeon was also suggesting a double mastectomy for me but my oncologist thought it was not necessary ("over kill")and a second opinion confirmed that. Therefore, did not have the mastectomy -thank goodness.
Guess I sometimes wonder why no chemo, when I read about others with similar bc types and stages who did have some.
I have sort of made peace with my cancer and stopped investing so much of my time and energy into the fear of it. Still scary if I think about it too much, so I don't. Try to concentrate on getting healthier, stronger and wiser, which is a lot to think about :-)
Hope you are doing well. Here's to remission forever!
Laura

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

Thanks Beetle! I think I am about ready to stop checking out my "chances" and just hang-out here with people going through what I'm going through and survivors! It's nothing but positive, even when it may be tough!

Laura...I'm actually Stage 3 with Node positive, so they are giving my Adriamycin/Cytoxan for 4 treatments, then Taxol for another 4 treatments. My tumor is large, so they want to shrink it as much as possible before surgery. My tumor didn't show up on my mammorgram or the ultra sound, so I really don't want to chance going through this again, so I'm having the bi-lateral.

I've started checking out all the "healthy" options in food and life and you're right...that takes a lot of time! There is soooo much info, that it occupies most of my free time now! It's nice not thinking about my new life....for now.

I have my second treatment next week. I'm really excited because my doctor says we should be able to feel the tumor shrinking by the third treatment! I'll be one closer! :o)

Also, I just wanted to let everyone know that I found these wonderful caps! They're 96% Cotton and 4% Lycra. They are great for around the house, sleeping and under scarfs/hats...I just love mine! I ordered them from a 25 or 30 yr survivor named Ruth Klampart. You can visit her website at www.slumbercap.com or her number is 1-888-326-1818. It was much cheaper to go directly through her than the store.

missingtexas's picture
missingtexas
Posts: 146
Joined: Jul 2010

Hi Janelle!! I was Estrogen recept + but otherwise pretty similar. I'm 39. 8.8cm tumor. Positive nodes. Stage 3 and grade 3. I received adriam, cytoxan and taxotere all together for a total of 6 treatments. Bilateral mastectomy (3 nodes positive). 33 radiation treatments. They could not even feel my tumor by the 3rd chemo treatment. :) Keep the positive attitude (and stay off the sites that give statistics!!!)!! March 15th is the one year anniversary of my diagnosis...believe it or not, this year went pretty fast. Sending hugs your way.
Dana

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