Calling all TNs

VerukaNY

thank you Stupidboob and Redheeledwomen.  Definitely food for thought.  I guess I will talk to my surgeon and onc again, and maybe get an opinion from a radiation onc.  I'd hate to expose myself unnecessarily, but I feel like I have to do everything possible.  Course that also means hauling my butt out to get some real exercise!

Turbo81

I guess I'm late to this party! 

33, did my first ironman tri in June 2014, diagnosed with stage II-III IDC July 2014... Apparently I did an ironman with cancer.

right side 4 cm tumor, node -ve (still not 100% known), neo- adjuvant chemo, had 4 rounds of AC with a partial response (25% ish... Docs wanted more), just started Carbo/taxol - 12 x t, 4 x C.  Tumor is sitting against my pec with some invasion - trying to get it to move off there before surgery.  So far doesn't seem much change with the second set of chemo. 

I'm pretty terrified! Was doing mentally well until the MRI was disappointing... Looks like I'm saying byebye to my Pec! 

Anyone got much experience with chemo not responding? I'm taking it as a very bad sign... Originally was just worried about getting back to triathlon, now I'm just worried about surviving  

Moderators

Dear Turbo81, Welcome to the BCO community. While we are very sorry that your cancer diagnosis brought you here we are glad that you reached out. This is a caring and informed group of others who can lend support and experience to help ease your path.while you are waiting to hear from others you may want to check out some information on our site. Triple Negative Breast Cancer Keep us posted. We are sending warm and caring thoughts your way. The Mods

jenjenl

I think the eating and exercise is the hardest part. I actually weigh the most i ever have...stupid hysterectomy!

Next week I have a bone density scan not sure what to expect. 

Seashore

Turbo81 - I'm so sorry you are dealing with this but know that these boards are a great place to share.  Like you, I also had only partial response with neo-adjuvant chemo.  I had IDC and DCIS, in 2 different quadrants of the same breast.  In my case the IDC decreased about 50% and the DCIS responded even less from chemo. My tumors were closer to the skin or nipple areas and so I can't add anything about your concerns about the pec muscles.  Not sure if you've already had your consult with your Breast Surgeon but I encourage you to raise your concerns in the consult appt(s) with the BS and/or also get a 2nd opinion from a different BS.  During the last 6 weeks of my chemo I got a 2nd opinion from a different BS and ended up changing surgery teams (I felt so much more comfortable with the new BS and her recommendations).  

Stupidboob

thank you simplelife4

Stupidboob

jenjenl it sure is.................this is where I am failing BIG TIME!!!   I just can't seem to eat right or make myself exercise.  I have major stomach issues and eating right sometimes just does not/can not happen or I am in major pain.   I hope all will be well on your bone density test.........it will be fine and that is one test that we can all breeze through  (silver lining at least)

Stupidboob

Turbo81 can't offer much help but I can offer support and send you a big comfort hug..........[[[Turbo81]]]
Mine returned between my major and minor pectoral and I had to do the chemo again and radiation.  I know your fear because the surgeon did not want to operate on mine because I might lose the use of my arm.  My thoughts and prayers are with you. 

simplelife4real

Sadie, are your stomach issues caused by meds or something else?  The reason why I ask is that I had digestive problems for years that I hadn't addressed.  After I got done with bc treatments, I finally broke down and saw a GI doc.  It turned out I had both Crohn's disease and gluten intolerance.  Now that I'm on meds for the Crohn's and have cut out all gluten (as well as dairy), I am world'

s better.  I hated having to go to yet another doctor, but it really paid off for me.  I went from years of abdominal pain to almost normal.  

Turbo, don't give up on the chemo.  The taxol carbo combination may really turn things around.  How far along are you with the taxol/carbo?  I didn't have carbo (it wasn't as routine last year when I had my chemo), but that stuff is really strong and many TNBC ladies have had awesome results with it.  I had taxol first and then AC.  It wasn't until the very tail end of my chemo that my tumor finally got to the point where we could no longer feel it.  I ended up with only minor residual bc in two nodes and nothing in the breast by the time of my surgery.  It sounds like you have just started the taxol/carbo combo so you have several months to go for chemo to work it's "magic."  This is all scary stuff, but it's still possible for the chemo to do it's thing.

Hubby and I are on our way out to Vegas to meet up the some gals I met on-line through the Sept. 2013 chemo thread here on bc.org. Tonight we are in Taos, NM.  I can't believe how beautiful it is here.  The aspens are turning for fall.  Breathtaking!  I just feel so, so grateful to be having a chance to take this trip.  I am just loving every minute of it.

Hugs,

Kay

Radical2Squared

Turbo81,

I'm sorry you find yourself here with us. I just got through posting on my June chemo board about how bc.org has been better than any shrink and cheaper too! There is not a person here who doesn't get it. I can always find someone who points me in the right direction.

I had cancer in both breasts. Though my tumors were small, one sat in the muscle. There was not a lot of muscle taken to get clear margins but my bs warned me that it would be more sore than the other breast. Well...it turned out the one with the missing muscle healed easier than the other! I still have tissue expanded in so I don't press a lot of weight, but I don't notice the missing muscle...but again, it wasn't a lot!

Meadow

Welcome Turbo Sorry you had to join this sweet club, but now that you are here you will find support.

Kay I am so glad you are going to Vegas, please send me details of all the fun!

Dizzy222

Turbo. Sometimes one drug works when another doesn't. It's good you had neoadjuvent chemo so they can see your response. Even poor results give a clue about what needs to be done next. You are going to beat this! Give this next batch a little time to do it's thing. This time next year we will compare our Tri results!! You got this.

ALHusband

Doctor on the news just said women should avoid sunscreen that contains a chemical called "oxybenzone" as it may cause breast cancer. He says obviously sunscreen is important, but you should use sunscreens that don't have "oxybenzone" in them. This chemical, he says, is a "hormone imitator" that acts like estrogen, which is why it could contribute to breast cancer. He also says people should avoid skin care and other products with any ingredient that ends in -----paraben (i.e methylparaben, ethylparaben, propylparaben and butylparaben). According to him, these "parabens" are also "hormone imitators". My feeling on this "stuff" is who knows if they do or don't cause cancer or anything else...but if there's evidence that it might...then why use it? There you have it ladies, my humble, lay person's "public service announcement" based on what I just heard from a doctor on TV.

Turbo81

thank you everyone for the the responses! This is a pretty awesome community.  I got a check up and was told the carbo/taxol is working and to basically stop feeling it every day to see if it changes.  Meeting with my surgical team to discuss the pec muscle stuff next week also - feeling much more positive after the last couple weeks. 

Meadow

Thanks ALHUSBAND and I agree with you. Parabens are in too many products.

Turbo, keep up that positive energy. It will help so much in kicking your cancer. I am glad you feel better!

kathyrnn

*pops head up from Whack-a-mole hole* *peers around*. *waves hi*

Hello ladies. Just popped in to tell you that even though I'm not here often, all my sisters are in my prayers. I'm often lurking here to check up on you.

My life is still chaotic as usual. *sigh*. Cocker, you be pleased to hear that I have good news...I have bad news. The good news is I finally have a roof on my house. The bad news: I've discovered after a month that despite hiring an honest, kind contractor.....it appears he may be having early memory problems (My Dad who had Alzheimer's is sitting up in heaven laughing his ass off.) I also have to call a lawyer today to look into taking action against my insurance company.

Turbo, I wanted to post to both welcome you and second what Radical said. I believe that this thread has done more to save my life (both physically and emotionally) than any medical team. My doctor's would often get peeved when I came to them with accurate, current medical information that I got on here and that they hadn't provided. (They get really embarrassed when they have to admit they don't know some current info that's out there.). I even once knew that my doctor was leaving before she told me. (Someone on here had PM'd me). Really makes them paranoid when they find out how well we are sharing information on here!!! And it keeps them on there toes.

I learned info that may give me a shot at prolonging my life from one of our dear sisters that has passed (OBXK).  My new onc does have a sense of humor about how effective our community is on here.  ("how the hell are are you guys getting all this new info even before we do?")

So welcome Turbo, you've come to exactly the right place.  Hang in there!

I hope to be able to get a chance to check up on y'all but I have to dash.  Mom just spent a week in the hospital and is now readmitted after only 4 days out.  (Part of my life is spent trying to make sure the Nursing Home doesn't manage to do her in.)

I'm alive and still taking every chance to find humor in the absurdities of my life!!!!

Be well Sisters!!!!!!

TifJ

ALHusband-Good info! While I have not done very well with diet and exercise, I have eliminated all parabens from my face and body products. I like the Physicians Formula makeups, but even those you must check the labels as all their products are not paraben free!

Radical2Squared

Kathy,

At first I laughed at your "whack-a-mole" analogy but then I got the urge to put a little hammer to your hammer to your habitat and I didn't think that was very nice of me....I hope you understand my urge, it was only a reflex from years of boardwalk play!

Wanted to tell all you ladies that I made a scrapbook of sorts after Agent told her story. I feel like Canuck with how many people I am running into at different stages of this game. I thought maybe I could share my pictorial journey with others as they come...kind of like we do on the picture forum. I hope to never need it, but reality tells me otherwise.

Nettie1964

Just a thought that's in my head today....I'm scared to let go of the fear of the cancer coming back thinking that if I do it'll take me by surprise. But if I continue to think that it's still here then I'll be ready.

Does that make any sense??

lilyrose53

Nettie,  I actually get what you're saying.  Everyone around me keeps telling me that once I'm finished with rads-I'm home free.  Really??? They know that???  I just smile and nod.  I KNOW this beast can come back...I just sure hope it doesn't!  I am trying to take one day at a time.  Some days are easier than others.  When I discussed this with my MO, he said he doesn't tell people they are 'cured'  he uses the term 'no evidence of disease'.  So I will be hoping to hear him tell me that soon!  But I have to silence that little voice in my head that brings up all the what ifs.  

AL Husband,  Thanks for the info.  I am reading labels a LOT more carefully these days.

Welcome Turbo,  Sorry you found yourself joining this club.  There are lots of great people on here!

Kay,  Can't wait to hear all about your trip!  

I am finally feeling a lot more normal.  Am now 5 weeks PFC. and starting to grow some hair.  Started rads, 8 down, 26 to go.  My skin just started turning pink yesterday.  Neuropathy is still annoying me.

Wishing you all a peaceful evening,  lilyri

NavyMom

Nettie, I totally get what your saying....like if you let your guard down the cancer will find a way back in.  Your not alone.  I felt like that for a long time and sometimes I still have days when I get scared.  But things do get better.  Time is a wonderful thing and eventually you will see cancer in the the rear view mirror and life will be good again....maybe somewhat different, but good.  The so called "new normal"    So Hang in there.

brookezine

I found out today that my tnbc did not respond to chemo. Well, it did during chemo, but it started to regrow at some point and was about the same size when it was remove as first dx. One node was positive as well. I'm scared, what does it mean? 

Luvmydobies

Nettie, I'm the exact same way! I have a meltdown every damn day thinking this beast will get me! It seems like when I relax is when something pops up! I'm still having issues with my "period" and my doctor is like it's not going to be normal coming out of chemopause. But how in the heck do I know when to push for an ultrasound!? I'm thinking all kinds of things like vulva, vaginal, ovarian or uterine mets! I am BRCA negative but that still doesn't make me feel at ease. I still get hung up on having surgery before chemo because I have no idea if the chemo even worked. I wish I would have been more level headed at diagnosis instead of panicky wanting the tumor out ASAP because now I keep thinking if I had chemo first we would've known if it worked by shrinking the tumor. But I can't go back and change things so I have to just hope and pray I made the right choice! Aargh!!!

Radical2Squared

Brooke,

Not sure what it means for your treatment but emotionally, it's a downer...feels like chemo was for nothing. I'm sorry.

Nettie1964

Luvmydobies, I had surgery first also, so I'm in the same boat. Just sucks not knowing.

Plus all these dang pains that I'm told is from treatment. How do they 

brookezine

My MO said she is going to check my tumor markers every three months. I also am trying toget on a clinical trial. I also heard it's all about your immunity so I am starting to eat most vegetarian with no sugars or dairy. Thay's going to be hard, but i would rather eat toliv and enjoy livd than live to eat and cut life short. If that doesn't help then at least I know I did all that I can. I have a 4 year old daughter, so I need to stick around for her. It is a total bummer emotionally, but I'm a planner so I feel better having a plan going forward.

Luvmydobies

I know what you mean Nettie! Sometimes I wish they'd scan then sometimes I'm like no I'll be scared if the scan shows anything. They say there can be false negatives and false positives on scans. 

Brooke, I wish you the best and please keep us posted. XOXO!!

Nettie1964

That's right Luvmydobies!  But with all the dang hurting, it would be nice to know, but I'm told that is "something" shows and it's not definitive, it can lead to a lot of unnecessary testing and stress!  It's one of those "dang if you do, dang if you don't"!  And the learning to live with the fear!

jenjenl

do you think a bone density scan would show cancer?  Or at least say a possible issue due to low density?

lisadi1963

Hello everyone.  I am a  2 year triple negative survivor. The last month I have had breast pain in my opposite breast right behind my nipple. My PCP and I both haven't felt anything but I am still scared. I am set up for a mammo tomorrow morning. My question is, did anyone else have breast pain when they found their cancer. That's how I found it the first time but there was a lump then. 

Thanks everyone!

Lisa