Calling all TNs

SunnyCoconut

Heidi and Tracie - I love both shirts!

Lynn18

Suze35:  I am glad to hear that news about Avastin.  I also have heard it may specifically benefit triple negatives.  We need more treatments like that.  That's why I was glad to see that trial over at the TNBC foundation site.

I love those shirts and I like the avatars on here.  Tiffany, are those your children, they are beautiful.  And I like Heidi's and tracie's avatars, and SunnyCoconut, yours makes me want to go to Florida for a Pina Colada. 

bak94

I love you gals! You always know how to make me smile!

Thanks for the info suze. your kids sound amazing.

Stupidboob

Hey Gang,
I have been reading for a few days here off and on and decided to post tonight.   I am newly diagnosed and I am scared to death.   A little about me, I am agoraphobic and I have a MAJOR medicine phobia.  I have had my surgery and will be starting treatment next week..............however, I am not sure I can handle it or if it is worth it with all I have been reading.   I don't want to die but my goodness sounds like the treatment will get me there.   I have read so many stories about people dying and or having really bad reactions on their first treatment.  Well, now that just makes me want to hurry on down to get started .  Wondering if alternative methods would work.  I am terrified and just don't know what to do.

Was just going to go with that the oncologist said and then I get on here and read that the Taxol would be better to get first but he wants me started on the A/Cytoxan regimine.  When does it ever stop being confusing........nothing ever seems like the right answer.

Also my oncologist requires we get the Neulasta and the side-effects are horrible.   How many of you are on this and how many are required to get it.

jenn3

It's been a while, but I just wanted to pop in to say hello.

My treatments are going as expected.  The Gemzar/Carbo is wearing me down and running my blood counts to the ground.  I am hoping that when I have my scans in June we see results, no progression would be nice.

Jenn

bak94

stupidboob, you can do this. Everyone is different, but ac is very doable. I did ask my mo about the taxol first (I have had 2 ac already) and he said it is still in trial phase? Although it seems it is standard now for other big cancer centers. The first treatment is scary, but the nurse will be right by you and ready in case of a bad reaction, plus they give you pre meds to prevent a bad reaction. As far as the neulasta, I have had very minor side effects from it. First treatment I had 1 neulasta and my counts still tanked so they gave me 3 neupogen shots 3 days in a row. By the last shot I had pain in my lower back and couldn't sleep very well one night, but then it got better. The second time my counts did not tank, probably because of all the shots from last time and I have had no side affects from the neulasta shot this time so far (knock on wood). It's not fun, sometimes not easy, but it is doable, you can do this, it is worth it to do it.

alexanjb

StupidBoob, you can do this.  You can.  I had AC first and yes with Nuelasta shots.  Once I stopped trying to be conservative with the Ativan it wasn't so bad.  I just slept a lot.  Don't try to have AC on an empty stomach.  I tried to eat very lightly on the theory that if I started vomiting there wouldn't be much.  I found it was kind of like morning sickness and I was better off not letting my stomach be empty.  You will get cold during the treatment from the fluid going in.  They give you blankets but you might want to bring cozy socks and a hoodie so you can have your arms free.  The Taxol wasn't bad.  I had a little peripheal nueropathy and when I told them before treatment they decided to send me home without the treatment and reduced the dose a bit for the next time.  Just communicate with your team.  Mine was very responsive to any and all side effects.  They watch you like hawks for any allergic reaction and they have the meds they need to counteract a reaction right next to you.  I said it before and I will say it again.  Trust your team or find a new one.  THEY are the experts.  Don't give in to this lousy disease by not having treatment.  Tell them you are agoraphobic and have a medicine phobia.  You probably won't be the first.  If we felt sure of alternative treatments that's what we ALL would be doing and it wouldn't be the alternate anymore.  Cut it out, poison it, burn it.  Yes, it is barbaric and freaky and scary, but you know what? I know I have done what needed to be done .  And I am convinced I am cancer free. 

bak94

Jenn3-hoping for good scans for you! Sorry your treatment is running you down, hopefully that means it is doing its job and you will get good news. Are you getting platelets or transfusions to help you out?

Here's to no progression, and to regression for your June scans!

Babs37

Stupidboob- I understand you are scared but most of us got through chemo just fine. I'm not telling you it's fun but it's very doable. I started with DD AC and went on to 12 weekly Taxol. My main scare before I started chemo was that I would not feel well enough to take care of my almost 5 years old little boy while doing chemo. But you know what, even if there were days when I had aches and pain from chemo or neupogen shots, I was well enough to take care of my little boy every step of the way. My best advice is try to take it 1 day at a time. Then one treatment at a time. Accept help from family and friends during treatments. You may be suprised how, with everybody's help and support, chemo will go just fine. Best of luck. ((Hugs)) 

Luah

Stupidboob: I did 4 X AC followed by 12 Taxol. It was completely doable! Everyone is different, but for me, I carried on most of my regular activities. I felt a bit fluish for a day or two, and would be a couch potato for a bit, but nothing terrible. I contined to work (I am self-employed). I walked and lifted weights throughout. I continued to ski every weekend. Neulasta was okay. Of course there were some side effects, but they were moderate and easy to manage. Just so you know, there really is a range  of responses. Many women come on here seeking help because they are having a problem, you may not see posts from women who are doing okay, kwim?  I wish you all the best!  

alexanjb

Luah has a good point.  Many of the "survivors" have just moved on and are not posting here.  This may sound cynical but I kind of figure that the insurance companies wouldn't PAY out for these treatments if they weren't beneficial for the most part.

Titan

Stupidboob...sorry but I just have to laugh at your screen name..I hope you aren't offended...but seriously..your name just kinda describes the whole bag of crap..doesn't it?

And hey everyone but I'm gonna go off on a tangent here a little..I think the "Stupidboob" name started me thinking (maybe a bad thing)...but anyway..seriously, how do you ladies that had the lumpectomies really feel about your boobs?  I never really thought much about mine..they were just there and a part of me.....however, when I found the lump I never really saw a reason to chop the whole thing off..I don't see it as an enemy..or trying to kill me...it is what it is..the cancer could have shown up elsewhere..I don't feel like my breasts were sending out signals to attract cancer..it just happened...I did the lumpectomy because I didn't want to go through all the surgery, recon ect...I really respect the women that DID do that...they are much braver and stronger than I am.

Welcome to the club Umater...

And the Mom thing..Suze your kids sound adorable!   They can really get you through the day can't they..your little girl..well she just seems to love her Mommy alot...I love it...

Stupidboob

thanks ladies..............means alot that you took time to write.  I will try to respond tomorrow, but I think for tonight I am going to have to go to bed, as I have had a VERY emotional evening.   Thanks again

Titan

Good Night Stupidboob...try to sleep well ok??? I know it is hard with everything going through your mind..

Heidi..I meant to tell you that I went to a banquet last night and there was this Jungle guy there..His Mom rescued "wild" animals like you do.(I thought about you the whole time)..we saw a chinchilla, box turtles, an albino skunk, an alligator and alot of snakes..I did OK until he brought out the snakes..My mom and I were cowering in the corner...I told her I remembered her with the hatchet..and she said.."Oh no..it wasn't a hatchet..it was a tool I used to pound them"  My mom is like 5 ft 2 now and a little thing..it cracks me up. I know that what she did probably wasn't a good thing...but it was right to her at the time.

riley702

My Mom's weapon of choice against snakes was a hoe. She was terrified of them, but was more afraid of us getting bitten by one. I think she came close to passing out the day we found and carried home a green snake.

OBXK

Hello,

I was dx with TN in 12/10. I had estrogen positive IDC seven years ago. Finished 5 rounds of T/C - had to stop at 5 due to neuropathy. I go back to the onco in 30 days. My ca 27-29 was normal at dx, but it has been out of range since starting treatment, which is causing my onco concern. I just turned 50, May 2. I am married, and have 2 boys 11 & 16.

MBJ

OBXK:  Hi there.  So sorry you are having a second round of BC--that just sucks.  We share the same birthday though I am a little bit older.  I had 6 rounds of TC and had to stop the last Taxotere because I had a n alergic reaction.  My ca was normal, too, at dx.  Glad you found us here. 

Stupidboob:  There is nothing I can add accept that I took my Neulasta shots in the belly and they never gave me any side effects.  I took Mag07 for constipation and it made all of my chemos much easier to deal with.  Most of us do fine--but chemo is the only weapon for TN--surgery and alternatives are not enough--I was doing all sorts of alternative things and got no response!!!  Chemo was the only thing that worked and surgery took out the remains.  You can do this!

mccrimmon324

Stupidboob, first I have to say that may be the best screen name I've ever heard.  It made me laugh.  Thank you, don't do enough of that lately.  I'm afraid I can't offer you any advice on SE's as I haven't started my treatment either but I just wanted to reinforce what others are saying.  We are TN's and Chemo seems to be our best bet.  We were diagnosed around the same time. Onco wants to start me in 2 weeks, I just want to start and get this over with.  My onc wants to do TAC x 6 for me and from what I've heard it gonna be rough but I don't see any other choice.  I've been told the waiting is the hardest part.  Please try to go thru the treatment before trying alternatives, not sure who said it above but if they worked they would be the norm and not an alternative.  Everyone says 6 months is not a very long time when compared to the rest of your life and I'll agree on that.

.

Kymn

Hi ladies, stretching and emerging from my chemo induced fog...oh my what a round. Thanks for all your love and support the one time i did pop on this go around.  I know I said I didnt want to finish this treatment out but Suze35 your posts have conviced me other wise. I will think of you when I want to give up, I can do this, I too adore and cherish my kids and enjoy them sooo much I have to plug along.

Stoopidboob I am so sorry you are so scared right now, I know the emotions are so hard and so draining and so all consuming, I promise once you get started you will have good days too it doesnt seem like it at the begiinning but they do happen and you really appreciate them. Its funny you named yours stupid boob I refer to mine with my DH as SHITTY TITTY lol.

Ok just wanted to let you all know that I am back big girl panties pulled back up and heading out to do my taxes lol

Hugs to you all

Kymn

Suze35

Kymn - I know how much you adore your children - ((hugs)).  It is so hard when you are in the worst of it to see that things will be better, but I promise you they will.  We all can attest to that.  You are doing a fantastic job - there is no right way to get through chemo - and when it is over, you will have a lifetime to hug those babies.  And may I just say, SHITTY TITTY - INSPIRED!  WINNING! 

Stoopidboob - it is a scary time, and a scary diagnosis.  It must be so hard to deal with other issues that affect your treatment as well.  But as we've all said, chemo is DOABLE.  I really had no adverse affects at all - no heart issues, no neuropathy, no nail problems.  I just felt like crap for 5 months.  And even that was well controlled.  Unfortunately, this disease is just not manageable through altnerative methods.  Sit down and have a heart to heart with your Oncologist - explain your fears, perhaps talk with a therapist.  Hopefully your medical team can work with you to limit the fear and anxiety you will face.  Hugs to you.

OBXK - so sorry you had to join us here.  Hopefully we can answer your questions and give you the support you need.

~~~~~~~~~

So now all I can notice is mild discomfort on my right side.  Stupid psychosomatic crap!  I am going to have an MRI scheduled asap.  Hopefully it will ease my mind...but I'm expecting the worst just in case.

On a fun note - I'm going to check out a 1971 MG Midget this weekend!  It is my dream car from childhood, and well, I'm gonna get one.  It is the perfect season for it, and I can tool around sharing a ride with my kids (properly restrained of course!).  Hoping to find one by the end of June to really get my summer's worth.

tracie23

I love the name stupidboob and kymn I love shitty titty...

alexanjb

It's not catchy but before my mx I would look in the mirror at my boob and say YOU TRAITOR YOU ARE HISTORY.

tracie23

I would call them my killer B's

Sugar77

I refer to mine as good boob and bad boob!

ksmatthews

I am new to this whole forum thing, but I think it is great that so many have nicknames.  I never thought of mine like that. lol

Titan

OMG..here we are are..Kymn is shitty titty, we have stupid boob...we are all going through hell..or have been there..(but we still can remember it)..and I'm sitting here smiling at your posts.

All we need is for Heidi to come on here with her potty mouth and we are good to go..ha ha.

Kymn..glad you are sticking with the chemo even though you feel like crap and it sucks...how many more to go? You are pretty close to being done aren't you...we are totally going to throw a cyber party when you are done...

riley702

Hmm, I don't remember naming the bad boob, but do remember telling it, "Trying to kill me? You are so gone. And your little friend, too, before she gets any bright ideas!" During chemo, I would also tell the tumor on a daily basis to "Die, sucker!" and chortle with delight as I could feel it getter smaller and softer. Not sure how sane that was, but it made me feel better and also get into a frame of mind to beat it.

blondelawyer

Hi there.  I am new to the board and wanted to introduce myself.  I was diagnosed with IDC on April 13, 2011.  My husband died on Nov. 2, 2010, and my dx came on what would have been his 34th birthday--talk about a bad day!  I'm 33 years old.  I was taking time off to grieve and was planning to travel this summer, but instead will get to spend it getting chemo.  My tumor (whose name is Gertruide) is on the large size--5-6 cm and so I am doing neo-adjuvant chemo to shrink it down before surgery.  Triple negative, grade 3.  I had my first dose of taxol on Monday (May 23rd) and have 11 more, followed by 4 doses of AC.  I'm also taking an experimental drug as part of the iSpy clinical trial.

This first dose of taxol has been rough.  My onocologist said that most people tolerate it well so I think that I was expecting it to be easier.  I felt amazing the first day after chemo--from the steriods, but then crappy for the next two days.  I had a emotional breakdown yesterday worrying about being able to get through all of this and just missing my husband so much.  Today I have pretty much stayed in bed except for to take the dog for little walks and to go to the darn bathroom (my side effects are of the bathroom variety).

riley702

So sorry you have to be a part of our group, but glad you've found us! I did a neoadjuvant clinical trial, too. That shrank it from 4.5 cm to 1.1 cm at mastectomy. And I'm so sorry this has come on the heels of losing your husband, and finding out on his birthday. Seriously, world? WTF?

Don't worry about not being Wonder Woman. Sleep as much as you are able. The steroid bursts with each dose of chemo made me crazy hyped up, and I frequently had trouble getting enough rest. I was told the AC would be rougher than the Taxotere, but it was the opposite for me. I think everyone's reactions and SEs vary quite a bit. Just remember to hydrate, hydrate, hydrate! That helped the most for me, regarding SEs.

Lynn18

blondelawyer:  I think you need a hug.  ((hug))   I am sorry you are joining us this way.  It sounds like neoadjuvant chemo is the right choice for you.  Neat that you are in a clinical trial also.  Many of us here have been through the same chemo as you, and we'll be here to help you along.