Triple Negative Breast Cancer and Chemotherapy

I'm a triple negative that has tested positive for both BRAC mutations, so basically I'm doomed!  lol  I am so sorry to read about the fear and hopelessness that some of you are having!  None of you are toast and you CAN beat this disease!!!  My first diagnosis was in 1999, had a lumpectomy, rads, AC chemo and they took all my nodes on that side.  I was recently diagnosed with a new cancer in the same breast and had a double mastectomy 2 weeks ago. will be starting chemo soon as part of a study on triple negs  If anyone wants contact info on the study, let me know and I will post it.  Anyway, I just want to say that your mental state in fighting this crap is more important than anything.  It's essential that you KNOW you can beat this and that you keep a sense of humor about it.  Yeah, it's scary, especially for those of us that are genetically programmed before birth to be breast cancer patients, and yeah, the treatments can suck big time, but my motto the first time around was "it beats the other option", which is just giving in to the disease.  This time around my motto is "death is NOT an option".   So hang on ladies for the ride of your lives, but know that at the end you will get off this roller coaster!!!!  You ALL are in my prayers!

Hello TN sisters,

Yes I echo Lilac we are not doomed!   It may seem tough but there is much progress being made and we're finally getting the attention we deserve. Although many Doc. still don't know how to treat us (my former included). We just have to persevere, get educated, ask questions and be up on everything. 

I've just been accepted in a clinical study also for TN's (The PARP inhibitor) Are you in that one Lilac? I'm also BRCA1+, did 8 rounds of AC/T, had lumpectomy then after finding out I was BRAC1+ was going to have bilateral when recurrence struck w/ mets in skin (IBC? & very large tumor)  I did 4 rounds of Ixempra & Xoleda to no avail and had DMX in 12/09.  Now I'm starting Carbo & Gemz in the PARP study today. My bc is still localized Amen but it has indeed been a battle. (Not to mention getting approved by my ins & study).

God willing the protocal and standard of treatment for all TN's will change. The PARP inhibitor may be the key. It fractures the single strand DNA for replication (We gene positive folks have strong PARP enzymes for DNA reproduction).

BTW, I'm also having the Oooph. I was to have it this month but didn't want to do anything to void me from the study.

Like my pastor has said, "This too shall pass". 

Stay strong sisters.

God Bless,

Jeannine

THanks to all who have found the time to talk to me.  I coach high school girls soccer in Iowa. (-18 degrees with wind chill today!)  Right now we are battling with admin due to evey school in $ crunches to even have assistant coaches! I built this program from the bottom up.  It will be hard to step away.  Not sure what I will be advised, medically, about timing of my chemo and this situation.  As of right now, they were watiing for all the info before responding to my questions before.  I know that the weather and kids and etc.. may be a risk for me during chemo.  I'm partially there, mentally, to step aside, but I don't have a replacement yet.  I work pt as a office mgr for my husbands real estate office, so not being there during the day is doable.

Im recovering from my mastectomy pretty well - had a bout w/stomach pains - stress related and/or codine related - my family doc helped there, but feeling much better today.  Get all my test results tomorrow.  Scared, but ready to find out what's ahead.  Need to know so I can make decisions. 

I'll keep you posted - Im sure I'll have more questions. THANKS EVERYONE!

And another thing..I'm glad that we tn's are coming together here and supporting each other...we have had alot of support..from people that are farther out..some in the middle and some just starting..let's just stick together

Payton..so much fUN with your kids..I hope freshman year goes well for your son next fall..and your 5th grader too!  We too had a team that took our kids around to various tournaments when they were in grade school. it was a total blast with the kids and parents...not sure who had more fun!    It was kinda of a jolt when the parents weren't in control any more and we had to give them up to the jr. high and high school coaches..sometimes...I think that we may have been better!  HE HE!

Good Morning all!!

I am up and waiting for my oldest to get ou tof the shower, so I can get them breakfast.

Bg6- I still did quite a bit w/ chemo, i had dose dense also. Although I didn't work. I did get up every am and drive my kids to school and I picked them up every day. Went to church, grocery store etc..I did find that smells bothered me alot. kindof like morning sickness. They have some great drugs to help with nausua ( whats up w/ my sp????) I was way to hard headed to take them at 1st because I didnt want anymore crap in my body. I learned quickly and took the drugs.

Thinking of you today.

Yeah Titan parents make the best coaches. Its hard because I have them doubled now, so 2 sets of coaches. Although the 5th grade set of coaches work together and compare notes so they are on the same page.Results an un defeated team. I am so grateful I found you not only do you get the TN but you get the basketball. My Dad used to say I was pushing them too hard. PLZ!! Like I said my oldest is in the shower not up at 4am shooting free throws..

I will check in after the biopsy..

Payton..when do you go back for your results?  Monday..I hope..or Friday would be better?  My son is home from school for spring break so I'm washing socks..and a few other things!  I don't mind...My dh and I are going away for the day and night tomorrow..going to leave the laptop at home...you all have a good couple of days...

I wanted to ask..do any of you.separate your breast cancer time..and the rest of your life?  My time with all of you is very precious to me...and then..when I'm not here...I really try to not think about bc much...it is still there,,kinda...I need both...the working, washing socks, the basketball, the just hanging with my dh and friends..but I have a real need to come on here and just talk and see whatever everyone is doing,,it is very important to me and my mental health... plus I worry about everyone on here..just like you are sitting next to me...

We are going gambling tomorrow!  We are staying the nite at the casino...it will be soo much fun!  

!

It will get back to normal but it takes some time...first you are excited because you are DONE...and  you celebrate for awhile..then reality hits..it's like ok..I'm done..the year from hell is over..what do I do now?  It takes time..but you will do it...it is still a heck of a lot better than taking chemo...I still keep track of how many weeks since my last one,,,29!  But now and then I forget that I used to go to chemo every two weeks on Wednesdays,,now Wednesday are just another day!

Jac999, We are walking beside you on your "journey".  Sherri,  let us know how the Reiki session goes.  I'm going to be looking into Reiki as well.  Titan,  Right now I try to separate the bc from my life.  I try to live as though I have all the time in the world because doing the "this day could be my last" thing is too stressful.  I was dxed with endocervical cancer in October '08 and had a radical hysterectomy which was a difficult recovery, both on account of the surgery and on account of being plunged headlong into menopause overnight.  After a few months it all began to recede in my mind and I started feeling good...until I started feeling fatigued again during the summer of '09.  I was dxed with breast cancer in October '09.  I am just soooo over it.  I think when I'm done with treatment and my post-chemo scans come back clear I am going to be able to leave this behind (aside from subconscious moments of panic that seem to arise of their own accord).  I can't stand the needles and the medicinal smell of tape and band-aids, even swallowing pills, getting my body onto a surgical table to remove my port and do my reconstruction is going to be a struggle after my bilateral masectomy was left with loose ends and I nearly died.  I am going to dissociate myself with the very word "chemo" because it makes me gag to think of it.  I hope I stop back in here to encourage new survivors with how I'm 3 years down the road cancer-free.  I had my 5thTAC yesterday - feeling pretty green even though it was cut 20% because of my winding up in the hospital w/neutropenic fever last time.  My 6th is March18 (I get to celebrate St. Patrick's Day with my children!)  I expect I'll be starting to feel normal by Easter.  And I am going to hit the ground running.  I'm going to lose my chemo weight plus, I'm going to juice and eat my veggies, do yoga, walk like crazy (I miss my walks), meditate. I got the supplies we need to start the epic vegetable garden for the kids in the backyard.   I'm just not feeling up to anything these days.  I'm sorry I'm so whiney.  I'm off to start a load of laundry.  I'm thinking of you, Payton...

Hope you are having a great weekend Titan.

I get my results on TUesday at the latest. My onc is on call this weekend and I am friends with his nurse. She told me IF the get the results in sooner she will let me know. Either way will be fine with me..boys are gone as of 5.3o tonight and return Sun evening, if I have to wait til Tuesday they will be at school. So if I need to dance or cry I will be able to do that and than carry on.

In response to your other question when I am not on the computer I have what I think is a normal life. I take care of my boys, dog, house, I love to laugh and can find the humor in just about anything. Right now I am on this board more than normal for 2 reasons..The first being I really like you guys and the 2nd is with my recent scare I didn't tell anyone except my parents, my aunt and 1 friend who isn't in my close circle. When I got my dx the 1st time I was like an overnight lottery winner. I had 3 phones ringing at all hours. People wouldn't leave me alone. Over time ALL those extras the DRAMA MAMAS slowly faded away..I knew it would happen but still hurt to realize what I knew was true. They just wanted the scoop. So once again I am alone. Don't get me wrong I like my alone time and crave it at moments.

So to wrap it up I can post here or just chose to read and learn. If I can't get on the computer for a few days my heart won't break but I still think of you all. I don't live my life with one foot in the grave ( what kind of example would that be for my boys???) Even if my results come back bad I will trugde on thru..I mean come on I got 2 boys you think cancer scares me??? Okay yes, sometimes it does..but I sound tough right.

You all are the best!!

Justpayton - sending positive vibes and hugs your way!! Keep us posted!

Titan- I'm so envious - have a FABULOUS time away, and may Lady Luck be with you!

Sugar -  Hang in there! "Normal" life (and laundry!) really does seem to push its way to the forefront of our minds as we get farther out.  

Violet -  ugh - hang in there!! Hopefully this cycle will be much smoother than the last for you!  I had to laugh (well not laugh, laugh, but you know...) about you feeling green and looking forward to your last treatment on St Pats day!  Green beer is all good, but I think you're taking it too far!   Of course I'm teasing - hope you WON'T be green for St. Pats, and even if you are - you'll see the light at the end of the chemo tunnel!

Jac999- so sorry you're here.  It stinks the big one, but you can do this.  Please stick around!  We get it here.  I'm with you - my only hospital experience before this was during childbirth! Since you're new here, I just have  to refer you to my favorite thread on this whole board, even though I've never even posted on it!  Check out THIS THREAD 

Being triple negative doesn't mean you have a death sentence but knowing the facts about the type of cancer is important and yes there is a lot of info out there. Dr. Sledge in Indianapolis. His group studies TNBC. I see one of his group Dr. Brian Schneider. Saw him this month and yes, the size and lymph node status is not indicative of a great prognosis. TNBC is well documented as not spreading locally. It spreads distally and to soft tissue. I am not trying to scare anyone or give misinformation. I'm a registered nurse, have hung plenty of chemo and am a TNBC survivor myself. I am sharing information as are all of us here. I, personally like to collect as much data as possible from professional, peer-reviewed journals and physician's journals as well. I am not a loose cannon trying to lay death and dismay at anyone's doorstep. The facts are the facts. Good luck to one and all you are all in my prayers.

Hey Titan!! How was your weekend?

I am getting ready to get my guys from their dads house. Still no word on my results..I didn't think I would hear but there is always hope.

I am guilty of internet searching, infact I have my own research project going on. I have kept notes and a journal. I compare studies, dates etc..I know what I am up againest. I gotta go for now. I am so not in the right frame of mind for this right now.

Hope you all are having a great weekend

How fun w/ the high school games..I am pretty sure we have that too. I didn't grow uo in Indiana so I have no ties to any high school. Maybe I will check into that.

My oldest is bummed because Robbie Hummel is out for Purdue, so sad. Won't be the same with out him. Although I am more of a Nova fan. Do you watch much of the March Madness? That was the only good thing about tx last year. I felt like crap and could veg on the couch and watch all the b-ball my heart desired w/o guilt!!!

How nice for your son. Seems like the younger guys always enjoy when someone closer to their age returns to help.

Still waiting...waiting...waiting...I will know tomorrow for sure. I almost want to call the lab and ask. Why cant they just tell me???they are my results..

Already walked the dog..started more laundry and now going mop...

I'm a Buckeye fan but I still feel horrible about Robbie Hummel...not sure how Purdue without him. 

I had my lumpectomy last year on March 20 which is when OSU had their tournament game...there were several overtimes...I don't think it was over until after 1:00 am..I was awake the whole time...the drugs pumped me up rather than put me to sleep...I was just glad that there was something good to watch that late at night!  

Watching March madness this year will be a better thing!

I think maybe too much information can be a bad thing...it can drive you crazy...there is a very good article on here that has alot of information...plus what I can get from my onc. and my co-worker who had tn 6 years ago, no scans, 4 ACs, that is all....I think I will let it go at that...like I said it can drive you nuts.....