Calling all TNs

tracie23

kymn, I hope you are doing ok... I can't imagine going back to work during chemo. I do know about the wobbly colt legs... I am thinking of you

AimeeMac

blondelawyer,

you have a PM from me. thinking of you today,

Aimee

rella40

Kimn, Don't let my story scare you, we all have it in us to fight through the rough stuff.  I think you will be fine, you are doing the radiation.  My error was not making them go that last step.  I have had more than one error made in my treatment, maybe that's why God has allowed me to survive this long.  They tell me at my treatment center that I am far from over, so I am going with that. Having said that, can anyone give me a heads up on the Xeloda SEs?  I am about to take day 2 dose 2, not having anything so far.... 

Anonymous

Kymn- don't let rella's story scare you. In fact, I started to write a response to her saying I actually found her story comforting, but then deleted it because I thought it might be misinterpreted.

The reason I found it to be that way was because I finally had a logical explanation for someone having a recurrence with zero nodes that I could understand: she didn't have rads afterwards. 

Of course, (and this is important to not misunderstand) that may not have been the *actual* reason, but it helped me to realize that those who do recur  may do so for reasons we are not aware of from the limited information we may have regarding their situation (such as LVI, different response to chemo, BRCA status, lack of rads or clear margins, etc.)

MBJ

Heidi:  I so agree with you!  I just said almost exactly the same thing to someone else on another thread.  There are so many reasons for recurrence!!

Suze35

Kimn - Heidi and MBJ are so right. There are so many factors involved, we just don't know what particular one is in play. I found Rella's story inspirational because it gives me hope in the face of my bad odds that I still can have many years left, but it is important to remember that we are all different, and I believe our cancer is also. But the odds are on your side, very much so, and you can BEAT this!!

OBXK

Blondelawyer - I hope you wake up from this nightmare soon. It can't possibly feel like reality. I'm sorry the taxol was hard for you. The onco's never really tell you how bad it may be - possibly in fear, that we will not show up! You'll figure out things that help you tolerate it, along the way. Chemo gives me wicked headaches, so I take a Vicodin and nausea pill every 4 hours until I wake up without feeling like I have an ice pick stuck in my head.



I'm new here too, if you need an ear - bcwar1@yahoo.com

Wishing you well... Karen

MBJ

OBXK:  Welcome to the board.  Are you still in the middle of TC or are you done?

Titan

Hi Aimee!  My daughter's name is spelled the same way!  I love that name..it means "beloved friend"...

Titan

Rella..thanks so much for coming on here and sharing your story with us...

Great discussion here.....

Seems to me..with TN..it's better to have the most treatment possible...and I think most of us have done everything we can...

Kymn..you are doing everything you can..hold on to that ok? 

AimeeMac

Hi Titan, glad you like my name, I was named after my grandfather, who was a French Canadian artist named Aime.

I have not really posted here but have been reading. Still struggling with the whole TN diagnosis. Tomorrow is my first post-treatment mammogram, and I'm a little freaked out.

rella40

Hi Titan, Thanks for the welcome from you and all.  I am sorry if I scared anyone with my story, that was never my intent.  I just wanted women to know that no matter what, don't give up.  There are so many options out there now, if one drug doesn't work, there are others.  When I was first diagnosed, there wasn't really anything said about it being TN, it wasn't until my first recurrance that I was even aware.  Just remember, there are lots of options.

Anonymous

Kymn

Sorry Rella I didnt mean to make you feel bad about your post, I am so glad you came and posted and the ladies are right it is great how much treatment options we have compared to before . I was just holding on tightly to the fact that I was stage 1 and no nodes and in denial or trying to be lol that it couldnt come back. The whole TNBC things sucks thats just what it comes down to....well BC all together just sucks we are certtianly not the only sisters out there who have to deal with reaccurance. Looking forward to getting to know you better

Hugs Kymn

BernieEllen

Hi to everyone, no teeth, no hair.  3rd round of chemo tomorrow.  Little girl at work the other day said my face had gone all nice and soft. I don't have any children but I work in a garden centre, pet shop and it's comments like that from the little ones that keep me going.

blondelawyer

OBXK:  Thanks.  It does feel surreal and I keep hoping that I will wake up and find that it is just a horribly long and intense nightmare.  But unfortunately it isn't. I am working to just take it one day at a time (well, most days it is actually more like 10 minutes at a time).  As cliche as that sounds, it is about the only thing that works some days.  I am also writing, which is therapeutic.  So...I'll get through it!

 Are you from NC (because of OBX in your name).  We used to live there and loved to visit the outer banks.  I really miss it!

Aimee:  Thanks for the PM!  It's nice to hear from neighbors! 

kathyrnn

Hi Everyone,

I just found this site and haven't gotten a chance to read all the posts, but I'll be back soon to get to know you all.

I am newly diagnosed with triple negative, so just call me Newbie!

I'm 57 years old.  I just spent the last 6 months in the most unbelivable hellish pain, which they finally figured out was a herniated disc that had completely compressed my sciatic nerve. (I've lived with a back injury for 22 plus years, and have never felt pain like that.  It was so bad that I lost 25 pounds in a month from the pain)

Two weeks after my spinal surgery, (my sense of humor is getting a wee bit strained) I went for my mammogram on 5/3/11.  In less than 29 days, I've been diagnosed, seen by a team at Dana Farber/ Boston, had all my necessary tests and start Chemo on 6/1/11. (That's some pretty fast phenomenal medical care!)

They believe it is early stage (excuse me while I throw my hissy fit *stomps feet*) but I'm not being staged till I finish Chemo. (They are leaving the tumors in to see if they shrink during the chemo).  They will check the lymph nodes when they go in to get the tumors in 5 months. I will get the results of my CAT scans, etc before my first chemo.

I'm in an experimental study, so I won't know till Wednesday exactly which drugs I will be getting.

I'm a nurse, but apparently I'm a pretty dumb assed one, lol.  I hadn't had a chance to do any research until tonight on exactly what Triple Negative means to long term survival rates. On top of being TN, I also apparently have some rare-assed sub-type of IDCA, which I can find very little information on (Really God, with the odds of this type, wouldn't have really have been easier to just let me win the lottery?).  After doing some reading tonight, I admit to being much more scared.

I may not be on to much, because I'm caring for an ill elderly mother, and don't have computer access at her home (and that may be changing real fast, I NEED MY INTERNET!) but I'm very glad to have found this group.

Lynn18

kathrynn: welcome, I also had neoadjuvant chemo also.   A lot of us here have, so we can answer questions you may have.

rella40:  Thanks for telling your story, I found it very inspiring.  I am wondering if the term "triple negative" was not even in use when you were first diagnosed.

OBXK:  Welcome!

Suze35:  I can't wait to see a pic of your new car! 

My son graduated from high school this weekend and all went well until I fell apart and had a major meltdown this afternoon.  With all my in-laws here.  I think it was building up all year.  Oh well, tomorrow is another day. 

rella40

Good morning ladies--I am really enjoying this site!  I can hear and relate to sooo many things I am hearing, it really does help to hear others are feeling the same way I am.  My latest scans really knocked me off my feet!  I really felt I was going to have good scans, and it just didn't work out.  I AM a fighter, but has been a LONG journey, and it just wasn't how I pictured this summer. But I will do the chemo, and whatever else the doctors ask of me, I am holding out for the cure!!!!  Kimn, I would love to get to know you better, too, and hold on to that hope and good feeling about your prognosis, you are doing all the right things!! Stay positive, positive, positive!! And when you can't be positive, take a day, a DAY, to have a pity party, cry, do whatever to get it out, then pick yourself back up and put those fighting gloves back on!  Aimee, hugs and prayers for you today, stay strong!!

Towny

Just wanted to pipe in ... PARP in hibitors!!! are a new drug!! So ask your docs... where ever you are. Dana Farber def. should have that stuff. Also anyone near Marga Massey should check out her web site... she does stuff in New Orleans as well as South Carolina!! Great Surgeron.. Lots of info about her on this website.

Remember to ask about lymphadema and get prepared for that before surgery. No matter what the docs say get the info.. Almost all of us TN have chemo before to shrink the fast growing monster.. it usually works very well. The PARPs can be used before or after!! So ask.. ask.. ask..

Make sure you ask for the CTC blood work Circulating Tumor Cells or something like that. Just say CTC and they SHOULD KNOW WHAT IT IS. IT IS A NEW BLOOD TEST ALL THE BIG DOGS ARE USING.. VERY ACURATE... Good luck to all. TN is scary but all of it is doable!!!

Educate yourself. Noreen Fraser web site Stand up for Cancer has info.. Triple Step for the cure as well. Lots of these people will answer questions for you.. Dr. Melind Telli is an expert TN she is in CA.. she will answer your e mails!! Very nice!!! She has been working with PARPs for a while now!!

Anonymous

Parp? CTC? What's new about those? Have I missed something?

Suze35

kathrynn - welcome, although I am very sorry you are here.  Neo-adjuvant is becoming more common, especially with TN.  It is a good way to judge response to chemo, and gives your doctors the chance to switch things up if the first isn't working.

Lynn - congrats on your son graduating!  You must be so proud.  I totally understand the meltdown, it must have been building for awhile.  Be gentle with yourself, and let them come as they come.

rella40 - I'm sorry to hear about the less-than-good scans.  That sucks!  I hope your next round of chemo treats you well.

Heidi - I believe Towny is recommending that we TNs look for a PARP inhibitor trial to participate in, as they are showing some promise for us, although more so for BRCA+.  They are hard to come by unfortunately.  The CTC is an experimental test that a few hospitals are using - Mass General is one - that can locate tumor cells in the blood.  They are hoping that it can prove useful for determining which chemos work, if there are extra cancer cells floating around that can go metastatic, etc.  I'm on the fence about that one - I don't really want to know about CTCs if I'm not Stage IV (head in the sand).  Also, it has been suggested that everyone has cancer cells floating around, but not everyone gets cancer.  The CTC can lead to overtreatment possibly.  Anywho...

~~~

Guys, I'm getting nervous and scared about my liver MRI.  I had sharp twinges all weekend, and I feel like I'm a little bloated and tender in the area, though that could be from me poking at it a lot.  If I didn't have cancer, I would say gallbladder, especially as it seems to start after eating.  But ugh.  I'm hoping they will schedule it for this afternoon or tomorrow, but am waiting to hear back.  I'm trying to keep busy.

Moving forward with our car purchase!  Have a mechanic going to check it out this week, and as long as there is nothing catastrophic with the engine, I'll have it this weekend!  I'll definitely post pictures!  It has been a nice diversion, and something DH and I will enjoy together for a little alone time .  Plus he likes to work on cars, yay!

Luah

Suze, deep breaths. As my onc says, we can still get all those ordinary (non-cancer) things after BC... just good to stay on top of symptoms, which you are.  Also, I don't know about you but while waiting for scans and results from scans, my head did a real number on my body, I felt all kinds of tweaks and twinges... and they mysteriously went away after the all-clear. Fingers crossed it's the same with you.

Suze35

Luah, thanks.  I'm trying to remember that these things can overlap, it just sucks that the symptoms are often the same!

I'm meeting with my doctor tomorrow AM and she'll check my liver functions and order an MRI.  She is also working my insurance company over for the Avastin, should have an answer from them by the morning.  She asked for 12 weeks to see if it helps, and if not, we can stop it. 

She told me "pray for gallbladder problems!" - yea, cause I'm hoping for liver mets.  Sheesh!  I do love my doctor though.

Anonymous

Suze- yep, that's what I had heard also wrt Parp and CTC. So, nothing "new" per se.

Good luck with the MRI... always something to think/stress about with this disease.

Fighter_34

Hi All:

No pains other than an occasionally stress headache, but I do worry about the what if.

Argh, but such is life.

Kymn

every pain I know have freaks me out. Can cacer grow while doing chemo???

MBJ

Kymn:  Some cancers can respond and then start to aggressively grow again, though this is usually not the case in many of us.  This is why the onc & bs keeps such a very close eye on us. I think it is very important to report anything that seems out of the ordinary or that is new.  Mine was continually checked and it kept getting smaller.  This is what we all hope for--a good response.

Titan

Kymn..you are having the neulasta shot right?..or if you aren't..chemo can cause alot of different aches and pains...taxol but not AC caused alot of leg pain and arm/shoulder pain..also pains in my abdomen...I would just ache..it was like having the flu...my skin hurt...it wasn't unbearable..it was just there...

Suze..praying for gall bladder problems for you..or can I say this out loud..maybe just GAS????

So..this CTC test..how do we go about getting it?

Titan

Oh and hey to you Kathryn..glad you joined us..

Research on TN survival..seriously..I haven't found much research on this...on this board it states we have pretty much the same surival rate as the positives do..Our issues are the fact that we reoccur earlier..oh yeah and we all know that it's not good for us if we do that...facts are facts so we all need to just hang in there and hope for the best.