Calling all TNs

christina1961

Hi Hope! So glad to hear from you! I hope the rbc transfusions are helping you feel better.  Sending you a PM.

Inmate has posted on facebook recently.

Love,

Christina

kidsandlabs

Finished chemo, just need to get through the next few days. BRCA Testing next month. Fingers crossed for it!

TifJ

I am so glad I popped in today- Hello Hope60 and Fighter! Good to "see" you both.

Hope60- sorry chemo is whipping you- I too hope the transfusions help. Is everything back to normal for you (whatever that may be!) after Sandy hit NYC? I understand there is still a mountain of problems both in NY and NJ.

jenjenl

Finished round 2 of chemo today 1/3 complete.  The modifications they made have helped tremendously (fluids daily for 4 days and percocet for the bone pain) - I can't believe the difference.  I go back to work (working from home for the majority of this year) this monday and am quite excited to socialize and talk about more than cancer.  It's gonna be great.

Hopex3

Catwhispurr ..I asked my onc about the Herceptin and your level of her2 has to be below a 1 and I am a 1+ she said. She said I was too high of a "negative" to go on Herceptin.

She does have TN patients that were able to go on it but not for me.

So you ladies may want to ask your onc your numbers.

Luah

Hope60 - So nice to hear from you. Thanks for stopping in, with all that you've got going on.

liv - a few thoughts. Many of us had adjuvent chemo and have no idea if the chemo regimen worked or not, yet we are (so far, knock wood) doing fine. I can only imagine the anxiety of knowing the chemo didn't work, or stopped working - but the good thing about neoadjuvent is that they/you can move on to something else. Second, whether the stats are 75%, 85% or 90% for 5-year recurrence free survival, at the end of the day it comes down to 100% or 0% for each of us. We're fine or we're not. Although I'm a bit of a research junkie, I've also come to accept that it's a bit of a crap shoot. And speaking of that, I know a woman who had a 10 cm tumour, 26/27 nodes positive... she was diagnosed about a year before me and is still doing fine. Wishing you a similar outcome... 

liv-

thx luah, yes the bottom line... its all or nothing...100% -or 0% so true.

a search junkie,  we could hold our own clinical trials, if we did it on all the members on here we could tell the medicos a thing or two...you can do the research and ill process it for you.

encouraging 26/27 and 10 cm going strong..whoop whoop.

xx

EnglishRose75

Kelley41, thanks for posting.  It's always encouraging for people like me who are closer to diagnosis to hear positive news from those who are further out.  Congratulations.

Luah, such sensible words as always.  Thank you.

Nuke number 7 of 20 today.  Rads has been an eventful process so far.  They are expecting an inch or two of snow here over the weekend and the excitement is building.  Would make all you Canadians and New Englanders laugh. 

My mind has moved on from chemo but my body is lagging behind.  Feel like an old lady at the age of 37!

Cocker_Spaniel

Todays giggle

A man escapes from prison where he has been for 15 years. He breaks into a house to look for money and guns and finds a young couple in bed. He orders the guy out of bed and ties him to a chair, while tying the girl to the bed he gets on top of her, kisses her neck, then gets up and goes into the bathroom. While he's in there, the husband tells his wife: "Listen, this guy's an escaped convict, look at his clothes! He probably spent lots of time in jail and hasn't seen a woman in years. I saw how he kissed your neck." If he wants sex, don't resist, don't complain, do whatever he tells you. Satisfy him no matter how much he nauseates you. This guy is probably very dangerous. If he gets angry, he'll kill us. Be strong, honey. I love you." To which his wife responds: "He wasn't kissing my neck. He wwas whispering in my ear. He told me he was gay, thought you were cute, and asked me if we had any vaseline. I told him it was in the bathroom. Be strong honey. I love you too!!"

OBXK

Hope60- good to see you. I hope the transfusions give you the energy you need. This cocktail can sure flatten you. Wishing you all the best.

Tazzy

Cocker:  ha ha ha ha ha !!  Good one.

Hugs to all

Wrenwood47

I have a somewhat odd question that I am hoping someone can answer. Men also get breast cancer and since their bodies do not produce estrogen, are they considered TNs?

liv-

good question wrenwood i have no idea but would also like to know. they do carry the brca gene.

xx

Cocker_Spaniel

Wren and Liv

Men can and do get triple negative breast cancer and overall they have a poorer prognosis than receptor positive BC in men so mainly they have the same prognosis as us.

Annie 

liv-

annie - that joke was just awful -  and i loved it, just told my friend laughing my head off.

& thx for reply re tnbc men.

xx

Hopex3

Annie...thanks for the jokes. Told the one about the sunburn today. Got a lot of laughs.

swiftbird

Hi ladies

I check in and lurk these days but try to keep tabs. Especially on Inmate and Minxie these days. Prayers to all going thru this.



Just about 3 years ago (I think tomorrow) I was diagnosed and, so far so good, no sign on return. I feel like I've lived last 2+ years in a low level of fear and resignation, and now it's kicking in that I better snap out it!



Kidsanslabs - yay you're done. Hang in there! I had carboplatin and taxotere. The last round was toughest for sure. Was sp aick of gatorade! I rebounded pretty quick tho, and was soooo happy when hair started to sprout. My eyelashes came back fast.



Jenjenl - I also worked thru treatments. I didn't necessarily have to but it was more often, for me, a welcome distraction a few days after infusions and some stir craziness!



Enjoy your weekend sisters!

liv-

congratulations swiftbird 3years whoop whoop.

yep your living and alive, dont let the critter dampen your living unless need be.

life is to be lived~!

xx

EnglishRose75

swiftbird, congratulations!

Lauren15

Hi all - Hope everyone is having a great weekend!  I had my first TAC treatment on Thursday and am plugging away.  I've had a few episodes, so I know I need my anti-nausea meds.  My bones and teeth ache even though I'm taking claritan; however, the worst of everything is this stupid port.  I had it put in on Wednesday, and IT'S KILLING ME!!!!!  I wouldn't let them use if for my first chemo TX.  I have five more treatments of TAC.  I would like to ask you if you found that you felt worse as you had more treatments, no effect, or it got easier.  I know it's probably individual, but I'm trying to get an idea of what is most common.  I have to make some traveling decisions with work toward my fifth treatment, and I'm not sure what to do.  Thanks!  Lauren

Sugar77

Swiftbird, congratulations.  I think I know how you feel.  It was three years for me on Oct. 27th and since new years I've been on a big kick to get more organized, purge and start anew. For the past few years, this wasn't something I could really bring myself to do. Somehow going through my pantry, closets, mixed up drawers and cupboards didn't matter. Not that my house was a mess or anything...it's just I didn't care like I did before BC. Maybe parts of the "old" me are coming to the surface again and I like that.

Welcome to all the new ladies and a big hug and hello to everyone on here.  I hope you all have a great day.

Loafer

Congrats Swiftbird! Glad to hear TN success stories on this thread!



Welcome to the new ladies. I just finished my 4th and final round of T&C. I found the fatigue to get more challenging with each round. I do believe it has a lot to do with your blood counts. Most of the SEs are manageable with meds. Just make sure to eat well ( including meat/beans etc to keep iron up) and drink plenty of water. I was able to work F/T and travel on a business trip. Make sure you listen to your body and get plenty if rest. I am sleeping 10 hours a day. Also waking up every two hours with night sweats though which is another little problem with chemopause.



Question for all you experienced ladies. I was diagnosed TN, with 2% E+, anyone else with this diagnosis and did it impact your treatment plan? I was pre-menopausal going into this and now I hit the brick wall.



Hugs to you all!

christina1961

Swiftbird, Congratulations on three years!  That is fantastic. One of the oncologists I went to said if I made it to three years that was a very good sign.  Sugar, I feel like I am just now starting to feel somewhat like my old self.  I've been pretty physically inactive, trying to exercise here and there, but also working many late hours trying to stay ahead of bills.  Yesterday I went to the gym and did an hour on the treadmill.  Staying fit used to be very important to me from my early 20s to mid 40s and I let my business get in the way from age 45-50 (when I got diagnosed.)  While exercising, I felt some of the old "spark" again - so I am going to renew my effort to exercise at minimum three days a week.

Lauren, my response to TAC was cumulative and even though I worked throughout, I still took about 5 days off after each infusion.  I struggled a lot with nausea however, and also was anemic in addition to low WBCs. My sister had no nausea at all with TAC.  I've read a few accounts on this board where the person receiving TAC continues their jogging routine all through chemo, so we all have such different responses to these drugs.  You may have a better idea after the next treatment.

Loafer, I tested less than 1% ER receptors by initial core biopsy, however, following neoadjuvant chemo, the remaining tumor (which was pretty much the same size) was retested and it showed 5-10% ER receptors.  In my case, I was put on tamoxifen. There is another lady on here who is 3% and on tamoxifen.  It is possible that they may suggest it for you.  I had regular periods at age 50 when diagnosed but went into chemopause.  I have not had any periods return.  The plan for me is to take tamoxifen 2 years then switch to an aromatase inhibitor like Femara for 3 years. 

Titan

Great to hear from some the "older" ladies...ha ha..you know who you are...I think that it is important that some of us come back and tell the newer ladies that yes..we are doing ok....I remember reading about women a couple of years out and doing fine and just crying my eyes out..hoping to be that person one day...and yeah..here I am...it's called payback time...the weird thing about being a few years out is wondering if it is OK to realy move on...to forget that maybe this crap never really happened...to let go and just live..it is hard..it really is...I just want to be happy and carefree but not sure if I can....bc has changed me  I feel like I'm way too serious all the time and that wasn't the old me...but maybe it is cause I am getting older...53 now..my parents ar now 78 and 80 and I know that they aren't going to live forever...ah..sorry didn't mean to bring anyone down...but dang I want to get old but I don't want to LOOK old..dang it...

But I did buy some what my DH calls "ho" boots....I like 'em...and the older fella's at the casinos I frequent seem to like them too...lol....

rachelvk

Lauren - Sorry about your port. I did TACx6, and yes, it did get harder each time. The first two were pretty bearable, and I kept up a pretty normal work schedule and even managed to play in the orchestra for two weekends of Pirates of Penzance. But my body quickly started sending me signals that it was not business as usual - getting out of a chair required energy, and by #4, I was walking significantly more slowly than usual. Still, except for the day of chemo (Thursday) and one or two other days each cycle, I pushed myself to get to work for at least part of the day.

One big piece of advice - I was encouraged by a friend and fellow survivor (though not BC) to swish and swallow some olive oil every day. I did 1 tbsp twice a day and seem to have had less trouble with mouth sores, dry mouth and, most importantly, whacked-out taste buds. My taste went on the fritz perhaps 2 days each round, and then for about 2 weeks after my last tx, but it quickly came back to normal. Also, are you icing your fingers and toes during the Taxotere? I did get some tingling (and it got worse each round), but not debilitating and it cleared up within a few months.

Wren - actually men do have some normal levels of estrogen, and they can be ER+. But that's a good question, and I wonder how that affects their risk factors.

Swiftbird - Thanks for the encouragement! I love hearing those stories.

NavyMom

Lauren, I did TAC X6 and each treatment was harder.  More fatigue especially  But I did go to the gym a couple of times on week 3.  Body aches and joint pain was a hassle for sure.  Please reconsider any travel while on chemo...catching a virus could be very serious.  The news is reporting that influenza is in epidemic proportions and not about to go away anytime soon.  While in chemo I stayed away from anywhere people gathered (church, movies, concerts) and was a paranoid germ freak and wiped down grocerycarts, washed my hands frequently and wouldn't let anyone hug me except DH. 

Loafer, I can't help on ER+ info.  I was ER 0% and PR 0%.  I think that there are some TNs here that have been weakly ER + and wear considering Tamox.

Welcome to the newbies.  and congrats to those who are now "oldies" and celebrating big milestones.

borntosurvive

Hi Lauren:  I did Dose Dense ACT and found AC harder then the Taxol.  I was very sick with vomitting and nausea and pretty well only felt good the day before I would have chemo again.  I had a lot of "anticipatory anxiety" and could not sleep even thinking about my next dose.  I got an anti-depressant and some sleeping pills and that helped me SO much.  Taxol was easier on me - a few days of bone pain that I managed with warm baths and Advil and I was good to go.  Watermelon helps with the nausea and you can eat it in bed, dry cheerios, protein shakes and popsicles helped.  Also mashed potatoes. I lysoled EVERY light switch and door knob daily and none of us got sick last year while I was having chemo.  Better homes and Gardens has a cook book dedicated to Breast Cancer - they have recipes for side effects ie: nausea, mouth sores etc and it was really helpful.  My mom would cook out of it for me.  Hang in there.....you WILL do this.  I can't believe that I am 9 months post chemo now. 

flimsical

Hello all -

I'm 30 years old, just diagnosed 12/14/12, triple negative. There was some weak showing of progesterone, but not enough for them to consider it positive, so they stuck with the TN status. I will start neoadjuvent chemo in a couple weeks after I complete some preservative fertility treatments. The closer I get to starting chemo, the more "real" it all seems. I wore my wig out the other night just to test it out. Not bad, glad I did it. I have always loved dressing up and wearing wigs, but I truly never though I'd need one. Sheesh.

My mindset is now in a mode where I just want to get this over with. I am not negative about my prognosis -- I live in Pittsburgh and am at one of the best women's hospitals in the country. I have great support from family and friends, too. I'm just very anxious to get everything started and moving along. The only thing that really gets me is that I may never know why I got this stupid effing illness. I am so angry about it, it makes no sense. NO family history, no high risk factors whatsoever. I am getting tested for BRCA next week, but I doubt that will be an issue. It's complete bullshit. Now I completely understand why people are so passionate about breast cancer funding and research. I suppose we are at least lucky to live in a time where research and treatment have come a long way and general prognosis is much higher than in the past.

The only question I have is how can I help my mother? I fear for her mental health. She is just not taking this well, and I'm hoping as we go along, her anxiety will ease up. Any advice?

Lauren15

I'm on amazon now and want to get a cookbook (or two) and the triple negative book.  I just want to make sure i buy the correct books.  Does anyone have an opinion on the Cancer Fighting Cookbook The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery by Rebecca Katz and Mat Edelson (Aug 25, 2009) or the Better Homes & Gardens pink plaid New Cook Book, Limited Edition "Pink Plaid" : For Breast Cancer Awareness (Better Homes & Gardens) by Better Homes and Gardens and Tricia Laning (Aug 9, 2005) and is this the correct triple negative book to buy?  Surviving Triple-Negative Breast Cancer: Hope, Treatment, and Recovery [Hardcover]

Patricia Prijatel (Author), Carol Scott-Conner (Foreword)

SherylB

Lauren,

Can you download a sample of the cookbooks and see which one you would prefer?

S