Calling all TNs

jenn3

Moe - I was in an Avastin trial, I rec'd placebo.  At the time, I was Stage III and in all honesty, I wanted the Avastin in hopes that it would keep me in remission longer.  I'm wishing the same for you.  Good luck with your appointment and I hope that you feel better soon.

Karen66

Hello all you beautiful ladies!  This is my second rodeo.  This is my 1st time as triple neg. though.  I was 1st dx in 2003 with ER/PR+ and HER 2-.  In Jan. of this year, I was dx with a second primary in opposite breast: triple neg., mets to bones and lymph nodes.  Starting rads in one week to ease the pain and then it's off to the chemo races.  Oh joy, I so wanted to do chemo again....lol !  But, it could be worse so I'll take it and grin & bear it. 

APRILNJ

I dont see being TN as being bad, as my doc said to me, dont view it as bad or good, it just means you have a different treatment options but on the plus side NO Hormone pills and after 5 years we are considered "safe" while positives can reoccur 20 years later (not my words my onco)

She said being Stage 1 and node negative my chances/survival rtes are the same as a positive, unfortuately though I need chemo to guard against reoccurance, unlike positives who can take a pill at Stage 1 with node negative....oh well it is what is is.....I am POSITIVE, this too shall pass..Keep the Faith..being TN is not so bad........

APRILNJ

PS

I did bilateral mascetomy and doc feels that was aggressive and lessened my risk for reoccurance b/c I am stage 1 and tumor vey small......

Titan

April..I meant to tell you that I liked your avatar!  Very sweet!

And hey kllong..welcome to our tn club..and good luck with the chemo rodeo!  

Hope everyone has a good week...my DD went back to school today after spring break..we did some wedding things....My DS hasn't come home for awhile..I miss him!  My son was a senior in high school when I was diagnosed..my daughter a sophomore in college..now she is getting married and he is transferring to OSU this fall..It has certainly been a whirlwind of activities and changes in our lives...It's not enough to get BC but dealing with the empty nest syndrome...It is hard to take sometimes that they are growing up..and away from me...I don't like it.

Beets

Diagnosed at age 44 in May 2009 Found lump through self exam. Did not show on mammogram due to dense breast tissue. Original tumor was 4.8cm. Participated in neoadjuvant PARP inhibitor trail with Gemzar and Carboplatin chemo (4 rounds of 4 infusions every two weeks) Had bilat MX with tissue expanders post treatment and eventually implants. Had a pathological complete response from trial ( tumor was completely gone). No lymph nodes affected. Chose to do DD Taxol for 4 rounds as extra security.

4 months after finishing DD Taxol found inflamed subclavicular lymph node on same side as original tumor. Had it removed and rt. axillary lymph dissection. 10 of 12 nodes removed were cancerous. Same TN as before. Diagnosed with recurrence. Completed 4 rounds of Adrimycin/Cytoxin and 4 rounds of Taxotere in Jan 2011. Post chemo scan came back clear. Completed 30 days of rads on the 17th of March.

After 12 months of chemo over the last 16, I am cautiously optimistic that I have no evidence of disease.  Looking forward to getting my life back and being healthy.

riley702

I also had Avastin (8 rounds! clinical trial), and all four of my grandparents died of stroke. My only SE I could tie definitively to the Avastin was a slightly bloody nose most mornings.

beccad

Hi all, I met with the RO, and the MO today.  The RO wants me to get 1 more fill this week and then I meet her again next week to get my CT scan and simulation.  I think rads will be starting in about 2 weeks.  The MO wants to follow my tumor markers for a few months before deciding if I need more chemo.  So...........1 more fill this Thursday, and then start back to work next Monday.  I will be trying to keep all of my appts in the afternoons, so that I don't have to miss much.  The MO nurse has already givien me a heads up that I will be kept as busy at work, (I am the nuclear medicine tech at our hospital.  I will be doing scans on the patients that have not been being done.  I only had 2 PRN techs that also had full time jobs, so they worked on Saturdays and did inpatients in the evenings.)

Lynn18

Beets:  You have certainly been through a lot, 12 months of chemo.  Seems like that's what works for us as Triple Negatives.  Mine didn't show up on my mammogram either.  Welcome, I hope you are feeling stronger and healthier. 

MBJ

I just read through all of your posts and I am too tired to post anything of worth, so I will just say, welcome to the newbies, and for everyone else I hope you are doing well with your treatments.I have 3 days of dr. appointments so I will only be checking in but wishing everyone a great week. 

BernieEllen

Hi everyone, i'm still learning about all of this.  Appointment on friday to find out if i'm to have chemo.  Had lumpectomy and 3 nodes removed a month ago.  Grade 3 - 3.1cm. Stage 1.  Nodes clear.  i'm TN. Worried about what happens next  

kelben

welcome all newbies, sorry you have to be here.     Try to keep on an even keel Bernie, you will probably have to have chemo, but although it isn't a day at the beach, it is doable and it kills cancer, so keep your chin up and keep checking in here for words of both wisdom and courage.

minxie

Has anyone done a Komen Race for a Cure? I'm going to do the Atlanta one in May. Though in my case it'll be more of a walk than a race   I was trying to figure out if there was a way I could specify that my $$ raised goes to TN research. The registration form doesn't seem to have any options. I'm not crazy about the way Komen runs things, but this does seem to be one of the few organized attempts to raise money for the fight against breast cancer.

Teka

minxie,

Komen getting bad press lately?

Kymn

Ok girls I am really getting worried about Michelle67...has anyone heard anything????

tracie23

I am doing the relay for life at the end of April.  I am not a Susan Fan. I love the American Cancer Society they have helped me in so many ways. I can't imagine not supporting them. Sorry if the shirt offended anyone

Kymn

lol love the T shirt

Suze35

Welcome all newbies, although I'm sorry you all have to join.



MBJ - I hope your doctor appointments go well!



Beets - what a rough road! That stinks that you got pCR, and it still returned, but thankfully it was a local recurrence. Chemo Is all we've got -I'll be doing a total of 11 months of chemo myself, if all goes well with my PET.



Kymn - haven't heard from Michelle, but I know she's doing chemo. Maybe it is just knocking her out right now, I know there were weeks when I couldn't do much more than watch tv. I hope she's okay otherwise.



Tracie - LOVE that shirt, and totally agree about the ACS. When I pass on, 40 years from now!, I will be sure any donations go to the right place, where research is the priority.



minxie - I want to do a walk, but maybe next year. We get the Avon walk up here in Boston, so I'm going to consider that one. I find the idea very inspirational, just wish we had more control over the donations.



Becca - I'm glad you and your MO have decided on a course of action. I am the one pushing for more chemo in my case, but my MO would normally recommend moving on to rads also. I just happen to be "that" patient, lol.



I'm feeling pretty upbeat today. My back/leg pain has eased, and since it started the day after we got our new bed, I'm beginning to believe it is related to that. Still a little tense about my PET on Monday, but I'd rather rip that bandaid off quick so to speak. Had my teeth cleaned and a tiny filling taken care of this AM in between my chemo. And I am almost feeling normal, I even went without my scarf today! I'm going to enjoy it while I can, I know I'm going down for the count soon.



Have a great day everyone!

Anonymous

tracie- love the shirt. Where can I buy one? Seriously... where?

tracie23

You can find the t-shirt at Cafe Press, I have nother funny one that people love I got it from Chemo Chicks.com

Anonymous

Thanks tracie--- I just ordered one!

jenn3

I love the shirts! I think I'll be ordering some....

MBJ - sorry you're not feeling so well, rest and ((hugs)))

I went to a fund raiser for Komen last year in which a friend of mine gave me a check i/a/o $500 to give them.  I gave it to a woman, who was rude, barely spoke two words to me and not once said thank you.  After the event, I regretted giving the money to them.......I am not crazy about Komen either and won't be supporting them or encouraging anyone to support them.  I think they've gotten a little too big for their britches. 

Welcome April,Bernie & Beets..........I am sorry you had to find your way here, but the women are supportive and full of knowledge.

cc4npg

A little bit to catch up on I see...

kllong:  Really hate seeing you here again.  You have a wonderful outlook and that helps a bunch, but this sucks to see you returning.

Titan:  My two girls are adults and it is hard not having them around... in one way... but then again they were driving me nuts bickering back and forth as some sisters do.  Hey, look at it this way, you could have a 3 yr old to keep you company!  I thought about it the other day.  I actually started two generations... my daughters and now my son.  I think you'll feel better once warm weather decides to stay in Ohio!

Beets:  Wow, you've been through a lot in a short time!  I am glad to hear you're NED!  Let's go with that!

beccad:  Busy can be a good thing!  It will pass the time quicker.

BernieEllen:  Most of us have chemo... I would say all, but there is a minute group who didn't.  What happens next?  You just take the next steps in being done with treatment, and we'll be here to help if we can!  Try not to worry about chemo... although that's silly because we've all worried about it before we had it.  Seriously, it's not as bad as it sounds... and it's over pretty quickly in all honesty.  Have they said you don't need radiation?

cc4npg

Kymn:  Michelle67 last logged in 3/24.  From her posts, it doesn't sound like anything major was going on, but she was getting ready for her 2nd round.  Hopefully she's felt well enough NOT to be here and maybe busy.  I hope so anyway.

Titan

Shout to Michelle67!   From reading her bio and her posts..she is a pretty busy lady!  I admire her!

Bernie..your stats are pretty close to mine..would be surprised if you didn't have chemo..don't worry..we will do your worrying for you..OK???.

Angelisa..since you are in Ohio too you know Ohio's weather...this year has just been incredible as far as weather goes...very weird...

lrr4993

Just popping in to say hi.  I hope everyone is doing well.  Tracie - the shirt is fabulous.  I love it, although the best one I have seen so far was "yes they are fake, the real ones tried to kill me".  LOL.  You have to have a sense of humor, you know.

I am heading out in the morning on my first vacation and really first trip out of atlanta since diagnosis.  Girls trip with my college friends, which is the reason I can't make it to DC. Have a great time in DC and post pictures when you get back!

Have a great week! 

cc4npg

Yes Titan... the weather here has been very strange.  We had that bit of really warm weather then "poof".. back to winter!  I know I'll feel better once warmth really sets in and it won't be much longer.  I dislike Ohio weather very much.  Cold yucky winters and then sometimes a sauna for summer. And I dunno how economy is where you are but it's not good at all in certain areas.  I think Dayton is going to be completely gone within 10 years at the rate it's going.  People are moving either south to Springboro or north to Columbus.  Glad I don't live in Dayton!

Sugar77

Hi, I'm also just popping in to say hello. Welcome to the newbies.  

I got the results of the 6-month follow up mammogram on the good boob (they were watching something)....benign! Yay, got the official word on my answering machine yesterday. The report was normal. What a relief. 

Luah

Sugar77:  So glad to hear that!  I was thinking about you while I was in the shower today (yeah, doing a breast self-exam) and was wondering if you had results yet. Awesome news. 

joinsing

Hello all - I'm new here - wish I didn't have to be but determined to make the best of it! I was wondering if anyone else out there had to make the choice between AC-Taxol and FEC-T (Luah, I think I saw some posts that you had the same choice - what did you go with and why!!). I am stage 1b/2 (different oncologists, different opinions. I am choosing to think 1b......:-)....!), grade 3 TN with microscopic evidence in 1/2 nodes.....