Calling all TNs

Hi Everyone,

Grammy - welcome to the boards! 

So, for anyone who would like something positive to lean on, here is the link again from a few days ago.  It is a Q & A answer session with Dr. Lisa Carey, one of the leaders in TNBC reseearch.

http://www.ascopost.com/issues/december-15-2012/current-perspectives-on-triple-negative-breast-cancers.aspx

I hope you all have a great day.  I'm praying for every one of you and sending you all a big bag of hugs! 

Tell me ladies what is the green. Never heard of this

Debra - your quote from the article is not quite correct. The 10 year 8% relapse figure she gives is for TN small tumors with no node involvement, not for all TNs.

Hi Grammy98 - No worries!  I'm delighted to hear that you doctor thinks we are making progress in this area, and so happy to see you posting your success too!

Placid44 - Oops! Thank you so much for pointing out to me that I had the rate incorrect regarding the article I posted!  I have also updated my posting.

Talk to you all soon - I'm trying to make a non-complicated dinner, which suddenly became very complicated!

Dawn-I didn't see your post right before mine a ways back, so happy to "see" you!!! We must have been posting at the same time! I am growing some green, though they haven't produced yet:) I will let you know when they do.

Cocker-I don't really understand the insurance either. I was getting mri's yearly and then one year they said they wouldn't pay anymore, I would have to do out of pocket, which I couldn't afford. It will be interesting to see if they will pay for a pet scan now as follow up, since it has been over a year since I have had one. so I think...maybe longer.

Geez Inmate I could do with some of that.  Will it make me go loop di loop cause I'm already that lol. Seriously wouldn't know where to get it here as its illegal but sounds pretty good to me.

Your post and what you are going through puts me to shame.  With all your worries you are up and raring to go whereas me,  what am I doing, blobbing out in front of the computer with  a smoke in one hand (just finished dinner) and a coffee in the other. I did work from 7.30am to 5pm so thats something in my defence isn't  it.  Eagerly  waiting for you to say yes.    You never did put a photo of your jewellery on here, are you able to.   I absolutely know you will do well at the art show, I have no doubt about that. 

Gilly when do you leave for England.  Give the Queen a big kiss from me (and a sneaky one to William).

Bak I am so glad we don't have to pay for treatment here (although a lot of people have private insurance and get their treatment paid for) but it is so expensive and I just couldn't afford it.  I went public and really could not have asked for better treatment.  Yes there was four of us to a ward but I got great care and have a great surgeon and the best in the country  for my oncologist. I was offered a private room but I wanted somebody to chat to.  Now they have started  remodelling  the hospital with a mega bucks upgrade and you do get a really nice room and ensuite all to yourself. Bit too late though cause I don't intend to go back!!

Big hugs to everyone. Thinking of you all.    

Hi everyone.  Glad to see you posting again, Inmate.  I missed your humor and wisdom.  Welcome to the new ladies.  Finally a warm day here in the midwest.  I am going to dig in the dirt in my backyard.  That always bring a good feeling of renewal, followed by a back ache of course!

Wishing everyone a peaceful day.

Peggy - So glad to hear your great news!

gilly, good point about the TNBC survival rates. I'm also surprised that Dr. Carey was quoted as saying:  "At 10 years, these patients have an 85% risk of relapse and a 79% risk of death without systemic therapy.  With well-delivered third-generation chemotherapy regimens, however, risk can be reduced by 24%, so that their 10-year mortality risk becomes 55%."  A 24% improvement on a 79% risk nets out to 60%, not 55%. (sorry, I'm a stickler for math and details, and it surprises me how often people confuse percentages with percentage points, though I sure wouldn't expect it from a scientist; perhaps she wa smisquoted.)

Bak......good luck with your crop.  I'll be interested in hearing your great success in cultivation.

Cocker.....we are very lucky here in washington state that it is legal for both medical and non-medical reasons.  it has been a great help to my treatment.  i just wish everyone could reap the benefits of such a natural remedy for SEs.  Go green!

Phyllis.....that was very sweet.  I will try to get some pics posted shortly.  since i can't work a regular job right now i'm trying to find other ways to make a little extra dough.  my jewelry has always sold well in this store so i have hope that i will do at least okay.

Peggy.....yeah!

Navymom.....ahhhhhh dirt.  I have finished planting for the spring.  new beds = lilac trees.  can't wait til next year to see some blooms.  my sister and friends all share plants every spring so i have lots of new transplanted beauties to remind me of the love and support i have.  happy digging!

It is sunny here today.  Have a wonderful day ladies!  Love to you all!

Inmate and Navy Mom - About the time I started losing my hair with my first round of chemo I got a "bee in my bonnet" to do some yard work one Saturday.  I do not naturally do this (my husband does) but I got rid of all the "dead heads" on our rhododendrons and cut away at the dead fern fronds.  I remember well how irrationally passionate I felt about this at the time.   In hindsight, I think I was trying to take control over something, anything.  Get rid of dead things and bring on new and beautiful things.

I did the same thing this past fall 2012 and just a few days ago my husband commented on how many flowers we had in the yard.  He attributed it to the mild NW winter we had, but I reminded him of what I had done the past two years.  He agreed that my work was likely the cause. 

I hope we all can push the deadheads of disease away and find some colorful flowers in our lives.

I was diagnosed 1/23/13, BMX on 2/28, 2cm IDC, clear margin 1/2 lymp node had microscopic cell, was given option of 6TC or 4AC +12 taxol. went with TC but it seems from reading this forum, that the standard treatment for TN is ACT, especially if there is lymph node involvement. Is there any one else with a few years out who did TC? Thanks

Luah - I just sent you a very rushed P.M. I have to get gdaughter ready for school. I know there are typos in it - especially in your name, as I called you Leah! sorry. Please feel free to pm me with any questions. 

Sherry

I am so very sorry to hear the news about your sister, and hope that her journey with treatment will be a kind one to her.  I know the site "Inspire.com" has a very good breast cancer forum, and a forum for all other types of cancer.  Perhaps you can start her there, and, as on this site, others on the lung cancer forum on Inspire might have more suggestions from their own experience for other good forums for her to join.  God bless.

Hello ladies - Good to see many familiar names, Luah, Titan, Inmate, Bak, LRM, Cocker

Hope everyone is doing well.  I am coming back to say Hi.  Doing well so far.  Recently, another lady at work got diagnosed with early stage DCIS, so I have been helping her understand and I got reminded about my journey.  Hers is not TN, but 100% positive for ER, 80% for PR.  Does anyone know whether these kind of percentages might be the highly aggressive kind.  She has family history of various types of cancers.

Lately,I am not feeling too well, kinda upper back hurts, feeling kind of the same feelings I had before diagnosis.  But my tumor markers done in April, were unremarkable, the same low numbers for all the 3 different tumor markers.  I am wondering if I should ask for a petscan?  I have a small thyroid nodule which, after 2 biopsies were negative for cancer, 6 months back.  Last time, the nodule had become a little smaller, this time, it is a little bigger, from 1.8 cm to 2.1 cm.  Doc asked me if I wanted a biopsy, I said I will wait for 6 months and get an ultrasound at that time.

I realized this morning, that I have no one, absolutely no one to talk to about these feelings.  Who can I talk to?  The new lady who got diagnosed, no she is not there yet, she is just getting her first shocks.  My kids - they wouldn't understand.  My mom - poor thing, she will listen but wouldn't understand.  I thought of you, my friends here on this site, who I know would absolutely understand.

I am trying to catch up with reading many recent posts. Luah - I just read your posts regarding 10 year survival.  I have to go back and re-read again and try to understand what Dr. Carey said.  I hope it is good news.

Remember my support group?  We had formed a "newly diagnosed" group in July, 2010 when I was first diagnosed.  A group of about 10.   I had many dinners with this group but left I think it was 2012.  One of the precious ladies had even become my good friend for a while, phone friend.  Anyway, she was looking forward to retirement and we had covered many such topics during our long talks on the phone.  Then we kind of drifted apart, just for some months.  Her husband called me after some time to tell me that she had passed on.  This was the most shocking news for me.  I am still in shock, unable to believe that she actually gone.  Hers was not TN, was positive for ER and she had adjuvent therapy.  Tumor was large, she did chemo for 4 months, only to find out the stuff wasn't working, it had not reduced her tumor.  So they tried other therapies.  At one point she had healed. She was taking aridimex and it suited her well.  I thought she was gonna make it.  But I guess it came back and killed her.  Very sad.  This hit me home, really badly.

Is it true that there are less new cases now?  Honestly, ladies, I have been in denial for quite some time now.  I think I did mention in my posts last time, that psychologically, I think I am trying to run away from these memories and the reality of this.  I almost never want to get checked, it is as if I really don't care, which can be really dangerous.