Calling all TNs

Nettie1964

Sorry it won't let me resize and have several pics that I think you ladies will get a laugh from!

Allydp

Nettie, thanks for the great pics! I just love cats and smile every time I see them.

FierceBluebird

maggie and jenjen, hope all is worry for nothing. 

Is anyone taking raloxifene? (Evista)

Nettie1964

I just saw the article about Evista, obviously it is not something that is widely known yet or I just live in an area that is behind, because no one here has mentioned it!  But it is something I will ask about when I see my MO in August!  (That is...if I remember)

ufandi

I've been a lurker for awhile but wanted to post! I am 34 years old, and completed neoadjuvant chemo for TN cancer in April. Also found out I am BCRA1. My cancer was extremely fast growing with a ki-67 of 90%. Mammogram and US measured tumor at 2cm and biopsy confirmed a positive lymph node. However, the MRI showed whole other story. It showed tumor to be 7cm! Basically my whole upper outer quadrant. I had surgery last week and got path report today. It stated that I had a 95% reduction, going from 7cm to 5mm. They took out 5 sentinel lymph nodes. One of them was a micro-met because it had greater then 200 cells. The others had isolated tumor cells but the surgeon said that's still considered negative. She went ahead and did a partial axillary dissection and took out 6 more, and a few of them also had the isolated cells. She said that basically, all those nodes were probably cancerous before chemo and got melted away. I am going to have radiation, but I feel like instead of being happy, I am focusing on these cells that survived and wondering where else in my body they are hiding.  Anyone with similar pathology? 

~Andrea

FierceBluebird

Andrea, I think many of us can relate. But a wise person once told me, no matter how much you worry or fret, it won't change the outcome or your specific areas of concern. It just causes extra stress.  I know easy to say "don't worry be happy" than to live it.  I am a supreme worrier!  It sounds like your team is taking good care of you and your being monitored well. Good luck with radiation. Many people find it the easiest part of treatment. Try to think of any worrisome cells getting zapped by radiation.

MomMom

Just saw this article posted on the TNBC foundation website regarding promising new Mayo Clinic research using immunotherapy for triple negative. 

http://www.newswise.com/articles/view/618742?print...

bak94

Just had to stop by to share a very sweet moment between my dogs! I gave my Chihuahua, Harley, and my border collie, Petey, a small piece of bread with peanut butter on it. Well, Harley's piece bounced and wound up in between Petey's legs. Petey gently pushed it out so Harley could have his piece! I have never seen a dog do this! Usually they would just snap it up for himself!

I will stop back later to catch up on posts!

Islandmama2

Well I got some good news today! My bone scan and CT of chest, abdomen and pelvis was clear!!

Still waiting on the oncologist appointment for next steps.

MomMom

Island mama - Congrats!!!!  What a huge relief.  Good for you!

Bak94 - So sweet.  Makes me want to run right out and get another dog.  Lost our sweetie cocker/Golden mix several years ago.  Been thinking about what a huge comfort a sweet dog would be to me now.

mags20487

yeah Islandmama!!!  hugs all around!

slv58

congrats island mama! That's great news. 

Back, that's unreal, love that story-dogs are such incredible spirits!

Radical2Squared

Mags,

Might just be a simple needle biopsy if it's right on the sternum! You might get to avoid the core biopsy!

Meadow

Welcome Andrea!

FierceBluebird

Congrats IslandMamma! 

Bak,that is a cute story. Dogs rarely share. 

Mommom, hope immunotherapy happens soon!

simplelife4real

Hi All,

Bak that is a really cute story about the dogs.  I'm glad you shared it.

Islandmamma....so glad your tests came back clear.  I know what a relief that is in the beginning to get some good news and to get a better idea of where you stand in terms of staging.  That's wonderful.  I agree with what other people say to about feeling better once you start treatment and actually doing things to get rid of the cancer cells.  It's actually an empowering feeling....scary the first time for chemo, but it will all work out and you will be glad to have each step behind you when you complete them.  

I'm looking for some feedback on what it's like after treatment ends in terms of how long it takes to get your strenght back and feel somewhat normal.  I'm slowly getting back strength and stamina after finishing treatment about 3 weeks ago.  At first, I would alternate between having one good day and then a day I was so tired I spent the day in bed.  This week, for the first time, I had 3 good days in a row before I collapsed and needed to spend a day resting.  Is that how it was for others?  My "good" days really aren't that strenous either.  On the good days, I go to a pretty easy aerobics class and do some light gardening or light housekeeping for an hour or so.  I'm 61 years old and I was in really good shape when I got diagnosed.  I'm really trying to develop a consistent exercise routine because I know how important it is in terms of overall health and the evidence indicates that the chances of recurrence are lower in women who do 30-60 minutes of aerobics 5-7 days a week.  It's a great motivator for me, but this darn fatigue still has it's grips on me.  I'm just curious......what was it like for others after treatment ended in terms of how long the fatigue hung around and getting into an exercise routine?  

bak94

Simplelife-The first time I had cancer it took me about a year to recover. Part of that for me was thyroid was off after treatment and it took awhile for them to discover it. It was like you described, my good days before a bad day started to increase, and then pretty soon the bad days were just once in awhile. I strongly believe when you have a bad day it is best to rest, rather than push through it. Your exercising is great! That will definitely help you recover!

Wooo hoooo island mama! Great news! 

NavyMom

Simplelife:  Your energy will gradually return.  I think it took almost 6 months just for my joints to stop hurting and I could even get out of a chair without looking and feeling like I was 100 years old.  I know you will not want to hear this, but, I don't think I even came close to feeling like my self for about a year or even 18 months after my last treatment.  I sometimes have days of still feeling low energy and just plain blah....BUT you will feel better as time goes by.  And for me, exercising and staying active in general is good for mind, body and soul.  And you are correct in the current information regarding the 30 to 60 minutes 5 to 7 days a week.  My Onc tells me the same thing everytime I see her.  So rest when you need to and get moving when you can.  Listen to your body.  You'll get there I promise!

Meadow

Yes Simple, I agree with Navy mom and Bak94, I finished rads just a few weeks before you did, April 7th, and I feel good, more like my old self but I have days, and I mean a few in a row together, where my energy level is low. Navy mom, I have 'the old grandma getting out of a chair thing' going on now. My feet still are giving me fits from taxol. It is good to know I am in good company.

Lisaj514

meadow, I think you're the only one that I've heard that says that your feet hurt. Mine do too. Not my legs. Just mostly my feet, ankles, toes etc especially when I get up after sitting for a while or in the morning, ooph. I finished taxol on 4/21 and just started rad 6/4.

Nettie1964

Ok, I'm going to ask a question that is probably going to make everyone think I'm weird!  And just so you won't have to read the bottom, I finished chemo August 2013, rads Oct 4 2013!

Just wondering if anyone else has had a weird sense of smell?  It's like sometimes, out of nowhere, I smell these awful smells, but when I "try" to find where it's coming from, I can't!  It's like it's coming from inside.  It will be there for just a second and then it's gone!

I'm posting this on multiple sites in hopes to have someone reply!

Lisaj514

what I meant is that my feet hurt only. No where else and it's not neuropathy.  Neuropathy is usually tingling and numbness and it's not that, just aching, like arthritis. Standing still or sitting is the worse or in the morning, feet and toes only.Walking does make them feel better. It's weird

Lookingforward66

Nettie,  even though I only had two treatments my "smeller" is a mess. Yes, I get that every now & then. It is almost like I smell my own sinuses or something strange but BAD. I figure I am just screwed up now so I figure ok. Something else different. 

Lisaj, I was told by my MO that chemo accelerates some conditions in some people. Arthritis is one of those. My MO told me after bone scan that my aches were arthritis & degenerating bone disease. What you described is what I have every day now. Yes exercise helps, but too long on the feet after a bit your walking like over 100!  

So ladies your not alone.  Our bodies will never be the "same". We now get to find our new normal. 

Fun times!!

Marsha

Meadow

yes Lisa, after sitting or in the morning I walk like I am 100 years old.  I agree, chemo has helped save my life no doubt. but left its mark for sure. But I will take whatever LIFE gives me lol!

simplelife4real

At last.....an article about TNBC that doesn't sound like it's the "bad" kind of breast cancer.  This was posted in the American Cancer Society website.  TNBC worse or just different? I actually felt more hopeful after reading this.  

Meadow

Thanks Simple for the great article

NavyMom

Yes indeed, Simple.  Nice article.  Always make me feel good when I read about all the research that is going on for all cancer. and esecially Breast cancer.  And a big Thank You to all of those who participate in study trials.

Allydp

Fantastic, current, article, Simple!!! I think we will be seeing more and more positive insight in the coming years thanks to so many great tails going on. It's very encouraging! 

ALHusband

Hi Ladies. Just wanted to report that my wonderful bride Kathy had her regularly scheduled MO appt. today. Doc says bloodwork, "Couldn't be much better!". He says all of her counts, etc. are "dead center in the normal range". Newly diagnosed and those going through treatment now, please persevere and know that there is life on the other side of the tunnel and it will soon enough appear in your rear view mirror instead of your windshield! I remember sitting holding my wife's hand on the day the doc gave us the news that she had BC, then drilled down further to TNBC.  We were both scared stiff. 14 months later she's doing great! This is a great place to come for advice, encouragement, information and understanding along the road! You may ask why I am on here instead of my wife. She's simply NOT a computer person. We made a deal at diagnosis that I would do all of the "looking things up" and I would take care of the administrative end of this battle while she focused solely on healing! I must say we make a great team! There's hope ladies! There's definitely hope! God bless and take care!

jenjenl

scan is scheduled for Wednesday at noon.  we are headed to DC thursday so that will be a wonderful distraction.  now i ponder to hear the results before we go or wait until we get back on monday.