Positive discussion about TN

carolinachick

How is everyone doing? 

I wanted to share something that happened this week:  I was at the gym, running on the treadmill, when an older lady started walking on the treadmill next to mine.  I started talking with her, as I noticed her compression sleeve.  Turns out that she had breast cancer 25 years ago, a different type of cancer 20 years ago, and she just seemed to have the best attitude about life.  It was exactly what I needed, since I've kind of been obsessing lately about the "what-ifs."  You know, what if the cancer comes back, what if my headaches are something more serious, etc.

Anyway, just wanted to let you know that we are surrounded by long-term breast cancer survivors and don't even know it.  And I plan on being one of them!

Have a great day, ladies!

Morgan513

I work with a woman who was TN, 20+ years ago.  She's just 51 years old.  She had double mx, CMF and has been cancer free since.  She also had a baby post chemo--she has an 18 yo son!

Lorrie 

pdaw

Lorie and Morgan - I take prilosec for the indigestion.  If you get your dr. to write a prescription then your insurance will pay like any other prescription.  Instead of paying about $30 over the counter, with my prescription, I only pay $10.

 sido - you need to follow through with Laurie.  The scarves are beautiful and the personal notes from Laurie and her staff is very touching.

Pam

Gramof3

Carolinachick--thanks for sharing that experience.  Yes, TN gets plenty of scare headlines, but there are so many survivors that have gotten on with their lives and we don't hear about them.  Thanks again for reminding us.  Our subgroup (TN) hasn't been the subject of much research--we're not a large group. Better days are ahead for us--we just need to stay positive.   

Titan

On some of the other boards women talk about being estrogen postive as a bad thing...I hear that after a couple of years our chance of recurrence goes down dramatically......the er + pr + does not...it sucks for both groups..however....don't be too concerned about being TN..my oncs don't seem to be...take VIT D3, exercise, eat right....its a crapshoot for everyone that has breast cancer..EVERYONE....hang in there ladies...I'm trying so hard to not be scared all the time..and I haven't been...feeling pretty good...just keep an eye on yourself..you know your body,...if anything seems different get to the DR right away...the key is catching this crap quickly....even if we drive the doctors crazy..well so what.

mossybaby

Hello ladies...

I am attempting to be positive although this diagnosis of TNBC has really shaken me up.   I have read through many of the posts on this site and have been brought back out of the darkness many times in the past month though. 

I do need some help/info if any one may have it.  I have already had 6 rounds of TAC chemo and a double mast.  The path report said the chemo effectiveness was "minimal."  Are there other ladies out there that this standard chemo combo didn't work on?  What other chemo medicines are reccommended for us TN women? 

Thank you for any advice - I'm going for a second opinion in Philly on Oct14th and would like to have options to research & discuss with the medical team so I can kick the poop out of this thing!!

jeanl151

   I was diagnosed with Tn in Aug and am trying to learn what I can. Robin Roberts on GMA today mentioned she has TN.  She said it is environmental. Does that mean it was caused by something we did or came in contact with during our lives?  What could have caused this?

     I was also wondering if someone could help me understand some of the abbreviations used on this web site.  I see my onc next week and want to be prepared.

   What does AC,  TC, TAC and TX stand for?    Are there other med abbreviations?

thanks and good thoughts to all on thisBC road, Jean

fmakj

Hi Jeanl151,  I will bump a thread for you... it is under "waiting for results" forum called Abbreviations for newbies.  It will definitely help out with some common abbreviations.  Not sure if AC TC and TAC are in there as I believe they are all variations of chemo.  I am not well versed in chemo, as my Onc does not recomment chemo for me.  Take care!

carolinachick

Welcome ladies,

Jeanl151 - the T is for Taxol or Taxotere, C is for Cytoxan and A is for Adriamycin, which are all chemo drugs.  I haven't heard that TN is environmental.  Actually a good number of women with a genetic mutation have TN, so there is definitely a genetic component for some women.  For most of us we will never know the "why" of our cancer.  We just have to treat it and do what we can to prevent a recurrence.

Mossybaby - sorry that I don't have any additional info on other chemo regimes.  Maybe some of the others can help you out.

Titan - very good advice.  I'm always afraid that I'm being a hypochondriac when I question my doctor about a symptom.

Take care, everyone, and enjoy your weekend.

Jennifer

ddlatt

Hi all,

Today is my 5th anniversary since end of chemo and radiation, with diagnosis of triple-negative breast cancer.

http://ddlatt.blogspot.com/2014/07/five-years-sinc...

I've had no health issues at all during the last five years.  Smooth sailing!  And it's so encouraging to read about all the progress made in the treatment of TNBC.

xoxo

booboo58

Hi Danielle, I also have triple negative and have just finshed my dose dense AC chemo. It was given to me x 4 every other week. My second day after tx was the worse, spent the day on the couch. I had my treatments on Thursday or Friday so I had the weekend to recover. I have not missed work a single day and I think overall I did very well. If you can plan your treatments around those days when you know you can have help from husband/friends/family when your energy will be the lowest you should do well. I did take Zofran before and after the txs for a few days to make sure I did not feel nauseous. I also received Neulasta 24 hours after my treatments to rebuild my white count. I took Claritan one per day at night for the bone/muscle pain and it worked!  I start Taxol next week and not sure how that will be but my doc says it is easier on the body than AC. Positive attitude and "I can do this spirit" will get you through.

Purplegurll

Good morning,

I am a diagnosis still in process but what I know at this point has led me to the TN website. Five plus years ago I had DCIS that was ER- and PR-. If they tested for HER2 then, I don't remember the result. I had a lumpectomy and radiation and went happily along my way for five years. I did not see a MO or RO during that time, just kept up with mammograms, ultrasounds, and MRI's. Just after Mother's Day this year I felt a small lump. Fast forward. I had a bilateral mx on July 2nd with lat dorsi/TE reconstruction. I was staged at 1A going in to the surgery. The surgical recovery is going well but the pathology came back less favorable than expected. The biopsy and MRI indicated what they thought was a 1.4 cm IDC and ILC tumor is actually 3.0 cm and there are three of six positive nodes. The initial biopsy pathology showed ER-, PR-, HER2-. I will reach out today to a MO and the BS also mentioned a RO due to proximity (I don't know what that means). This diagnosis has completely thrown me for a loop. It would mean a great deal to me to hear some good, positive thoughts. I was expecting the TN diagnosis but not the more advanced staging. Thank you for listening.