Any TNBC's that weren't given Taxol or Taxotere?

puddingirl84

Hi everyone. I just want to know. I guess I am looking for survivors of TNBC with path similar to mine that were given or not given a Taxane as part of their chemo regimen.

DX-2005, <1cm 0/2 nodes neg, ER/PR + Her2 -, grade III, Stage 1, AI and rads 

DX- 2006, 2cm 0/2 nodes neg, ER/PR- Her2 -, grade III, BRCA neg, Stage 1, A/C x 4, rads

DX- 2009, 3cm 0/2 nodes neg, ER/PR- Her2 -, grade not known yet, BRCA neg, Stage 2, regimen not known yet, BMX on Jan 25, 2010.

This information will help me in my search for a new oncologist. I think my present onc is toast!

Again, I am looking for a path similar to mine. I am just trying to figure out why TNBC is not treated more aggressively if it has such a poor prognosis. And why aren't scans done as part of a routine follow-up, instead of waiting for an obvious symptom of recurrence. 

In 2006 I didn't even know what a TNBC was! Onc never told me. I was told I was good as new when I was finished chemo and rads. I'm tired of being in the dark.

Thank you girls. 

Puddin' 

LRM216

My onc has had many triple negs and when I went for my first appt. with her, she gave me three choices - Taxotere and Cytoxin; Adriamycin and Taxol or the combo of Taxotere, Adriamycin and Cytoxin.  She explained the first would be the least agressive of the three (although still agressive) and that TAC would be the most agressive insofar as putting me on my back the fastest.  We chose the Adriamycin and Taxol (which after the first Taxol, I had to switch to the remaining three doses being Taxotere as I developed too much neuropathy from only the one Taxol).  I work full time, am a widow and also raise my 14 year old grand-daughter, who also has a very heavy schedule, so I was able to work throughout my chemos.  Any of the gals I have met since my diagnose (1 yr. ago last week) that were triple negs - all had a taxane in their treatment.  Maybe in 2005 and 2006 they weren't using the taxanes as much?  I had my treatment in 2009, so perhaps that is why we all have had a taxane.  I pray it worked!  I wish you all the best in your journey, you will be in my thoughts and prayers.

Linda

Sugar77

Puddin' - I had Taxotere and Cytoxin x4.

JulieC

Hi Puddin' - I also had Taxotere and Cytoxin x4.  I was diagnosed almost 2 years ago and my onc told me that if I had been diagnosed just 6 months earlier, my cocktail would have been different.  I was told that the T/C was very aggressve.  I also did rads 33 tx.

Hope this helps - Julie

Sugar77

I will be doing rads in March after recouping from TC.

Scooter-12

Hey Puddin'...I had 4 rounds of Epirubicin/Cytoxan and 3 rounds of Taxotere every 3 weeks.  My onc gives scans every 10 to 12 months, sooner if you have symptoms.

Anna

puddingirl84

To Everyone- OMG!!!!! I think I've been F----d by my present soon to be past onc. I'm sure there are a lot more posts coming my way that support what I have recently suspected about my previous treatments.

I posted a topic: "Should I fire my oncologist?" on the Chemotherapy-Before, During & After forum on February 12th. 

Thank God for these boards.

Puddin' 

pennylane

Hi Puddin"  Well Here I am...same as you...Dx in Aug 2005...Triple neg, 1.7cm, node neg... .Treated with 4 rounds of A&C only....I have to tell you back in "05 I dont think Stage 1 women were routinely given the taxanes, even if they were triple negative.  I received treatment at MSK and I think they are kind of stodgy when it comes to new treatment.  They kind of alluded to a taxane trial I could be in for 2 extra rounds which might include taxol or more A&C...I declined as I did not know what was going on back when it all started.  I had such a life threatening experience with the 4 A&C that I don't think I would have been given more chemo even if it was offered....Yet.....Puddin (and I love the name you chose, as my wonderful Long-haired cat is named Puddinhead!).....I too worry about being in this minority of women who have just had the 4 rounds.......But...there are many women who have done well thanks to enduring the "A" of the A&C combo....I have to wonder....what is it about the taxanes?   It is so new...where are the numbers indicating how much of a boost it offers?    I could go on and on in circles on this topic...I try not to dwell....but thank you so much for starting this post....We should stay in touch! 

LRM216

I really do think it was the timing of your earlier protocols, Puddin, as I checked some other sites and it too seems a lot of the gals that are triple neg and had chemo earlier than I did had AC only as well.  If you are not comfortable with the present onc then definitely seek out a second opinion from another onc, but what has she/he had to say about using the taxanes now?  The protocols are changing all the time - look at the new parp - I just read something by Dr. Wiener (sp?) of Dana Farber stating the major benefits that all triple negs will see once it becomes "standard" chemo for triple negs in a couple of years.  See?  We will all have missed the parp inhibitors having been unfused in our treatments.  It just keeps changing and changing, which I guess is a good thing, but yet everything still seems to remain the same, as nothing seems to come with a damn guarantee.  God, I hate this freaking disease.

Linda

Morgan513

I did 4XTC but when I was diagnosed I connected with a 10 year TN survivor who did only 4XAC and declined T.

Lorrie 

unklezwifeonty

Pudding dear, if I were given a choice I'd have skipped Adriamycin but definitely taken the Taxol or Taxotere. The benefit of Taxanes after Adriamycin is definitely proven. That said, are you getting new primaries or recurrences? Also, please have your Vitamin D levels checked and supplement with Vitamin D3 if needed.

Titan

I did 4 ac and 4 taxol dd...it even says by the doctors on this website that they would always use a taxane with tn's.  I'm glad that is what my doctors did,..even though I was freaking out about all that chemo...I feel I had the most aggressive chemo possible...think is called 3rd generation chemo which is the heavy guns

Sugar77

Puddin' - I have a friend who had TN nine years ago and I believe she had AC only.  She's doing really well.  Also, as I posted above I just finished TC (no A)...so the I think the regimens vary from person to person. 

puddingirl84

Pennylane- I had a longhaired cat. I would often cuddle with him and call him "puddinhead my big head boy" and kiss him. I had to put him to sleep just two weeks before I started chemo in 2007. That was such a dark time for me. He was my companion and took naps with me everyday. I have his ashes in a little wood box on my bookshelf and a plaque with his paw print on it. I still miss him and now I am afraid to get another because I am afraid to deal with loss again,and so many what ifs. And if I am not worrying about it getting sick then I would worry about what if I get sick again, and who will love him and care for him like me. 

Your Puddinhead is beautiful. Thanks for sharing.

Puddin' 

pennylane

Hi again Puddin....Just checking in with you...Kind of glossed over the ramifications of your being dx with triple neg again....So sorry you have to go thru treatment yet again...So unfair that you fell into that other end of the fairly good stats given to Stage 1 women...Sounds like you are on to a solid chemo regimen that you have faith in.  You know, I did poke around the internet re the 4 rounds of AC only for stage 1 back in 2005...Seems like we just missed out on the findings from the Dec 2005 big bc conference in tx....That is when they promoted the benefits of routinely adding taxanes for early stage women...I think we would have gotten a 3% boost...just numbers, I know...and yet...By the way, the  little cat in the hat in my picture is actually Pennylane....She is the lovely sister of the handsome longhaired Puddinhead....He sounds just like your beloved...He sleeps with me, and is too heavenly for words....I have a strong feeling you will be just fine now...It is time!   Best wishes, P

puddingirl84

pennylane- Thanks for the well wishes. Nice seeing you again.

Puddin' 

Titan

My "indoor" cat..who was outside today..got himself a mouse and brought it up on the porch to torture...thank heavens the poor little mouse was already in mouse heaven....He is supposed to be an INDOOR lap type cat..I think he has other ideas...and yes..he has been neutered.