Calling all TNs

Guess I didn't word that right Titan. I meant I just remember there being more (not all) women with the same treatment plan as me at the time. I don't see as many signature lines with TC anymore.

Stupidboob- Sure wish there was just one "magic bullet" we could all take to eliminate all cancers.

gia44: you had only ac because your lump is 1 cm. was reading this somewhere that if lump is 1cm or less chemo may not be recommended, but since we are triple negatives, leaving the 1 cm thing just like that without chemo is dangerous. so i think AC was given to you. dose dense is the new protocol for triple negatives, but many still follow the three weekly one. DD protocol has 5 year survival benefit of 92 percent and the three weekly protocol has 5 year survival benefit of 90 percent.

AC followed by Taxol is the gold standard for triple negative cancers, my oncologist always insists, but only in the adjuvant settings. however in the neo adjuvant setting FEC followed by Taxol is what is largely used.

My lump is 1.4 cm with nodes clear. I finished surgery and i am undergoing dose dense ac plus taxol.

Third cycle of Ac done and counts have dropped majorly..they got reboosted and the next AC has to get postponed by a few days and its dose titrated by 10 percent too. Dose dense is harsh on the body. i hear dose dense taxol is better..lets see.

wish you all a lovely holiday season... and many more in the years to come

love n hugs!

Welcome to all of the new newbies. Your journey might seen long but believe me the chemo will go by in a flash and soon you will be looking back at it.  All the ladies on here are a goldmine of information and will help you all the way through.

Stupidboob I'm sorry you lost your little Skittles. It's always so hard when we lose a pet.  Hope your PET scan goes ok for you.

I read an article recently about, I think the Doctors name was Dr Hope Rugo, on how some recent experiments show promise on fighting TN and she hopes the treatment will be available within five years. Earlier would be marvellous if they could but at least they seem to be on to it.  So hopefully some hope for us girls.  

Jan I wish with everything I have that, that treatment comes well before five years. You are right it will help our daughters and granddaughters. I have two of each and would hate them to go through this illness.

I too am worried about about Karen. She posted me her telephone number ages ago now and I can't find it anywhere. I just need to know she is ok.

Yep it is very warm here but to me very welcome. I'm not built for the cold and feel it greatly when winter comes so it's nice to warm up my old bones with some heat.

gia444: Just seconding Kathy's point... if you're wondering about your treatment, check it out with your onc and put your mind at rest. Taxol and taxotere are both taxanes; the first can be done on a biweekly or weekly basis; taxotere is usually done triweekly (and is more common in Canada and Europe). There's some research that suggests that taxanes can be particularly effective for TN, but because TN has so many different types, that's certainly not hard and fast. Some women here who did neoadjuvent chemo got a better response from taxanes, and some from AC. Some may be more prone to suffer side effects from one or the other or both. Node involvement may come into play in treatment choices too.

gia444 - just for your reference, I had a lumpectomy on Oct. 2013, and since Nov. I am doing dose dense 4 AC followed by 4 T.

Hello everyone. Got a call first thing this morning and they worked me in for PET scan so no breakfast. lol going for that this afternoon and for Portal surgery in the morning, Onco on Friday to get the plan.

Ok, I am trying to find out if any of you were weakly positive on the Estrogen side?  During my treatment, I was told that I was triple negative!  Basically breezed through all of the treatments, never missing work except to take the treatments!!  But now that I'm "all done", the MO through me a curve!  He now states that since I was 2% Estrogen Positive that he would like me to take Aromasin for 5 years!  I have been reading about the side effects and they seem to be worse than the chemo!!  This really has me in a tiff - I do not know what to do, take the treatment or refuse for quality of life and run the risk of recurrence and wondering if maybe I should have taken it!

This cancer is a terrible thing for the mind to have to deal with!  Right now, I'm dealing with quite a bit of back pain, which has only appeared since I've finished the Rads, and I was not given any warning that this could happen!  Told the MO and he is sending me of OT!  He said he saw no reason to do any scans!

This just all scares me more than the original diagnosis and treatment!  Any input would be greatly appreciated!

Titan, thanks for the reply. I don't think the rash is caused from any heavy lifting.  I have had it since I finished radiation which was July 2012. Some days it seems to be worse than others , it does hurt or itch.

nettie- I am 3% positive, but my MO treats me as a true TN. He said the side effects of Tamoxifen or Aromasin outweighed the benefits it would provide. On one hand I'm glad I don't have to take it, on the other could it help prevent a recurrence? Who knows what is right or wrong! I wish I could give you some reassurance, but cancer is a crapshoot. We can do everything "right" and it can still come back. It is a fear we all will always have.

slowloris I sent you a private message.   One thing that helps me keep going and it does not work on all days it Joel Osteens mom.  She was terminal 31 years ago and she is still going strong and she is healthy.  I try to hold on to all the survivors out there.  I am friends with a lady (not TN) but breast cancer and she had other cancers as well and she just had her 12 year.  I personally think this is something we will live with the rest of our lives.  It sucks and it is scary as hell but I "TRY" to just be thankful I am still here, but I am really scared of my Pet Scan coming up.    Best of luck to you.  

Btw, anybody out there who couldnot take dose dense ac?

I started off with DD ac, and after completing 3 cycles my bone marrow refused to recover, inspite of one shot of neulasta.

Emgrast injection was given twice on day 8th and 9th respectively and then the body recovered. Now my oncologist is asking me to postpone it. We were planning 4 but  had to postpone it by 6 more days, since he wouldnt be available then and my fourth and last ac will be given on a reduced dosage.

I wonder is this normal, for the bone marrow not to recover in a particular cycle, and then postponing chemo with reduced dose and all... dont you think having to postpone it by 6 days is too much.

your feedback on this pls

stupidboob, I'm new to this thread, but I'm so sorry you lost your pet.  I'll be in your pocket along with everyone else on your pet scan.  Waiting for test results is the hard.

I had my second AC infusion yesterday.  So far, things have gone much better than the first infusion when I BP bottomed out for a week.  They gave me more fluids and ran the infusions much slower.  It seemed to do the trick.  I gave myself my Neulast shot a couple minutes ago.  It wasn't nearly as nerve wracking as last week.  Knowing those shots cost $10,000 each make me scared I'm going to screw something up.  I must have done it right last week because my WBC was normal yesterday before my infusion.  After 12 weeks of taxol and retaining about 20% of my hair, this AC is taking what's left of it pretty quickly.  Eyebrows and lashes too.  Oh well, I feel fortunate that I had at least some hair for so long.  I knew this was coming.

I'm more concerned that my tumor has basically stayed the same size for about 6 weeks now.  I thought one night that the AC had really shrunk it, but the next day it was back to the same size from outside manual palpation.  They don't do scans were I go unless they think the tumor is actually growing.  I'm concerned I'm going to be in the 60% of neoadjuvant patients that do not get a complete response.  I've decided to fight this cancer with everything I've got this last six weeks of chemo.  Vegetable juicing, exercise, yoga, mediation, no salt, no sugar, vitamin d, you name it...I'm probably trying it!  I want to give this cancer the double whammy!  Right now, my tumor measures 1 cm from the outside which means it's probably closer to 0.5 cm. It has shrunk from the original 2.3 cm as measured by ultrasound and MRI, but it still seems to have a ways to go.

I should have my BRCA results in two weeks.  If positive, I definately want a BMX.  If negative, my surgeon and MO both think lumpectomy is the way to go.  I'm not so sure particularly if there are live cancer cells left at the time of surgery.