TRIPLE NEG PLEASE READ..

Kargy:  So sorry you had to join us here, but you will get much support, answers and understanding here.  I too am triple neg, and just want to say, while the chemo was a horror for me (AC & T) - I did get through it all.  I had every side effect one could have, but please know I am an exception to the rule.  All I can tell you is what my onc told me at my first visit.  Triple negative is a nasty sneaky cancer - and even with my "early" diagnose - it has come back on many with the same stats as I have.  Since we have no known drugs for triple neg, other than chemo works well on our agressive type cancer, she suggested I hit it as hard as I could as I only have this once shot at killing it.  I pray everyday that I have annihilated it - but still the shadow follows me every day and night.  My suggestion is to use all the big guns you can.  You may suffer very little side effects, but even, like me, you have the nasties - this too shall pass - I promise.

I wish you the very best and a very placid journey.  God bless.

Linda

I'm not a very religious person but...I feel that God presents us with the help that we may need...and for tn's chemo is it..

I am not a god fearing woman nor am I religeous at all, however, I do believe that chemo is the one thing you must do-especially if it is in your nodes.  I have a very dear friend who had chemo first, Bilateral MX, radiation, over a 2 year period of time and they recommended another round of chemo because the cancer disintegrated in her breast which means that it could travel.  She decided not to and now is fighting for her life Stage 4.  Give it all you have--chemo is very powerful for TN's and we are lucky it is so responsive to treatment in most cases.  I did 6 rounds of T/C prior to my MX with relatively few side effects, and the chemo killed all of it. 

Hi Kargy,

Your faith will be your strength as you go through chemotherapy.  For me, my faith was like a muscle that got stronger, as I exercised it alot through this journey.  Chemotherapy was a tough road for me, but I would do it again.  My oncologists told me that without doing chemo, just surgery, I had a 60% chance of recurrance, with chemo and surgery that bumped it up to only 30% chance.  My saying through the journey:  I was trusting the doctors do their part, I would do my part and the rest was up to God!  I had A/C DD x4 and taxol x1--allergic, switched to Abraxene weekly x 11 weeks, followed with six weeks of radiation.  God met me at everystep, He will meet you too....

Hi Kargy,

Throw the bus at this cancer! I had 4 positive lymph nodes and so far no recurrence after 2 1/2 years. Chemo wasn't easy ~ 4 rounds of TAC, then one AC, and then was fired from chemo due to side effects, but am happy to have tolerated 4 rounds of taxotere. The protocol is a little different now, so I am hoping and praying that you will tolerate the chemo with just the usual effects. Radiation therapy had it's own set of side effects, but for me was much more tolerable than chemo.

Accept all the love and support offered to you by friends and family...also only wore my wig about 10 times, used Wal-Mart bandannas the rest....wig was too hot during the summer.

Kathy

Thank you Kargy for this Topic!  We need POSITIVE and uplifting stories from TN survivors.  I am only just beginning my journey.  My story is similar to Daniel321 in that I was diagnosed stage 1, TN, no node involvement. I opted for the bilateral mastectomy because with all I had read about TNs, the rate of recurrence is high and I did not want to be doing this again in another year or two.  I am healing from my surgery and start chemo on July 30th. My ONC is doing four rounds of AC every other week and then four rounds of TC (Taxol and carboplatin) every three weeks.  The ONC said that TN's seem to do well with the platinum drugs and this must be new because I have not seen it in any of the posts.  I wonder if there are any TNs out there that are doing the carboplatin chemo after the AC.  

Thank you Daniel321 for your informative post.  I am terrified of chemo and hearing that it is tolerable helps.  It is the unknown that is terrifying.  These posts really do ease the anxiety for people just starting out. Thank you all for taking the time to share your stories.  God be with you.

I too have TN breast cancer. I've had Chemo since April. I've had 7 weekly weeks of Taxol. My left arm, knees and bones/muscle pain is unbearable.. I hope everyone find their own healing journey and ways to find comfort. Let's Beat it together..

Ditto to all the good advice offered here.

One addition; you mentioned that you eat out a lot.   Methinks you will be enjoying take-out during chemo b/c it is so dangerous to be exposed to other people's germs.    so maybe you could have a little collection of take-out menus. 

Sometimes it's those little things that make our kids feel the normal pace of family life continues.      My younger daughter was 13 at the time, and I recall her setting the table for dinner.   (Very precisely; w/o me asking her to do it).     No matter where dinner came from. A pizzeria or a neighbor.  Usually there were 2-3 nites per chemo where I could not join family for dinner.      I had to coach my husband to ask questions b/c I am the chatterbox as is my elder daughter who is and adult and lives on her own.   My major focus at the time was that my 13 yr old daugter would get thru it unscathed.   I can tell that your 11 yr old son is a big concern of yours; so I thought I'd just offer some advice on that topic.        

Glad to find a topic on Triple Negative. I had every side effect as well. I had a lumpectomy and 4 nodes were taken-all clean-1.5 cm tumor. I went aggressive, I am on my 4th treatment of Taxotere and Cytoxin-2 more to go. I also carry a gene similar to the breast cancer gene. The fifth treatment is this Thursday. As soon as I can after (last treatment mid-Aug), I am having a mastectomy and reconstruction and also need my ovaries out-higher risk for ovarian than BC if you can believe it. I am 42 with an 8 yr old little guy. It has been hard with the chemo, but am so glad I caught this early. Of course I am very scared of a recurrance. Staying positive though, but the chemo is beating me down!

What sides effects did you have?  What does the acupuncture do for you?  How often do you get it.  Are you working?  I like so many of you start my first dose of AC tomorrow 7/29/2010.  I will receive a total of 4 dose every 2 weeks then start on Taxol, 4 dose every 2 weeks.  I am very scarred, but of coarse know this is what I have to do.  I am strong person in good physical shape, have worked of most of my life, running, cycling, skiing etc. hopes some of this helps.  I am an RN in the operating room and was planning on working some during this, my oncologist thinks I'll be able to.  I am getting the first dose of AC tom. what should I expect for Friday, Saturday and the weekend?

Thanks so much for you input.

I thought I would chime in here as I also have been doing acupuncture. I started last July right after my first mx and am still doing it. Not only does it help with the side effects, but it helps tremendously for anxiety and insomnia. I am also getting help with my immune system as well as helping with tightness and pain from my last mx and now the recon process. I am a firm believer that this works. At first I was like anxious about the needles and thought that was silly after everything I had been through! 

Pamcycle, I've been getting accupuncture weekly since starting chemo. I ask the accupuncturist to focus on whatever my most pressing side effect is on that day, sometimes nausea, or fatigue, or loss of appetite. I had bone pain with my first Neulasta shot, and that week I asked her to focus on the bone pain. Somehow the accupuncture helps.

This is my first adventure into accupuncture, and I've been surprised by it. At a bare minimun it is relaxing, I often fall asleep on the table and I'm not a napper, and the relaxation lasts for a couple of days. It has helped my system work more "normally", and I think has given me some energy. Frankly, nothing much helped after the last AC treatment.

I also exercise, and every day I could I've done Pilates or Spin classes or walked, even if the rest of the day was spent resting.  I don't work outside the home, but if I did, I don't think I could have the weeks after my last two AC treatments. (Maybe the second week, but not the week of treatment.)

I've had one Taxol treatment, three days ago, and I've been bopping around almost like normal since then. I get tired in the afternoons but overall its a blessed relief after the AC. I realize the Taxol effects are cumulative, but I'll take the good while it's here. 

HI Everyone.  My name is  Carol and I am 53 with no children.  I am switching over from the E5103 study discussion group.  Unfortunately I was alergic to Taxol and decided to get out of the study since I would only be getting the study drug (or placebo) and no other chemo.  Since I have read that chemo is good for us TNs I decided to stay with the chemo alternative. (once they unblinded me I did find that I was getting the study drug so I did get 5 doses).  I just had my first Taxotere this last Thursday.  I will have it every 3 weeks x 4.  Under the study I had 4 AC and 1 Taxol.  I have been  very lucky.  My SEs have been minimal.  I work full time and only take of 1/2 day for chemo and then my Dr/medical appointments.  One of the worst things for me is taste.  None of the things I love the most (Pepsi, chocolate) tastes good.  My friends have been wonderful and are very supportive.  Family (??).  Both of my brothers live out of state and they are boys - they don't understand the seriouseness of this.  Unfortuneately my mother passed away last month and that week was very hard on me.  My best friend from FL is visiting this week and I have really enjoyed the company.  Makes a big difference.  Well I guess that catches you up on me.  Stick with it - don't let the SEs get to you.  Together I hope and pray we all make it through this and can still be talking to each other 10 years from now, espcecially those of you with young ones.  If anyone lives in the Chicagoland area, maybe we could start a dinner group like once a month?  Any thoughts? 

Mitymuffin- Thanks for the advise. I am seeking an accupuncturist today. I'm so glad your 1st Taxol went well. I have 4 more days before I start. Last AC whipped me. Feeling good today.

My prayers are with all of you.