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How to deal with it

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Topic: How to deal with it
Posted By: Lanie
Subject: How to deal with it
Date Posted: May 22 2009 at 5:34am
I just found out that I have triple negative breast cancer.  I have seen an oncologist in fact two.  I had gone for a second opinion because it is hard to deal with.  I was given a choice of two chemos.  One more agressive
than the other.  The First is with doxorubicin, cyclophosphamide, and taxol. The second is cyclophosphamide,methotrexate and fluorouracil.
I am trying to find out as much as I can but don't know what to do or
which one to choose.  Can I choose the wrong one?  I have an apt.
June 2nd and will have to pick which one but I really don't know.  I don't know if I can handle this or deal with it.  I don't know if I'm strong enough
to cope.  Can anyone help me.....
Thanks,
Lanie



Replies:
Posted By: Diane in AZ
Date Posted: May 22 2009 at 6:45am
Hi Lanie,
 
Hon, I'm so sorry you have to go through this.  We all know what it's like, and are giving you big hugs right now.  It's scary and you feel completely alone, even when you're surrounded by loved ones.  Right now, you feel helpless because you don't know all the facts and you haven't started treatment.  This is a good place to come to share and read up on things you have questions about.  Also, ask lots of questions and take lots of notes when you go to your onc. Take someone with you to your appointments.  Sometimes they will remember things that you don't.
 
I know, for me, I felt better when I had my surgery and started treatment, because I was finally doing something to beat this.  Chemo will be hard, but you can do it.  You will have lots of help from your loved ones and the doctors and nurses are usually wonderful people.
 
Regarding your course of chemo, I'm not sure that you can pick a wrong one.  The important thing is that you do the chemo, because that's our main line of defense for triple negative.  The good news is that chemo is very effective against our tumors, much more so than our positive sisters.  I know my onc told me at the beginning that he was getting out the "big guns" for me because of that.  I don't know the size of your tumor or if any lymph nodes are involved but if it were me, I'd go as aggressive as I could.  Sure, you might feel like dog poop for the entire time and there might be some side effects, but we get one shot at this invader and this is the time to blow it out of our bodies.
 
Another thing to consider is how comfortable you feel with the two oncs you have seen.  Are they easy to talk to?  Will they answer your questions and not rush you?  Do you feel like they care about you as a person and not as a statistic?  How familiar are they with triple negative breast cancer?
 
I know this time is full of a lot of decisions.  Discuss this with your loved ones.  You can't make a wrong decision because you're doing something to fight it.  Please keep posting here and letting us know what happens in the coming weeks.
 
Big hugs and caring thoughts to you, hon. Hug
 
Diane


-------------
Diane

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all


Posted By: dmwolf
Date Posted: May 22 2009 at 4:05pm
Lanie,
How big is it and what is your node status and age?  Did you already do surgery or is this from a biopsy?  CMF is an older combination, AC&T newer.  The most data currently backs AC&T dose dense for triple negatives, though for many people CMF is fine too.    AC&T dose dense does show a survival advantage, however, of at least a few percentage points.  It is also, as you point out, more toxic, especially to the heart.  Have you looked into clinical trials?  There are some good ones, like one that combines ACT with avastin, and another couple that go with platinum drugs, which may end up being the standard for TNs.    If your tumor is large and/or you have obviously positive nodes, I'd look into a trial. 

Good luck, and sorry you are having to deal with this.  Believe it or not, you will get used to all this and even come out the other side stronger and more compassionate.

Much luck,
Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: cg---
Date Posted: May 23 2009 at 7:46am
Dear Lanie,
 
Without knowing your staging I went looking for articles. The first thing I do know is that CMF is not a commonly used chemotherapy in North America and especially not for triple negative. Please read the study I found and notice that even adding the Epirubicin (which is  like Adriamycin that is used in Canada and Europe in the FEC regimen) it was more effective than just CMF.
 
But the one general feeling by the oncologists who deal with TNBC and have an opinion - they include a taxane (unless there is an allergy), either Taxol, or Taxotere.
 
The National Epirubicin Adjuvant Trial (NEAT) and the BR9601 trial examined the efficacy of anthracyclines in the adjuvant treatment of early breast cancer.

Methods In NEAT, we compared four cycles of epirubicin followed by four cycles of cyclophosphamide, methotrexate, and fluorouracil (CMF) with six cycles of CMF alone. In the BR9601 trial, we compared four cycles of epirubicin followed by four cycles of CMF, with eight cycles of CMF alone every 3 weeks. The primary end points were relapse-free and overall survival. The secondary end points were adverse effects, dose intensity, and quality of life.

Results The two trials included 2391 women with early breast cancer; the median follow-up was 48 months. Relapse-free and overall survival rates were significantly higher in the epirubicin–CMF groups than in the CMF-alone groups (2-year relapse-free survival, 91% vs. 85%; 5-year relapse-free survival, 76% vs. 69%; 2-year overall survival, 95% vs. 92%; 5-year overall survival, 82% vs. 75%; P<0.001 by the log-rank test for all comparisons). Hazard ratios for relapse (or death without relapse) (0.69; 95% confidence interval [CI], 0.58 to 0.82; P<0.001) and death from any cause (0.67; 95% CI, 0.55 to 0.82; P<0.001) favored epirubicin plus CMF over CMF alone. Independent prognostic factors were nodal status, tumor grade, tumor size, and estrogen-receptor status (P<0.001 for all four factors) and the presence or absence of vascular or lymphatic invasion (P=0.01). These factors did not significantly interact with the effect of epirubicin plus CMF. The overall incidence of adverse effects was significantly higher with epirubicin plus CMF than with CMF alone but did not significantly affect the delivered-dose intensity or the quality of life.

Conclusions Epirubicin plus CMF is superior to CMF alone as adjuvant treatment for early breast cancer. (ClinicalTrials.gov number, NCT00003577 http://content.nejm.org/cgi/external_ref?access_num=NCT00003577&link_type=CLINTRIALGOV - [ClinicalTrials.gov] .)


FEC-T is the chemotherapy regimen used most in Canada.

Fluorouracil, Epirubicin, Cyclophosphamide PLUS Taxotere.
 
You are a wise woman to gather your information but another thing we must learn to do is to ask them to "SHOW ME" your studies that support your position that this would be the most effective regimen for your cancer.
 
Love,
Connie
 


Posted By: trip2
Date Posted: May 23 2009 at 8:41am

Hi lanie,

I have tried writing you last night and now today and my messages keep going poof, good grief I don't know what I am doing.
 
Check the News, Recouces & Tips Section in our forum, there is alot of information you might find interesting.  Also research on the internet.
Get a copy of your pathology report and all copies of your tests and scans.
 
Do you have any familiar history of cancer?  You might consider genetic counseling for the brca 1/2 mutation.  Many but not all TNBC women have the brca 1 mutation and this important information for you.
 
Go to http://www.facingourrisk.org - http://www.facingourrisk.org and look around.  You can also ask questions on their forum even as a guest.  They focus strictly on genetic information.
 
You are scared but as mentioned before as things move along you will begin to get a grip.  It is scary.  We were all scared and still get scared sometimes.  Talk to us, we will help you and be here for support.  You can do this!!
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Lanie
Date Posted: May 23 2009 at 9:03am
Thank you all for such great information.  I will do my best to research and
stay strong.  I am blessed to have all of you reply to me.  I can't thank
you enough.
 
Lanie


Posted By: vdq7015
Date Posted: May 23 2009 at 11:53am
Lanie, I know this really sucks right now but you will smile again. I celebrated 5 years post chemotherapy this week (NED) . I was in a clinical trial and agree with other post if you can get in one do it!!!. I had 4 cycles ac and 4 cycles of taxatere. Chemo was not fun but when ever you feel like you can't do it get on this siite and we will pick you up!!!Smile
Feel the Love and support coming your way!!!
vdq7015

-------------
tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006


Posted By: trip2
Date Posted: May 23 2009 at 1:02pm
Vdq7015,
 
Congratulatons on reaching your 5 yr mark!  That is wonderful.Clap


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: vdq7015
Date Posted: May 23 2009 at 2:03pm
trip 2
THank you THank you!!!! Live is wonderful!!!!


-------------
tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006


Posted By: NINASUZIE
Date Posted: May 23 2009 at 2:32pm
Hey Lanie,
 
Yes, we all know this overwhelming and overwhelmed feeling!  You are a jumble of emotions/reality or dream and they want me to decide WHAT?!
 
We DO understand exactly what you mean.  But, you are already rallying to do what is best for you-face it and kick it!
 
If they are offering you chemo first....my humble opinion is based on the size/stage/grade and particulars to your case, the chemo before surgery is a good option.
 
That way, the AC/T (CMF) is researched as secondary choice can change as your tumor responds...check out our chemo or surgery first tnbc talk for some background and articles.
 
And of course, let it out, any feelings are OK and we are here to catch you with hope, hugs, strength and understanding.
Hugs,


-------------
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11


Posted By: nzkav
Date Posted: May 24 2009 at 6:39am

Hi Lanie,

I am new in a way, I was dx in 07 and finding out more as I go, I had TAC as they called it or AC&T for my chemo (aggressive).  It was hard I won't lie, in the beginging the first 2 -3 I went to work, by the 4 one I could hardly walk from my bed to the bathroom, still went to work the whole time, I work at a great school and they were so supportive (six months worth, I think I glow now).  I would get a shot the day after for the nausia, it worked but it makes your joints hurt or at least mine did.  You will make the right choice for YOU.  I made it and so do many of our sisters.  We will all be here to support you and pray for you. 

Good Luck and know you are in my prayers.
Nadine


Posted By: Lanie
Date Posted: May 26 2009 at 4:25am

 Thank you for your support I really, really, appreciate it. I know I will back here for advice once I start my treatments.

Congradulations that is such great news. 
 
Lanie


Posted By: Lanie
Date Posted: May 26 2009 at 4:29am
Diane,
 
Thank you so much for your help.  I will let you know when I start the
treatments.  I know I will need all the help I can get.  I do appreciate
your help.
 
Lanie


Posted By: Lanie
Date Posted: May 26 2009 at 4:36am
I have had the lumpectomy and also a partial mastectomy.
I  am looking at the report and it says tumor size 1.3 x 1.2 x1.1 cm.  I think it might be a grade 2 but not sure what that means. I have been told
I am stage 1 BC.  I figured I should do the ACT It seems to be the
one that everyone does.
 
I know I will need everyones support I just hope I can be as strong
as the rest of you.
 
Thanks for being there.
Lanie


Posted By: caro36
Date Posted: May 26 2009 at 12:02pm
Dear Lanie,
 
You will get all the support you need from us. I've just finished my rounds of chemo and the women on this forum made sure supported me every step of the way. I won't lie, it was difficult. But with all the help and advice I found here I made it. So will you! Don't think you're not strong enough. You've found the strength to be your own advocate and look for the best treatment. It takes a very strong person to do that!
 
We will hold your hand every step of the way.
 
hugs,
 
Caroline
 


-------------
lumpectomy 9/2/08 6mm TN tumor
38 rads, 13 boost
6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10


Posted By: tracy5000
Date Posted: May 26 2009 at 12:26pm
Dear Lanie,

Keep in mind that everyone is different in how they react.  I found one of my biggest problems when I went through it was how sick it made me the first round.  After that, I got different medicine and wasn't nearly as sick.  Then, I just found it very hard to concentrate and that I tired out very easily. 

Good luck & hugs

Tracy


Posted By: Nancy
Date Posted: May 27 2009 at 7:30am
I reported this and the other 4 posts this person made in other threads.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Shelley
Date Posted: May 27 2009 at 6:58pm
I know how overwhelmed you feel right now.  I promise before long you will feel less so and more comfortable with your treatments, nurses, and doctors.  Its sounds like you have done the right thing getting a 2nd opinion and researching your options.  Don't forget to take lots of notes and ask for copies of everything.  This will help you later when your feel more settle and able to review and study things.  Just remember to take one day and one decision at a time.  This is a battle that can be fought.  Good luck and keep asking questions - someone will have an answer that seems to fit you just right.


Posted By: Shelley
Date Posted: May 28 2009 at 6:32pm
Nancy - Just wondering if it was me you were reporting and why??  Hope I'm not doing something wrong.  I noticed your reported note by one of my other comments.  ???


Posted By: Lanie
Date Posted: May 29 2009 at 8:17am
Shelley,
 
Someone had written a story with another web site on it.  I'm sure
Nancy is referring to that person.  The story might of been after or before
yours.
 
Thank you for your support and kind words I really appreciate it.
 


-------------
Lanie


Posted By: trip2
Date Posted: May 29 2009 at 8:36am
Shelley,
 
Nancy would be referring to the spam post by yours which the admin removed so it looks like she is referring to you but your safe.Wink


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+



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