do all tnbc get chemo?

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    ok - I'm not sure that's what TC means, but I think it does. The doctor said the words quite fast, and all I really remember was that one started with T and one with C ...



    Yeah, I'm useless sometimes!



  • Skippy123
    Skippy123 Member Posts: 11
    edited January 2008

    Very interesting thread!



    I'm triple negative diagnosed July of 2007. My original tumor was 3.6 cm. I'm from Austin, Texas and went to Scripps in La Jolla for a second opinion! Both oncs and my surgeon agreed that I should do chemo, then surgery, and then radiation.



    After a couple of rounds of A/C, my tumor shrunk! I completed 4 dose dense rounds of A/C (nasty) and 12 weeks of weekly Taxol. My scans are measuring my tumor today at 8mm! I'm having a lumpectomy next Friday.



    Of all the research I've done I thought that chemo was a triple negative's best hope!



    I would love to meet you gals out in San Diego soon. We are there about twice a year. I have family in Coronado!

  • ravdeb
    ravdeb Member Posts: 3,116
    edited January 2008

    TC could be cytoxin and taxotere (or taxol). That is one of the common combos for tnbc.

    That's an interesting combo..that carboplatin added to the Taxol. They weren't giving carboplatin for triple neg when I was treated in 2005 and Taxol for triple neg with node negative was not being used, either. I did get the taxol anyway because I fought for it and won!

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008
    Well guys, I've just finished re-reading all your comments and now have to make my decision. Chemo is tentatively scheduled for Feb. 8th - if I want it. I had to have a second surgery because the margins in the first were too thin. The second one came out just fine.

    So ... boy do I wish there were some hard statistics on how many percentage points of a difference it is for recurrence for triple negatives if they had the chemo vs. not having it. I almost wish my tumor was larger so this would be an easier decision. Almost.

    The thing that struck me the most was when my oncologist said that at this point they might be able to cure the cance. Later if it spreads they can only treat it. Have to admit I'd be a lot happier with a cure than a lifetime of treatments.

  • twink
    twink Member Posts: 1,574
    edited January 2008

    guitarGrl, I hate to say this, I'm a bit of a stickler on this point, but... There is NO cure for cancer.  You see, so many non-C folks think that once you're done treatment, you're cured.  But you're not.  You may be, hopefully will be, NED for the rest of your life, but most of us will always worry about recurrence. 

    Anyway, I digress...  doesn't it suck that there's no right or wrong answer in so many of the decisions we have to make.  You end up, I ended up, just doing what I thought was the lesser or two evils, the least wrong decision....  Just decide to do what you can live with.   Being triple neg myself, I think I'd go for it...

    Hugs.

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Twink, Sadie and everyone else:

    This is Cookie - I am so confused now - I was dig 12/14/07, had a lumpectomy 2 wks ago, 4.6cm, no lymph node involvement, sentinal and 1 axillary taken, good margins, that special blood test to see if there is any cancer floating around in your system, that came out ok too.

    So, what is the best and newest treatment for triple negative with my stats? I have read so much that it am sure each article contradicts the other.

    I get my port on 1/29 then start chemo, but not sure what. Originally my Austin oncologist said AC plus taxel every three weeks and radiation. I am now in AZ and this Dr. was going to talk to the Austin dr. the AZ wants to "tweek" the protocal a little. He said he'd like to give it to me every 2 weeks and use Taxotere.

    So, now what, what questions should I ask him? I think I prefer what he is saying as opposed to the Austin oncologist, but I just want to get this taken care of for good.

    Oh, also the radiologist here in AZ was very positive. He said he really didn't care about being triple negative. He said it is cureable and that's all we're concerned about. He is in the same office as the oncologist and they talk all the time about each patient.

    thanks

    cookie

  • twink
    twink Member Posts: 1,574
    edited January 2008

    My opinion only but, as triple negative I prefer...

    Taxotere over Taxol

    Dose Dense (2 wk cycle) over regular (3 wk cycle)

    And I'd ask about a platinum.. carboplation or cisplatin.

    Just my opinion Cookie.  Glad to hear you made it to AZ. 

    Hugs.

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    Ah Twink -



    you said it in passing, and I'm going to add some emphasis "what you can LIVE with." That's the issue - what helps you live and live well. And there's no @#$%ing statistics for us!



    I did send email to another doctor in town asking if she had time to do a second opinion.



    susan

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited January 2008

    Hi Cookie,

    It is so nice to hear from you.  I was thinking about you this week.  Your results are very good!  I agree with Twink about the platinums.  I had carboplatin with taxotere and so far that's done the trick.  I had three rounds of AC, but that cocktail didn't work for me.

    Sounds like you are getting good information from you oncologist.

     Take good care of yourself and have fun with your friends.

    Warmly,

    Sadie

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Thanks Twink - you always make everything better! I mentioned Cisplatin to the Oncologist in Austin (previously worked at MD Anderson until a year ago) said Cicplatin isn't used (so I assumed she meant because this isn't metastisized (sp). So I will have to discuss it with this Dr. in Casa Grande, AZ

    Does that blood test I just had make any big difference? I don't know how much weight is put on it.

    Cookie

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    There was a conversation with a guy, I believe from New York, who was looking for the best help for his older mother with triple negative. Someone suggested another site for him to go to. Does anyone know that site? I just saw it the other day but can't find it now.

    Thanks

    Cookie

  • twink
    twink Member Posts: 1,574
    edited January 2008

    My oncs don't rely on the tumor markers (I assume that's the blood test you're referring to).  Some do use them routinely.  Cookie, I wouldn't rely on them, personally.  Again, my opinion only.  Ask about Carboplatin as opposed to Cisplatin... not sure if that will make a difference in the response you get.  I don't have mets and my U Penn onc put me on 4 treatments, 3 weeks apart.  Others do it in combination with the Taxotere.  I didn't because I'd already had the neoadjuvant chemo (ACX4, TaxotereX4)

    ((Cookie))

    Wish I were in AZ soaking up some sun and warmth too.

  • twink
    twink Member Posts: 1,574
    edited January 2008

    That site is probably the TNBC site or NoSurrender's site.  I think I posted the links on another thread.  I'll do a search and post tomorrow morning.. time for bed for me (yawning)...  g'night.

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Ladies:

    I am so sorry for being such a pain. I just looked at my complete blood results. The nurse said the Dr. said it was ok. I now have a copy of it and I don't know what most of it means but all the numbers are within the high/low range but one.

                                          test     result                    low            high

    Does anyone know what RDW  15.1     H       %      11.0           14.0

    Whatever rdw is it is high and I don't know if that is ok, good, bad. Why did the nurse say the results came back ok?

    Cookie

  • Sofie
    Sofie Member Posts: 23
    edited January 2008

    Hi Susan,

    Thought I'll chip in here. My mom was also in a similar situation as you when she was diagnosed with a 1 cm receptor negative tumor in Sep last year. We were told by the oncologist that chemo was optional. So I brought her to see two other oncologists who said doing chemo for a triple negative was a no brainer - she should do it.

    Ultimately, the decision is still yours. Its something that you should be comfortable with. My mom's decision to finally do the chemo was to have no regrets should the cancer recur - she had done her best.

    As for the chemo combo, because of my mom's age (she's 68), the doctors didn't push for AC+T (mom also preferred a shorter chemo course) or TC (TC was still considered relatively new then and the docs adopted a more conservative approach with the AC) so she just went through a normal 4x AC cycle. Now, I do wonder if we did enough or should have pushed for the newer drugs. But I guess we did the best we could at that point.

    Take care,

    Sofie

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited January 2008

    The T could be Taxotere too.  I had taxotere and carboplatin during my treatment.

    Sadie

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    Sadie & Sofie -



    thanks for the info. I'm about 90% decided to do it. There's this decision chart put out by the American Cancer Society listing all the parts that go into a decision. Under 1 cm, technically no chemo, but since .9 cm is soooo very close to 1 (I'm not a mathematician, but this is not rocket science), and since >1 cm automatically gets chemo, I think it's the right choice.



    The T is Taxotere and the C is Cytoxon. I did get a second email decision from another oncologist in town who specializes in breast cancer research and she agreed it was the right thing to do. So now I just have to be brave and call the doctor ...



    Susan

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited January 2008

    Susan,

    It is such a tough decision!  This is only my opinion, but from everything I've read says that triple negative breast cancer responds really well to chemo therapy.  You also want to address any cells that could  have moved to another area of your body.  I think it is the best insurance we have right now even though it is not a guarantee.

    Sometimes stats change too. When I was diagnosed my tumor was reported as 3.9cm, but after more tests during treatment my oncologist clarified that it had been 5cm. 

    I wish you didn't have to make this choice, but you can do it.  How many treatments do you have to have?  I had 9, but the first three were CA and that cocktail didn't work for me, so I had to have 6 more rounds of taxotere and carboplatin. My treatments were three weeks apart. 

    Thinking of you today,

    Sadie

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    Sadie -

    I decided to do it - called the doctor this morning (well talked to whoever answers the phones). This hospital has a pre-chemo tour of the place, where they also talk about what to expect, so I signed up for that too. Don't want the whole thing to be too weird & new.

    And now I get to go out & see if I can find a hot-pink wig. I don't know why everyone goes for stuff that looks like their real hair - I figure this is a time to try out new looks!

    Thanks for your help & advice

    Susan 

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Good luck to you Susan.  Don't look back -- eyes straight ahead and ready to take this thing on.

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited January 2008

    Hi Susan,

    I had fun picking out my wig.  I went shopping before I started treatment.  I tried on lots of different colors and styles.  The woman who helped me was so patient.  I think she really enjoyed her work. 

    I nearly went blond--I have medium brown hair.  I would have, but it washed out the color in my face to much, so I settled with one with red highlights.  I think my insurance paid for it.  You need to get a prescription though.

     You'll have to take a picture of your pink wig and post it.  Have fun with it!!!

    I agree with Twink-focus on the goal.

    Warmly,

    Sadie

  • dunner1
    dunner1 Member Posts: 49
    edited January 2008

    Dear Susan- I think you have made the right decision. You will never have to look back and say, "if only I had done chemo". I am almost five yrs out after having dose dense AC and Taxol. Just think you are going into WWIII and you are going to win the battle!!!!!! My only advise is take your anti-nausea pills. It is not as bad as your mind is probably telling you. If I had to do it again, I would in a heartbeat. Best of luck to you!! Dunner

  • Miraclegirl27
    Miraclegirl27 Member Posts: 6
    edited January 2008

    Hello All!  This is my first posting here.  I have read most of the prior posts.  I can tell this is a very caring, supportive group.  I was diagnosed with Stage 1, 1.5 cm, Triple Negative and Tumor Grade 3 on December 6, 2007~at 66 years of age.  From my research, most caucasian women my age to not get the Triple Negative type.  I had a lumpectomy on December 21 and sentinel node biopsy.  The margins were clean and two lymph nodes were negative for the Big C.  I completed the MammoSite 5-Day Targeted Radiation on January 18.  I have been to two oncologists.  They both urged me to have chemo~Taxotere and Cytoxan for four treatments three weeks apart.   Both oncologists used the Adjuvant! On Line website to give me a 10-year relapse percent.  Without chemo my 10-year prognosis is 'alive without cancer' 57%, 'relapse' 28% and 'die of other causes' 15%.  With chemo, my relapse percent improves only by 5%. The week of February 4 I will have a CBC, CA27.29, echocardogram and a CT Scan.  Apparently, these tests are required before beginning chemo.  If the CA27.29 and CT Scan come back 'clean', I have decided to not take the chemo.  I just can't put myself through it!  I live alone, 60 miles from the treatment center and have no close friends/family out here on the High Plains to help me out. Also, I have weighed the negative side effects of chemo vs the only 5% improvement in the relapse rate.  I have a 2 out of 3 'chance' of being cancer-free in 10 years!  I will be one of the two who are alive, vibrant and  full of life!  I have great faith that I will be taken care and healed by my Creator~I feel like I have already been healed as a matter of fact. I am marching forward, in faith, knowing that 'All is Well.' Like each of you, I never thought I would be posting to this website.  Are any others of you foregoing chemo?  I have not read any posts  about it.  We are all in this together~being in one anothers cheering section!  Thank you all for your support and being in my 'cheering section.'  Jeanne

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Hi Jeanne and welcome.  We all have to make decisions we can live with and sounds like you've done so.  I opted for chemo but my circumstances were a little different.  Good luck to you.

  • Miraclegirl27
    Miraclegirl27 Member Posts: 6
    edited January 2008

    Thanks Twink for replying to my post and wishing me well.  How are you doing?  You seem to be very active on this board and spending time supporting others.  You are doing a great job! Jeanne

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Hi Jeanne,  I like this board and do spend a fair amount of time particpating and, hopefully, supporting.  It's tough when you're first diagnosed and I remember those times and feelings all too well.  I don't get the benefit of hormonal therapies at this point, my treatment is done (as of Jan 9th) and this place allows me to divert energy into helping other women.  Thanks Jeanne..PM if you need anything.

    T

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Susan:

    You're too funny. My 7 year old granddaughter has a pink wig and my husband took my picture in it and I sent it to all my friends and relatives. Some actually thought I was going to use it! I wanted her Hannah Montana wig but she wouldn't part with it.

    There are some funnies in all this mess. I was just telling my friend today, heck when I lose my hair, that means those 2 darn hairs that always grow on my chin will be gone - Yes!

    Cookie

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Jeanne:

    Could you please break down the %'s for me and explain them. I don't understand them very well. Am I correct, from online you learned that you have a 57% to be cancer free in 10 years without chemo? I'm not good at math and I have notes from my Dr. but don't remember what the numbers mean. I do know he said if I do nothing I'd have  65%, but I don't know what that means, 65% to be cancer free or 65% to get it again or what?

    I hope you saw my other message, it was long but the short of it is that everyone I have talked to and read says that triple negative should get chemo and I think maybe even radiation, not positive about that though, but for sure on the chemo.

    Cookie

  • Miraclegirl27
    Miraclegirl27 Member Posts: 6
    edited January 2008

    Hi Cookie,

    Thanks for replying to my post.  I will try and clarify the % info you asked about.  There is a website oncologists use to help their patients in making decisions about chemo.  It is called Adjuvant! Online.  (You can probably get a copy from your oncologist as patients don't have access to it.) The oncologist enters the following patient information to get the percentages: age, comorbidity (other health problems), ER status, tumor size, positive nodes and then calulates this information for 'relapse.' The 57% in my personal case implies I will be alive and without cancer in 10 years without chemo.  The possibility of me having a relapse is 28% during those ten years.  Then there is a 15% chance of me dying from other causes i.e., car wreck, heart attack, etc.  With chemo my relapse % would drop to 23% and 'alive and without cancer' would improve to 62%.  I hope this  info helps you.  I sure wish you all the best during your chemo treatments.  You take good care of yourself.  OK?  Feel free to pm me if you want.  Jeanne

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