curious about chemo....

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scrappy_survivor
scrappy_survivor Member Posts: 149

I have been reading & seems few of you have had the same chemo I am on. Now I am worried if I am on the wrong chemo treatments.

I had a dbl mast in Nov. 2 sent. nodes removed both negative. I had a grade 3 tumor it was 3 cms. I was an 8 out of 9 on the nottingham scale for aggressiveness & I am triple negative. stage II

My chemo is Fec-D

I get 3 rounds of fec every 3 weeks is the time frame. Then I will get 3 rounds of D every 3 weeks. Does this sound right to you guys??

I was offered the Avastine study & took it but I was chosen randomly to be monitored as part of the stufy & not to get the drug. :( I had hoped to get it but no such luck.

Please help. I am mom to 4 & am so scared I won't be here to see them grow up. My youngest is only 14 months. I found the lump while breast feeding when I found the lump it was 1.3 cms but in the 3 months it took to get to the point of removal it grew to 3 cms.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    My chemo was FAC (5FU, Adriamycin, Cytoxan) first then Taxol/Taxotere last.  I think your chemo sounds fine.  Adriamycin is the sister drug of Epirubicin (the E in your first combo).  There is a general treatment standard but some doctors may tailor it to fit the patient and specific situation.

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited January 2009

    Hi there.  I got A/C, Taxol and Avastin (I did a trial).  What does the D stand for?

    Thanks

    Teresa

  • scrappy_survivor
    scrappy_survivor Member Posts: 149
    edited January 2009

    I tried to get Avastin but I was selected to be part of the trial & ended up being one of the ones that gets watched but does not get the drug. It was a 50/50 chance. They stand for:

     

    F Fluorouracil E Epirubicin C Cyclophosphamide D Docetaxel (Taxotere®)
  • tibet
    tibet Member Posts: 545
    edited January 2009

    I have every two weeks EC and weekly taxol and carboplantin. I did not get Fluorouracil. Did I miss something?

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    momof4stars,

    Your treatment is not standard for the US.  I see your in Canada.  But I've heard of a few people getting it here. Also did you have any issues with your MUGA test for the heart?  This combo is less stressful on the heart.  So this combo is sometime given.  I'm sure your chemo is fine.  Taxotere and  Cyctoxin are used here as  first line of treatment,  They are now not all the convinced that Adriam. is the perfect drug for TN as they thought.  But it is too early to change standard protocol for TN with early stage disease.  More studies are needed.  They are thinking Ixempra will be the first drug in a few years. Again more studies need done. They have not also proven that Avastin is necessary for early stage disease either.. That is why it is still in trials. So the best thing to do is ask your doctor why he chose this chemo combo.  There is more than one way to skin this cat.  Remember many early stage TN ladies have beat this disease without Avastin or any of the new drugs.  The key is early detection and good surgery that shows clear margins. You have been blessed with that.

    I hope you can talk to your doctor and feel comfortable with his comments.  You need worry about taking care of yourself in chemo and hugging them kiddies.  There is no perfect fit all solution for any of us. You must have faith in your treatment whatever it is.

    Flalady

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Mom, if it makes you feel any better.  You and I had the same treatment and I am a 5 year survivor of Inflammatory bc.  It did a great job for me. 

  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2009

    Hi

    I am er/pr neg too

    Had FAC plus Taxotere, smae schedule. My tumor grew rapidly2-9cm, over discovery to removal(6 weeks), also had 2 positive nodes. Scared witless in the early stages....

    I am also Her 2 + so received Herceptin on top of that.

    3 years later still NED ;))))

    Sounds pretty aggressive to me , your plan...

    Don't dispair...hug your kids for me!

    Good luck!

  • Indigoblue
    Indigoblue Member Posts: 274
    edited January 2009

    I was offered the same treatment as yourself.  Later, I chose to go with the oncologist who suggested Adriamyacin, Cytoxin, and Taxol for 12 weekly treatments.  I think if I were younger or older, the treatment would have bee FAC because they like to save the "big guns" for later.  As long as you are able to withstand the treatment, they like to save the best for last...perhaps, now that Avastin has been approved by the FDA, you will be elligble for it later on. 

    My turmor grew from  1.0 to 1.7 and extremely leggy, like an octopus.  It also was found that the lymph nodes were clear; however had obviously emerged in the surrounding bloodstream.  Meaning, the microcells were likely travelling around my body.  Who knows how long the turmor was there, I suspect 12 years, 10, maybe only a few.  It was a basal subtype, and the doctors were never honest with me about the prognosis.  I think it stinks that they were not honest about the facts and left me wondering.  It continues; thanks, er, no thanks to the surgeon and my soon to be forgotten husband.  He lies like a dead fish, and honestly, there is noone I can trust. 

    All I ask is to give me the truth; and meanwhile, I have to lie down, submerger in the I don't know's...you are lucky to have the physician you do; at least you know the facts, and are not suffrering while suffering to know what cards you have been dealt.  My husband is such a fink, a liar, a two-faced creep, he probably knows much more than he's saying.  I need to find a physician and a surgeon willing to speak up and tell me the truth.  Enough is enough..

    Thank you for your post.  It really made me look at my life and the last 3 years of misery and mystery.  I am at this point where I've just about had enough of the BS.  I am holding you in my arms and prayers.  You are too young to have this turmoil in you life. 

    Love,

    Indi

  • scrappy_survivor
    scrappy_survivor Member Posts: 149
    edited January 2009

    Thanks to all of you for your help. I just want to be here for as long as possible just like everyone else. I asked for the most aggressive treatment for my type of cancer my onc said this was it.

    Flalady what is the 1st line in the states?? I know you are well informed on things what would you have asked for in my shoes?? My next onc appt is tomorrow.

    To me it is not if I can handle it. I WILL handle the strongest thing they can give me if it will help save my life. Period no discussion on that one. :)

    I tell my kdis I am doing everything I can I want to mean that & really do it. I hate when my 9 year old asks if I am gonna die. I know my 5 year old things it but is affraid to ask. He just constantlyu says I love you instead. Now won't sleep at his friends & he has been doing it for 2 years. He is affraid. :(

  • TorchSong
    TorchSong Member Posts: 348
    edited January 2009

    Hi Momof4stars--

    I'm in Windsor too, also TN, similar grade and stage, as you can see from my sig--and on the same regimen--FEC X3, then TaxotereX3. It seems pretty standard here in Canada.

    Hugs to your kids--you can't promise them you'll be here, but you don't want to scare them...I can't imagine how tough it might be. My son is 20 and it's hard enough... How is your spouse/partner handling it? Kids seem to take cues from their parents. Also, you may want to talk to their teachers and let them know what's going on, if you haven't already.

    Hugs to you and PM me anytime--I check my email constantly!

  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited January 2009

    Hi momof4stars

    I too live in Canada and had the same tx as you will be getting. FEC + Taxotere 3 rounds of each this last summer. It is an aggressive tx but for us triple negs who don't have the added punch of  the herceptin or other hormone drugs I wanted to give it all i had!

    I found the FEC very tolerable, no real nausea, but kept up with the med schedules they gave me. My major problem was with my blood counts going low so had to give myself Neupogen shots each round to bring them back up.  The taxotere was ok too, wouldn't want to do it again but made it through.

    Just keep up with the positive attitude as i think it makes the world of difference and you will do fine. When do you start your tx?  Good luck! 

  • tibet
    tibet Member Posts: 545
    edited January 2009

    Is the FEC+taxotere more aggressive than the AC taxol and carboplantin which I got? Does anyone know? thanks

  • g94u67
    g94u67 Member Posts: 436
    edited January 2009

    Hi there!

    What a forum. I can so relate to all the anxiety and fear your feeling Momof4!  I personally am in the U.S. and went through 4 TX's of A/C (every 3 wks) and now am doing 4 TX's of Taxotere every 3 wks. I have responded very well to the A/C. My tumor shrunk dramatically and I was able to have a lumpectomy. However now I'm in the boat of just discovering that I tested positive for the BRAC1 deleterious gene mutation. I now have to consider having my ovaries removed. (Has anyone done this? If so, please PM me). Let me tell you that was a shocker.

    I don't know if you're a spiritual person, but my faith has helped me immensely. Like Flalady has said and others, if you respond well to chemo and it's early, we have a really good chance for survival. Think positive!

    I'm sure you will do okay with chemo and you're on the right type of drug. It's going to be the hardest thing you go through but the support you'll receive will be great. This is a wonderful site.

    Prayers & Hugs,

    Jeannine

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    There you go Momof4stars...g94u67 is doing the new treatment options that have came out this year.  In the US A/C with Taxotere or Taxol is pretty standard as the first line of treatment.  Again if you have other health issue this will change.  Heart being the big one.  Some are having Carboplatiun added on the end. This changes by your node involvement and tumor pathology.

    I just spoke with a girl that did ACT and than they let her do Ixempra because of so many nodes positive.  I love my clinic and how progressive they are. She the first I heard using this with early stage disease.

    Flalady

  • tibet
    tibet Member Posts: 545
    edited January 2009

    Hi Jeanine

    I recall you don't have family history so how could you carry the BRCA1 gene? Did the doctor explain to you?

  • scrappy_survivor
    scrappy_survivor Member Posts: 149
    edited January 2009

    Thanks for all the help ladies. I will have to have a chat with my doc but could not before tomorrow's chemo as he was away at conference & I did not want to discuss it with the covering Dr. As for the gene... I have not been tested & won't till chemo is done. For me it would not have changed my treatment but I want to know for my kids & sister's. Also I am having a complete hysterectomy when chemo is done too. I don't need those parts & with my family history I am not taking chances. So g94u67 I have not yet had it done but it is part of my plan of action or war that I plan to wage against this horrible disease. I plan to have my hysterectomy in May.

  • g94u67
    g94u67 Member Posts: 436
    edited January 2009

    Hi Newalex,

     Yes. That's WHAT I thought. However my grandmother on my dad's side had bc (in her late 70's) and ultimately passed at 84. It has to be her. No one on my mom's side has bc. I asked if anyone else on dad's side had it and he says no.  Onc. nurse told me sometimes the genes passed on by our father is much stronger. Go figure??? 

    My Doc. told me I don't have to make a decision now, but suggested removing the ovaries is good prevention. I'm with you momof4...we need ALL the prevention we can get.  I'm a little worried about insurance coverage.  My doc thinks it will be covered. Oh I asked her why we use A/C here and in Europe & Ont. they use FEC? She told me that if reoccurance should happen in far enough years, they might administer A/C up to 8 doses because we haven't hit "the tolerance limit" whatever that means! 

    So I'm on the new TX option huh FL lady?  Many others at my clinic are on A/C and TX (Not TN but many HER2+)  I thought it was the standard.  Good info you provide here!  You sure are well informed.

     Jeannine

  • tibet
    tibet Member Posts: 545
    edited January 2009

    Hi Jeannine

    I think FEC is older regiem while TAC or ACT is newer, I think but maybe wrong. They replaced F by Taxol a few yrs ago. So in Europe where I am, we use EC and taxol in general. The E is better than A in general because it works the same way and has less heart toxity but it is way more expensive than A. But the rest are the same.

     Did you have AC T?

  • g94u67
    g94u67 Member Posts: 436
    edited January 2009

    Hi newA

    Yes I am on ACT. I am now on Taxotere.  Ugh. I think it's worse than the A/C!

     Jeannine

  • tibet
    tibet Member Posts: 545
    edited January 2009

    Jeannine

    Why did you take taxotere after ACT?

  • kranie
    kranie Member Posts: 33
    edited January 2009

    Hi there,

    I started 6 rounds of Taxotere/Cytoxan in Dec. I am TN, BRCA1+, grade 3, 9 out of 20 positive nodes. I feel as though I am not being treated as aggressively as I could. Any thoughts? I brought it up with my oncologist and mentioned avastin, which he said is still in trial, but somehow, the discussion went no further. I need to write down specific questions for next time. Any suggestions?

    Karen in Pittsburgh

  • tibet
    tibet Member Posts: 545
    edited January 2009

    Is carboplantin better than avastin for TN? Anyone knows?

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Carbo and Avastin are to very different drugs.  Avastin is not really a chemo.  This drugs is used to stop the blood supply to the tumors.  Right now it is not approved for early stage disease.  But many of us have taken this drug outside of trials for recurrence's or very aggressive early disease. In other words a lot of nodes positive or possible skin involvement.

    Flalady

  • SoapMaker
    SoapMaker Member Posts: 157
    edited January 2009

    One thing about triple negative is the tumor does tend to grow fast. It is an aggressive cancer. That being said, that is why the chemo generally works so well. The chemo is designed to kill fast growing cells. That is also why your hair comes out. They are fast growing cells. I would rather have TN than have positive receptors any day. Once we make it to the 2 year mark, chance for recurrence drops dramatically. Once we make it to the 5 year mark, we are at the same level with the positives who have taken tamoxifen for five years. After the 5 year mark, we are back in the normal population of women who have the 1in 8 chance of having breast cancer. According to the researchers, not one has seen a recurrence in TN women who have made it to the 8 year mark. So, yes, I would rather have TN over positive receptors any day. Women with positive receptors have to worry about recurrence for the rest of their lives, or until the cure finally comes. Some have been cancer free for 20 years and then have a recurrence. Don't be afraid that you got negative receptors instead of positive receptors. If we just HAD to have bc...I truly think WE got the better deal. 

    ------------------------------------------------------------------------------

    Where is the cure???

    www.truefacesofbreastcancer.org

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Cin56,

    Please show me the research that says TN is the disease to have?  I have study it aggressive for three years.  NO where does it show this is a positive thing.  This is why so many are scared and come to this section.  The percentages are against many of us.  Higher chance of recurrence in six months or less.  Higher chance of going to liver, lung & brain. That is why so few make it too the golden number of two years.  It getting to the two year mark disease free is the problem.  Many TN are chemo resistant...I'm one and I can name you other's on this site right now.  Check out our fellow sister's in the recurrence section.  Many of them our TN.

    The big key to TN and the new ladies, will be the finding better chemo's and what doses to use.  Most of this happen in just the last year.  I do believe the future does look better for TN that for many even diagnosed just a few years ago. 

    Bottom line still is we have the disease that the medical community knows the LEAST about.

    Flalady

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited January 2009

    Karen,

    Avastin is being used in early stage breast cancer in a clinical trial E5103 as well as other trials.  You can read more about the trial on the board "help me through treatment".  I just completed this trial Nov 10, 2008

     Teresa

  • SoapMaker
    SoapMaker Member Posts: 157
    edited January 2009

    FloridaLady, it's posted somewhere on this forum. NOT that it is the disease to have, but the fact that if we can get past a certain point, we have less risk of recurrence. The report is somewhere on this forum. I read it on here and elsewhere, regarding the time factor. I can't remember exactly how long ago it has been since the report was posted...maybe a couple of years??? We use to have a poster who would find all of these scientific reports and post them for us. I can't remember her name. I do not have the time to go dig for it, but you should be able to find it on this board, if they archive. Maybe one of the older members has an idea. Best to you.

    Edited to add:

    PS...I do understand what you are saying and my heart goes out to any sister battling this disease, TN or otherwise. TN, like I said, is an aggressive cancer. Both my daughter and myself had it. I'm at 6.5 years and my daughter is just over a year out (gene tested and non inherited). I know that some women are going to be resistent, but many are not.Yes, the problem is getting to the two years and finding the right combination of meds to combat it, but many women DO make it.These women need hope, not fear in coming to the TN section; hope to get to that two years...not fear that they won't make it.Fear is enough to knock anyone down.

    -----------------------------------------------------------------------------------------------------------------

    Where is the cure???

    www.truefacesofbreastcancer.org

  • SoapMaker
    SoapMaker Member Posts: 157
    edited January 2009

    I decided to delete this. Though it gave hope to many TNs, it may have frightened others. I chose to remove it.

  • tibet
    tibet Member Posts: 545
    edited January 2009

    I recall I read that article Cin56 mentioned which Gina posted. You can find that article in Gina's site. The article was from 07 and was again republished in October 08 BC Watch issue which Gorrila posted once and it is called " New Appreciation for TN".

    It basically concours what Cindy 56 says that for TN, the risk of recurrence during first 3 years are higher than ER +  but if past 4 years, it drops and post 5 years the recurrence (mets) has drops to absolute zero which is unheard of for any other type of BC. So after 8 years no recurrence, one can consider herself cured. (We have some ladies on this board passed the 8 years, such as Gina herself, and Dandilion....)

    It also says, TN responds better to chemos, even first generation chemo that are not used today than ER +. In fact, that article also quotes in one Italian study called Nora Study, they followed thousands of patients in 77 Italian BC centers on medien 27 months and found that contrary to other studies that TN patients do not have poorer prognosis than ER+. In the long run, if one like Cin 56 is 6.5 years out from TN, then her chance of distant recurrence drops to nearly zero, while if she were ER+, she could have recurrence risks whole life because ER+ cells grow slowly and may not respond well to chemo because chemo kills cells that are fast dividing.

    So I don't agree with Floridalady that TN is generally not responding to chemo. It should say TN generally responds well to chemo than ER+ but there are some exceptions that do not respond to chemo.

  • tibet
    tibet Member Posts: 545
    edited January 2009

    Floridalady

    You say that so few TN make to 2 year golden mark. I don't like to hear that and I disagree. My doctor once showed me a Canadian study comparing ER+ and ER -or TN early stage patients, that the 5 year survival difference is 8 percent and the ER- 5 year survival is around 80% - 85%.

    Seveal friends on this site who are in early stage, were told by their doctors that their recurrence risks are around 10% - 20%. My onc told me my risk is 15% to 20% because I had one tiny little micro mets in first sentinal node. Had I had no micro mets in that sentinal node, the risk of recurrence would have been lower.

    I also read once that after 3 years,TN patients are doing significantly better than ER+ patients.

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