AC regimen vs ACT

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member66
member66 Member Posts: 14

I would like to hear at least 5 years survivors for TNBC (triple negative invasive) who did only AC regimen without

paclitaxel (T), either decided do not do it from the beginning or stop Taxol due to neuropathy.

All studies show only 3 % difference (that's not statistically significant in terms of addition of Taxol, while taxol may cause permanent neuropathy). What the benefit of taxol if any.

thanks

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2017

    What is your type - DCIS/IDC/ILC/IBC?

    I'm not TN (IBC, ER+/PR-, HER2-) so a different DX but TX was A/C and Taxol. DX was 8 urs ago and still NED.

    I did 4 DD A/C neoadjuvant and 12 weekly Taxol adjuvant. For me, A/C did not slow me down at all but Taxol utterly and completely EXHAUSTED me - just existed in bed or on couch in front TV the entire 12 weeks. Never had any issues with neuropathy though. The EXHAUSTION started getting less daily a week after last infusion even though I started rads a week after last Taxol.

    Not everyone developed neuropathy from Taxol though obviously some do. There is no way to know what we, individually, will experience. Gain all the input from others experiences but we are each so unique.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited October 2017

    Hi, Member66 -

    I'd be interested in hearing from someone about this, too, since I have 3 more AC's to go before I start Taxol for my TNBC. Have you posted on the TNBC section of the forum? Might get more replies there.


  • member66
    member66 Member Posts: 14
    edited October 2017

    No I didn't. The two reasons why I don't want Taxol are first of all as one famous oncologist said it's only 3% difference by all studies and it's statistically insignificant.second of all I want to do radiation sooner than later as I had one node positive. And finally honestly being a biologist I think chemo is doing such bad things for he whole body that if not TNBC I will never even started it.

  • member66
    member66 Member Posts: 14
    edited October 2017

    kicks, answering your question, DCIS, TNBC, 1 node involvement, so they do want chemo, although I am not sure, that killing your body immune system is right thing to do. Feeling like crap after just first chemo, I will not do Taxols, no way, will start radiations and then will see. But why you did ACT if you are ER positive, why not only Tamoxifen?

    After the surgery I was hiking and running, now all I can be at work and then lay down the rest of the day at home with low grade fever and/or pain in the back from neulasta

  • muska
    muska Member Posts: 1,195
    edited October 2017

    Hi member66, you may find this study interesting: Comparison of Adjuvant Chemo Regimens for Early Stage BC.

    I am not trying to say you need to do taxol - I have no opinion and you should discuss with you MO. But speaking of 3% difference you mentioned, doesn't it mean that for 100 treated women there will be three more relapses/deaths if no taxol was done? Or am I misunderstanding?

    Speaking of taxol, dosage can be reduced and it can be stopped sooner if one doesn't tolerate it well.

    Best.

  • VL22
    VL22 Member Posts: 851
    edited October 2017

    I just finished Taxol #3. Compared to AC this is so far a walk in the park. Obviously there are side effects and I'm not at 100%, but it is very doable for me.

    My perspective with TN is that this is my one shot to do something. For me, possibly being 1 of the 3 extra women who doesn't die because of BC makes the Taxol worth it. I'm following all MO suggestions to minimize or not have SEs. Being extremely fit when diagnosed and at a healthy weight definitely helps.

    A year out of my life is going to be really suckish. In the grand scheme of it all, I accept that. Very personal choice

  • member66
    member66 Member Posts: 14
    edited October 2017

    Dear Muska,

    No, you are not right about 3% differences, its not 103vs100...The way those study calculated - its complicated statistic methods in which 3% for scientists consider like a non significant on a level of mistake of calculations....To be statistically significant the numbers should be more then 15%.

    But any way the one of the famous UPENN doctors (Fox K) told me when he was mentioning those 3 %, that it is not worth it if the side effect would even start appearing...he was meaning neuropathy. and so on for the Taxol...But for me to do taxol is also to postpone the radiation and I more likely will do radiation....But it is a hard decision I know, and that’s why I am asking and asking....I don’t even know that I am right doing AC for now, as all that my scientific brain (I wish I will be just person who believe 100 % to what doctor says) telling me that I am killing my immune system, messing up my normal cells genomic pool, and after that my fighter system will be not capable to fight against "wrong cells"...Sorry for so long "talk".....we can not to do experiment and control mice on ourself....

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2017

    member66 -

    My DX is very different than yours. I'm IBC (Inflammatory Breast Cancer). Only between 1% - 4% of all DXd BCs (DCIS/IDC/ILC/IBC) will be IBC.

    It does not form a 'lump' but forms as a 'nest' or 'bands' with no clear margins. It is rapid in presentation (literally often overnight) and aggressive progression (days can matter). Neoadjuvant Chemo (pre-surgery) is the standard TX with IBC to get 'it' to form into a 'lump' with margins and shrink for a better surgical outcome.

    For most IBCers, the TX plan will do 2 different Chemo both neoadjuvant - my TX was different though. I did DD A/C neoadjuvant and weekly Taxol adjuvant. The A/C did what was hoped for - get it to form a 'lump with good margins' and shrink for surgery. UMX went good with 'it' being removed with good margins and the 19 pos. nodes 2 weeks after last A/C. 3 weeks after UMX, 12 weekly Taxol was started to 'mop up' any 'stray/hiding' cells that might have still been there. I have been on Femara/letrozole for 7+ yrs and will be forever as a bit of 'insurance' being ER+. Femara was the first choice of my Chemo Dr as I was 19 yrs post menopause at DX. Tamox was never mentioned for me.

    My immune system was not 'killed' at all by my chemos. I had no infections at all during. Chemo and I did not stay 'home' away from crowds. Apparently the Chemo induced better immune system did succeed in getting rid of the chronic sinus infections I had dealt with all my life. Have only had a couple of minor sinus infections in the yrs since Chemo but always had several a yr before Chemo. I have no neuropathy.

    Rads were not 'nice' to me! I burned very bad taking 3+ mths to heal. I would have much rather not needed to do my TX plan with the accompanying issues but still being here 'today' living every day and loving it to the utmost, I'd do it all again in a heart beat if I needed to. We each have to make our own decisions based on what 'makes sense' to us - not what others say is the way to go.

    All of the different types of BC (and all the variables involved) are not the same with the same prognosis. Make your decisions on what your research/beliefs say is what is best for you and never second guess.

  • member66
    member66 Member Posts: 14
    edited October 2017

    Dear Kicks,

    thank you for your reply, one sentence in your reply bother me: "19 pos. nodes 2 weeks after last A/C"....

    so AC did nothing in terms of clearing up those nodes? Am I right? How medical oncologist explained that?

    I understand the point about shrinkage to the lump, although biologically I dont understand how that happen, but why it does not clear nodes?

    But you are ER+, right, so femara should do the job? For ER negative we do not have too many choices, looking on immune trials.

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2017

    There was nothing for my Chemo DR to 'explain'. My TX plan had always been to get the IBC 'nest' to form into a 'lump with good margins' for Surgeon to do UMX. Which neoadjuvant did all that was hoped for. A 'lump with good margins' at surgery and no Then adjuvant chemo to 'mop up' any cells not already gotten by surgery and A/C, with rads as a backup. Never was a complete pathological responds (all cancer cells gone) expected.

    IBC is rapid and aggressive. 1% - 4% of all BC DXs will be. 1 of 4 will make it to 5 yrs. My IBC presented overnight in a lymph node, was DXd a week later and TX started in 17 days.

    As the fast growing cancer cells are killed off by chemo, the area will shrink. That does not mean that all cells will be killed in all areas. But biologically, if cells are decreased, the area will 'shrink'.

    Femara/letrozole is to block the uptake to feed cancers that feed off of estrogen. So it is used for some of us (post menopause) who are ER+ to prevent future issues.

    You're DCIS. Not all are. What I (or others) have to do with out individual TXs based on our individual DX is not all the same. The vast majority of other IBCers will do 2 different chemos neoadjuvant which is different than my TX. What I did worked for me - still NED 8+ yrs since DX.

  • muska
    muska Member Posts: 1,195
    edited October 2017

    Dear member66, can you please clarify what you mean by saying "to be statistically significant the numbers should be 15%?

  • member66
    member66 Member Posts: 14
    edited October 2017

    Dear muska, its just mathematics or let's say statistics, when they calculated the data, 3 % difference can be just a mistake of calculation, but when its >10% or >15 % its unlikely to be a mistake of a calculations. But once more I am not trying to tell anybody Do not Do taxol, everybody decide for himself, I am just trying to make a point for myself....


  • muska
    muska Member Posts: 1,195
    edited October 2017

    Where does this 3% number come from exactly? What study? 3% of what? I am not trying to convince you of anything but if you like numbers you may find this review interesting: Progress in adjuvant chemotherapy for breast cancer.

    I am sure there were more recent studies about this topic. BTW, 12 weekly taxols are easier on your system than dense regimen.

    On a personal note, 4 years after completion of AC+T my immune system seems fine - actually, better than before if judging by the number of colds per year - and I have no neuropathy.

    Best.

  • member66
    member66 Member Posts: 14
    edited November 2017

    Dear Muska, thanks for the study, 3 % came from Dr.Fox from UPENN with whom I was obtaining second opinion for my case and he pointed out of this 3%, later on I found the study about it, see below, but I understand that there were much more studies with different percentages, everybody should decide for himself, I am not trying to convince anybody, I think we just trying to have as much as possible opinions and points of view, right?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC44933...

    Here the study and some of the points from it

    Adjuvant taxanes
    The first trial that established the benefit of paclitaxel added to AC in TNBC was CALGB 9344/INT1048. This trial randomized patients with node positive operable breast cancer to receive three different doxorubicin doses followed by further therapy with or without 4 cycles of paclitaxel every 3 weeks. The addition of paclitaxel resulted in a 17% reduction in the risk of recurrence and 18% reduction in the risk of death with an improvement in 5-year DFS and OS from 65% to 70% and 77% to 80%, respectively.


    But here is another study (and there are many of them) that show that low doses of paclitaxel cause liver (lung in other article) metastasis of breast cancer cells....

    http://onlinelibrary.wiley.com/doi/10.1111/febs.13...

    And this "side effect of taxol ", not the neuropathy, giving me many negative thoughts about paclitaxel....


  • muska
    muska Member Posts: 1,195
    edited November 2017

    Dear member66, the study referenced above was in mice.

    Have any recent studies confirmed this in humans?

  • member66
    member66 Member Posts: 14
    edited November 2017

    I know that its in mice....it will not be such studies on human, it can not even be. Imagine the name of the study, Determine whether paclitaxel can induce liver mts in patients with advanced breast cancer....Impossible...

  • muska
    muska Member Posts: 1,195
    edited November 2017

    I bet there have been studies that looked at the statistics: ## of patients with mets after taxol vs the same in patients without taxol. Or similar...

  • Marguin
    Marguin Member Posts: 21
    edited September 2020

    Bumping this to see if anyone knows of other posters who only had ac or threads pertaining to ac chemo only.

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