Chemo (Taxol) NOT working!

C-squared
C-squared Member Posts: 514
edited July 2015 in ILC (Invasive Lobular Carcinoma)

I was diagnosed Nov. 30, 2011 with ILC, ER/PR+, HER2-, 1/3 node+ 3.2cm tumor.  Weekly Taxol began 01/20/2012.  An US (same week) showed that the mass was 4.3cm.(already).  After 7 (of 12) treatments (Taxol) another US was done and the tumor is now 6.2cm-double the size of the original measurement!  Short story:  Taxol is not working!  Anyone out there have a similar experience?  Needless to say, I will be having surgery followed by AC.  Wish me luck!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2012

    Hi, Cathleen ~ I haven't had your experience, but since it's your first post and no one has responded yet, I thought I would stop and welcome you as a way of bumping this thread.  (And if you don't get some responses tonight, feel free to bump it yourself again in the morning -- so that it shows up on the front pages of Active Topics, above.)

    Anyway, your situation sounds a bit unusual -- not just that the Taxol isn't working, but that your mass appears to have doubled in size rather quickly.  It sounds like your doctors are on top of things, but if you have any doubts about your treatment, don't hesitate to get a 2nd opinion -- maybe even a 2nd opinion on your pathology.

    I'm glad you've found BCO, and I hope this bump will get you some additional input.   Deanna  

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  • mary625
    mary625 Member Posts: 1,056
    edited March 2012

    Dear Cathleen:  I have not been in exactly the same situation as you, but I have a few thoughts as to what could be going on.  For us ILC girls, traditional methods of imaging such as mammo and ultrasound are not always accurate.  Mine did not show at all on mammo and much differently on ultrasound (sort of one-dimensional and what was near the skin only).  The best imaging for me was an MRI, but even then, no one will really know the size until the surgery.  However, the MRI was pretty darn close.  I would suggest asking your doctor to order an MRI. I would also ask the surgeon and the oncologist what they think about the size of the tumor based on manual examination.  I got the feeling with my ILC that the exam was about as accurate as anything.  Also, they can tell if the tumor is softening and perhaps how the lymph node is responding.

    It sounds like your treatment plan is close to mine.  I had chemo before my surgery.  However, I had AC first, followed by Taxol.  Most of my tumor shrinkage was during the AC phase.  Are you sure that you will not have the AC before surgery?  AC is a tough chemo combination, but it seemed to be very effective for me.  I would not expect in your situation for chemo to relieve the need for surgery.

    I do wish you the best of luck!  You are in the right place here to get a lot of good information.  You will do well.  

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  • southsider
    southsider Member Posts: 69
    edited March 2012

    Hi Cathleen!

    Sorry to hear that your lump has increased in size.  it is terribly disappointing.  In January I discovered that Taxol was no longer working for me- I had been on it for nine months.  I was kind of shocked and horrified and I think my onc got a bit of shock as well.  Basically I had sudden acute problems with bone mets, and also progression to the liver.  I have switched to Xeloda, very recently, and although I have been on it a very short while, I do feeel that it is working.  It is a terrible shock when a treatment doesn't work, but I guess this is the rythm of our lives on stage iv.  Onwards to the next treatment!  i second the idea of getting a second opinion. 

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  • southsider
    southsider Member Posts: 69
    edited March 2012

    Sorry Cathleen, I thought I was posting in the stage iv forum, my post is not appropriate for you!  Sorry about that!

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  • dogeyed
    dogeyed Member Posts: 884
    edited March 2012

    CATHLEEN,  I was like MARY, I got the AC part of chemo before Taxol.  The AC shrunk my 5cm+ IDC (similar to ILC) cancer immediately, and pain I had been experiencing from the size of the thing went away, and this was after just ONE infusion of AC.  I have no idea if they can switch the Taxol midstream or what the reasoning is of your cancer team for going with T before AC, might be a very good reason.  But looks like they could either go straight to surgery or switch to AC now.  I have not had your situation where the cancer just kept right on going!  But I did have two out of eleven lymph nodes turn up positive, but keeping in mind I had had a scan up front that showed no spread and also they removed the nodes that didn't look right when I had surgery after all the chemo.  GG

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  • MrsMom2
    MrsMom2 Member Posts: 13
    edited May 2012

    had one dose FEC. 2nd dose EC, 3rd dose EC and cancer in residual local node disappeared! But also had chemosensitivity blood test done before starting chemo to see if these were the most effective drugs for my cancer.  Now onto 3 doses of docetaxal also called taxotere NOT taxol.

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  • crittermama1964
    crittermama1964 Member Posts: 8
    edited September 2013

    HI I JUST FOUND OUT YESTERDAY THAT MY TAXOL WASNT WORKING MY TUMOR AT FIRST WAS 7CM CAME DOWN TO 3 CM THAN GREW ON TAXOL TO 4. THANK GOD I DONT TRUST A SOUL SO I CONTIBUED BREAST EXAMS TO ENSURE GOOD RESULTS. I DISCOVERED IT GROWING. I HAVE MAMMO GRAM TODAY WITH ULTRA SOUND AND SEE SURGEON TUES. TODAY IS FRI. SEPT 5,2013. IM SURE THEY WILL REMOVE IT SOON. PLEASR DO YOUR OWN RESEARCH NEVER LEAVE FULL CARE TO ANYONE BUT YOURSELF.

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  • crittermama1964
    crittermama1964 Member Posts: 8
    edited September 2013

    HI I JUST FOUND OUT YESTERDAY THAT MY TAXOL WASNT WORKING MY TUMOR AT FIRST WAS 7CM CAME DOWN TO 3 CM THAN GREW ON TAXOL TO 4. THANK GOD I DONT TRUST A SOUL SO I CONTIBUED BREAST EXAMS TO ENSURE GOOD RESULTS. I DISCOVERED IT GROWING. I HAVE MAMMO GRAM TODAY WITH ULTRA SOUND AND SEE SURGEON TUES. TODAY IS FRI. SEPT 5,2013. IM SURE THEY WILL REMOVE IT SOON. PLEASR DO YOUR OWN RESEARCH NEVER LEAVE FULL CARE TO ANYONE BUT YOURSELF.

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