Chemo Protocols that Work on ILC

Katarina
Katarina Member Posts: 386

Hi All,

 I know we all are ILC but different in some key prognosis factors: tumor size, nodes involved, ER / PR / HER2, BRAC etc. 

I've been told by a number of Onc that ILC is less responsive to Chemo than IDC. Okay. 

My questions to anyone who wants to share:

1. What was your chemo treatment protocol (drugs used)?

2. Did you cancer go into remission after first treatment?

3. How long have you been cancer free (no recurrence) since ending treatment (chemo/rads too if applicable)?

 My ONC did a "Target Now" test on my specific cancer biology and has i.d. a regime for me. I would just like to know what varieties and types of chemo drug protocols for ILC are out there and how successful they were for you. No, I'm not with consumer reports (LOL) but just a need to talk and learn type of person. Heck, that's what our Onc's are doing in treating us so we have the right to share the same ;-)

Thanks for sharing in advance!!

 Kat 

«1

Comments

  • nowords
    nowords Member Posts: 423
    edited May 2011

    I had 4 rounds of dose dense AC prior to surgery.  I had a 1 to 3 % chance that it would do anything..., but because my tumor was so large, I went with it....pathology after surgery showed no response but PET was clear. I am 2 years out...I know some also get a Taxane but the Oncologist thought that the risks out weighed the potential benefits so I did not do it. I did do rads. You cans see my stats are similar to yours...I was BRAC negative.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    I had AC and paclitaxol initially and doubt that it worked with the news I've heard recently about this and ILC.  I did have good results for around 2 years with an AI (Arimidex) - normal tumor markers without any SE's.  The TM's are my only real measure since my ILC does not show up on a Pet Scan.

  • Racy
    Racy Member Posts: 2,651
    edited May 2011

    If ILC's response to chemo is reputedly low, why is chemo the standard of care?  (I just googled some studies that confirmed low percentage responses to neoadjuvant chemo in ILC patients.)  

    I have just completed adjuvant chemo (6 x TAC) and am now wondering if it was worth it as a preventative for distant recurrence? Neither of the oncs that I consulted with before starting chemo indicated that ILC had a low response rate.

    I am interested in any comments on this - thanks. 

  • Racy
    Racy Member Posts: 2,651
    edited May 2011

    Further to my post immediately above, I just re-did my cancer math calculation and it indicates a prognosis benefit of about 7 % with chemo as opposed to just hormonal therapy.  That is the reason that I did the chemo.

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2011
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Interesting article from 2006 - around the time I was diagnosed.  Thank you for providing the link. I discussed this issue with my latest Onc.  She is a researcher at a University and she concurred with the data in this article - gives me a little faith in her.  She also stated that the AC/Pac that I was given initially was the best thinking at the time but that thinking has changed. 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2011

    The thing is, that lower grade cancer does not have as good a response to chemo as grade 3. I had a Grade 2 IDC at the time I was having chemo for my grade 3 HER2+ve ILC and the chemo had no effect on it, except maybe it kept it from growing and spreading. We didn't know it was there at the time as it had been missed on my initial mammogram.

  • ma111
    ma111 Member Posts: 1,376
    edited May 2011

    I had Taxotere, Carboplatin and Herceptin before surgery, than 7 weeks of rads. Even though the chemo was harsh, Taxotere is a platium and Carboplatin a Taxene which is required to be elgible for some clinical trails. There are some good vaccine trails out there, however you have to be treated with the best chance of cure possible first. They have such good results with vaccines they are starting to study them in stage II neoadjuntivly. clinicaltrails.gov

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2011

    ma111, Were you stage IV from the start? I would agree TC is harsh, but does it work for ILC that is the question? At this time it is being given for all stages without knowing if it will work. I'm hoping the current trials will give us a better picture.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2011

    Hi 

    I had 4 rounds of A/C with radiation and am on lupron/femara.  My onc always said that the hormonal therapies were the most powerful things in the arsenal-- my oncotype was 27- so we decided on the chemo--I consider myself cured..... so does my onc.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2011

    ma - taxotere is the taxane and carboplatin, the platinum drug - you have them around the wrong way.

    I had TCH x 6 due to the HER2 status.

    Sue

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2011

    Sherri - what grade was  the tumour - I think the grade has more to do with response than type of bc.

  • ma111
    ma111 Member Posts: 1,376
    edited May 2011

    Kira1234,

    The TC or TCH, if Her2+ is a first choice with a lot of the oncs in a difficult situation. It put me into the operable status by some distant nodes disappearing after the 3rd round.

    The point I was trying to make is that one has to have certain chemos before you will be considered for a clinical trail. The vaccines are only in the trail status. If she went with AC, she would have to do more chemo before the vaccine. The vaccine responds better with the less rounds of chemo that you have done as it works by boosting the immune system. There have been some good results with vaccines.

     So, my advise is to go with the big guns to start with. The TC also works better for chemo resistant strains.

    If there were a for sure answer to the questions of which one worked best, than the question would not exist. She didn't say what stage she was or if there were any nodes on the films.

    I did go into remission after all treatment even though they could not remove all the postive nodes, (Rad boosting killed what was left over). That would have been the time I should have started the vaccine at John Hopkins. The National Institute of Health has a vaccine for measurable disease.

    http://www.guideline.gov/content.aspx?id=14311

    http://www.ahrq.gov/

  • lauri
    lauri Member Posts: 267
    edited May 2011

    AC DD x 6 followed by 12 weekly T followed by radiation followed by Armiidex ... I'm now 5 years and counting.  sometimes annoyed that nobody really knows if I needed the Taxol (which left some neuropathy) but I feel like we threw everything available against the cancer. 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2011

    Sherri - that is really interesting. The reason I had been researching response to chemo was because of the 2nd undiagnosed one sitting there all the time I had TCH. I found out it was a rare subtype of IDC that is usually found in lots of nodes. I was node neg, so I'm hoping the chemo did actually have some effect on it.

    Sue

  • Gitane
    Gitane Member Posts: 1,885
    edited May 2011

    Hello Katarina, I was diagnosed with pleomorphic lobular Grade 2.  There was a lot of cancer in my breast.  I had AC dose dense x 4, pre/post MRI's and post mastectomy pathology  showed >95% reduction in tumor volume.  I then had 2 more dose dense AC because chemosensitivity testing showed that the residual tumor cells would not respond to any of the taxanes or platinums but would still respond to the AC.  I've been on Femara since finishing chemo in Jan. 2006.  My oncologist told me up front that in his experience ILC rarely has a PCR, but pleomorphic lobular is affected by chemo.  I wish I had had a PCR, but I'm still very glad that I had a good response.

  • Cyborg
    Cyborg Member Posts: 848
    edited May 2011

    I have ILC and I am scheduled for 4 rounds of taxotere and cytoxan. And then comes radiation.

  • Cyborg
    Cyborg Member Posts: 848
    edited May 2011

    I have ILC and I am scheduled for 4 rounds of taxotere and cytoxan. And then comes radiation.

  • Katarina
    Katarina Member Posts: 386
    edited May 2011

    SherrieG, what does TAC stand for?

     it sounds like you have a benchmark to start with _pre-op tumor and neo-adjuvent treatment to test reaction which was good. I'm struggling with some acronyms.

    I was told ILC is not responsive to chemo but I have to have it since I have "angiolymphatic invasion". I want all your "true" stories.

    Has anyone heard of the TARGET NOW test?  My ONC did that on me and he's come back saying Taxotere and Cytoxan -- but these sound like standard chemo treatments for IDC too.  

  • kar123
    kar123 Member Posts: 273
    edited May 2011

    Hi,

    I had 4 treatments of adriamycin and cytoxan followed my 4 treatments of taxol.  I had a 7+cm tumor, but when the pathology came back what was left was 3.5 cm and very "holey" and "swiss cheese" like.  I consider that a good response.  My surgical margins came back negative and I had 1 node and 1 micromet node out of 7.  I was Grade 2.  I am considered stage IIIa, but because of the chemo, my pathology says stage II.  So there was definite improvement with chemo for me.

  • kar123
    kar123 Member Posts: 273
    edited May 2011

    Hi,

    I had 4 treatments of adriamycin and cytoxan followed my 4 treatments of taxol.  I had a 7+cm tumor, but when the pathology came back what was left was 3.5 cm and very "holey" and "swiss cheese" like.  I consider that a good response.  My surgical margins came back negative and I had 1 node and 1 micromet node out of 7.  I was Grade 2.  I am considered stage IIIa, but because of the chemo, my pathology says stage II.  So there was definite improvement with chemo for me.

  • Ellie1959
    Ellie1959 Member Posts: 316
    edited May 2011

    I did 6 TAC's - and 34 radiation tx's and now 4 years of tamoxifen - I had surgery first, bilateral mx and reconstruction.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Katerina:

    I know that you are looking for feedback from Stage III women but felt that I had to tell you this.  From December 2010 - till April 2011, I was on Carboplatin/Paclitaxil (a taxane) and it did absolutely nothing for me.  Let me restate that - the Carboplatin did totally ruin my blood chemistry while doing absolutely nothing for the ILC.  I'm onto another regimen entirely - just finished second cycle.

    Just an aside on this new chemo - to qualify for it you must have failed on AC and a taxane!  I'd love to know how many ILC patients met this test and are on this new drug!

  • Ellie1959
    Ellie1959 Member Posts: 316
    edited May 2011

    In response to SherriG - mine were given at the same time too - they were wicked weren't they???

  • JSwan
    JSwan Member Posts: 81
    edited May 2011

    I am doing neoadjuvant hormone therapy to shrink my tumor before surgery.  I was told that my Grade 1 ILC tumor probably wouldn't respond to chemo.

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2011

    I am getting tc. I did not want A because I read a research article that said many woman are ending up with heart damage from it,

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2011

    nurse ann

     I am not clear which med are the new ones you speak of

  • konakat
    konakat Member Posts: 6,085
    edited May 2011

    I was dx-ed as Stage IV ILC from the get-go.  I had 4 cycles of A/C and it wiped out my liver lesion.  Just to be cautious, I went ahead with the 4 cycles of dose dense Taxol.

    Herceptin and Tamox didn't work for me  (I'm 70% ER+)-- recurrance in liver and bones after the year of Herceptin.  AIs don't work for me either -- had major progression on an AI.  So it's been chemo that been keeping me alive the past 4 years (taxol, gemzar, carboplatin, navelbine).

    Edit to add:  That the cancer was ILC really had no impact on the chemo I got in the beginning (before mets was confirmed).  Lots of people, regardless of BC type (i.e. ILC), get the same initial treatment.  ER and HER2 status are much more important in choosing treatments.

  • Ellie1959
    Ellie1959 Member Posts: 316
    edited May 2011

    My oncologist told me yesterday that he only ever saw one patient with heart problems from Adriamyacin -

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Merilee:

    It's Erubulin/Halaven used on Stage IV women that failed on AC & a taxane.  Since I had AC/Pac at diagnosis, I qualified.  One could also read into this that the failure of the AC/Pac is why I'm Stage IV although I got good coverage for a two year period from my AI before progression.

Categories