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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Chemo Protocols that Work on ILC

Topic: Chemo Protocols that Work on ILC

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 7, 2011 06:26PM

Katarina wrote:

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 

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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May 7, 2011 07:45PM nowords wrote:

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.

Dx 4/6/2009, ILC, 6cm+, Stage IIIA, Grade 1, 7/22 nodes, ER+/PR+, HER2-
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May 7, 2011 08:40PM nurse-ann wrote:

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.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 8, 2011 07:20AM Racy wrote:

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. 

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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May 8, 2011 07:55AM Racy wrote:

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.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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May 8, 2011 10:02AM kira1234 wrote:

When researching chemo on ILC found this article.

http://annonc.oxfordjournals.org/content/17/8/1228.full

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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May 8, 2011 11:32AM nurse-ann wrote:

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. 

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 8, 2011 02:31PM suzieq60 wrote:

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.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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May 8, 2011 02:40PM ma111 wrote:

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

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 8, 2011 03:56PM kira1234 wrote:

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.

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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May 8, 2011 04:41PM momand2kids wrote:

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.

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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May 8, 2011 04:43PM suzieq60 wrote:

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

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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May 8, 2011 07:12PM suzieq60 wrote:

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

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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May 8, 2011 07:48PM ma111 wrote:

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/

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 8, 2011 08:59PM lauri wrote:

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. 

From the ashes of disaster grow the roses of success Dx 3/8/2006, ILC, 6cm+, Stage IIIB, Grade 2, 11/12 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Mastectomy: Left Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast
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May 8, 2011 11:05PM suzieq60 wrote:

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

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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May 8, 2011 11:12PM Gitane wrote:

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.

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May 9, 2011 01:39AM Cyborg wrote:

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

Winning!!! Dx 2/23/2011, ILC, 2cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2-
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May 9, 2011 01:40AM - edited May 9, 2011 01:41AM by Cyborg

This Post was deleted by Cyborg.
Winning!!! Dx 2/23/2011, ILC, 2cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2-
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May 11, 2011 01:12AM - edited May 11, 2011 01:15AM by Katarina

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.  

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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May 11, 2011 09:38AM kar123 wrote:

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.

Dx 6/2010, ILC, 6cm+, Stage IIIA, Grade 2, 2/7 nodes, ER+/PR+, HER2- Chemotherapy 6/27/2010 AC + T (Taxol) Radiation Therapy 1/23/2011 Breast, Lymph nodes Hormonal Therapy 4/3/2011 Arimidex (anastrozole) Hormonal Therapy 4/30/2013 Femara (letrozole)
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May 11, 2011 09:48AM - edited May 11, 2011 10:01AM by kar123

This Post was deleted by kar123.
Dx 6/2010, ILC, 6cm+, Stage IIIA, Grade 2, 2/7 nodes, ER+/PR+, HER2- Chemotherapy 6/27/2010 AC + T (Taxol) Radiation Therapy 1/23/2011 Breast, Lymph nodes Hormonal Therapy 4/3/2011 Arimidex (anastrozole) Hormonal Therapy 4/30/2013 Femara (letrozole)
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May 11, 2011 10:19AM Ellie1959 wrote:

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

Dx 12/27/2005, ILC, 5cm, Stage IIIA, Grade 3, 2/12 nodes, ER+, HER2-
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May 11, 2011 11:19AM nurse-ann wrote:

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!

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 11, 2011 11:40AM Ellie1959 wrote:

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

Dx 12/27/2005, ILC, 5cm, Stage IIIA, Grade 3, 2/12 nodes, ER+, HER2-
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May 11, 2011 11:58AM JSwan wrote:

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.

Dx 8/12/2010, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Hormonal Therapy 8/20/2010 Arimidex (anastrozole) Surgery 9/13/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 11/13/2011 Breast, Lymph nodes
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May 11, 2011 12:03PM Merilee wrote:

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,

breastcancerbeast.blogspot.com & downsyduderescueranch.blogspot... Dx 4/4/2011, ILC, 1cm, Stage I, 0/9 nodes, ER+/PR+, HER2-
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May 11, 2011 12:11PM Merilee wrote:

nurse ann

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

breastcancerbeast.blogspot.com & downsyduderescueranch.blogspot... Dx 4/4/2011, ILC, 1cm, Stage I, 0/9 nodes, ER+/PR+, HER2-
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May 11, 2011 12:11PM - edited May 11, 2011 12:17PM by konakat

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.

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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May 11, 2011 12:13PM Ellie1959 wrote:

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

Dx 12/27/2005, ILC, 5cm, Stage IIIA, Grade 3, 2/12 nodes, ER+, HER2-
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May 11, 2011 12:21PM nurse-ann wrote:

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.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-

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