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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 07:26PM

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!!


Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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May 11, 2011 02:31PM Ellie1959 wrote:

Well SherriG - we are still here to bitch about it! That's what I always say!Cool Must have done something  but it was pretty brutal. In retrospect though - you do realize how tuff you are!!!
Dx 12/27/2005, ILC, 5cm, Stage IIIA, Grade 3, 2/12 nodes, ER+, HER2-
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May 11, 2011 07:05PM karen1956 wrote:

KAt...I did TAC chemo....6 rounds...finished July 2006, then did rads....took AI's for 3 1/2 years....I've been off them for 14 months....its 5 years since Dx.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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May 11, 2011 10:30PM kssunflower wrote:

At dx my tumor was 5 cm with +nodes ER+PR+ (almost 100%)HER2- Grade 1 classic lobular. After neoadjuvant chemo - 3 weekly taxol, followed by 4 dose dense AC, followed by 4 dose dense Taxol & bilat mastectomies with axillary lymph node removal- post op pathology revealed 2 tumors <<1 cm and -nodes, ER+PR-HER2-. So chemo did work for me even though it was low grade lobular highly ER+PR+

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May 12, 2011 12:10AM Katarina wrote:

Thank you all for sharing. I'm now curious why my Onc is going to put me on T- Taxotere and C= Cytoxan alone. I'll ask him about the Adriamyacin - is out of scope, see what he says and report back.

My tumor was 12.5 cm - classic ILC with some in situ but grade II. With 3 nodes grossly cancerous. My ONC told me the real driver for me for chemo: Taxotere and Cytoxan -- was the blood stream invasion.

 I see him this Friday and will ask why Taxol and/or Adriamycin were ruled out. I'm ER+90%, PR+70% and HER2 neg.  I think he's going after the cancer in the blood stream. He hasn't dropped the mets bomb on me and I don't think he will from my scans but I want the regime to be cure and not just a control factor.

You all have added a tremendous amount of help in my questions to my Onc.  

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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May 12, 2011 12:30AM Robyn_S wrote:

Sherrie- thank you for giving a fresh burst of hope for Positive outcome! I am also a grade 1 ILC and had a large 8.9cm tumor and another 1.6cm tumor and small 0.6 cm macromet in 1/5 nodes . I had a BMX (pathology found multifocal LCIS in the PMx breast ) and have started 3x FEC (5Fluoricil, epirubicin, cyclophosphamide) then 3x taxotere. The oncotype score was a low 9, but tumor size, premenopausal and age dictated that being aggressive with treatment was called for esp as I did not want further axillary clearance (JAMA study 2011 axillary vS sentinel node ) adjuvant online indicates a benefit of 7% with chemo over hormone therapy alone. I take that with both hands! I M also going to enter the densomub (antibody against bone mets) trial here (RCT double blind placebo controlled) which will at least give me the security of whole body CT and bone scans for the next five years.
Good luck all! Robyn

Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!) Dx 3/8/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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May 12, 2011 05:27PM Fitzy wrote:

Can Some Patients Avoid Adjuvant Chemotherapy for Early-stage Breast Cancer? www.medscape.com/viewarticle/7... Join up and login for updates on BC. This paper concludes........The common theme from these studies is that tumors with features of high tumor proliferation, such as no expression of ER, HER2 overexpression, high grade, and high risk as assessed by a multigene assay, are at increased risk of early recurrence and are most likely to benefit from adjuvant chemotherapy (Figure 2). This observation was first reported more than three decades ago by Lippman and colleagues,[78] but there remain important questions regarding which patients with ER-positive and HER2-negative tumors can be safely spared adjuvant chemotherapy. Prognostic multigene signatures consistently demonstrate that about half of patients with ER-positive and HER2-negative disease are at low risk for distant recurrence and are likely to obtain minimal benefit from adjuvant chemotherapy. Clinical features associated with low-risk biology—such as high ER and PR expression, low histological grade, low Ki67 immunostaining and lobular histology—can be used to identify patients for whom adjuvant chemotherapy may be avoided (Figure 2). It is important to recognize the limitations of this approach because it is largely supported by retrospective subset analyses of large randomized studies.

6 months of 'Pre Mastectomy' Chemo, 3 rounds A/C 4 rounds Taxotere, did nothing for my large Lobular Er+++/Pr+++ tumour. Mine was consistent with the majority of similar cases but there are always exceptions of course, like Sherri! 

Dx 7/30/2004, ILC, 6cm+, Stage IIIA, Grade 2, 5/6 nodes, ER+/PR+, HER2- Chemotherapy 8/5/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/30/2004 Femara (letrozole) Surgery 1/7/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/4/2005 Breast, Lymph nodes Surgery 2/6/2008 Prophylactic mastectomy: Right Dx 11/22/2013, ILC, 3cm, Stage IV, mets, ER+/PR+, HER2- Chemotherapy 11/28/2013 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 7/8/2014 Faslodex (fulvestrant)
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May 12, 2011 09:52PM IVBCSIS wrote:


I don't know all the specifics of dx for my sis, but this is what I know. dx ILC in Oct 2006 stage IV, mets at least to bone and colon. ER+/PR+ HER2-. No surgery. No radiation. She had a mass in her colon. Entered clinical trial for combo Abraxane and  Xeloda. Also took Femara as a hormone blocker. Scans showed clear including the colon after 7 or 8 mos of treatment and stayed clear until fall 2010 and it was believed that the Femara quit working, Very important side note. She had 2 grandchildren between 2007 and 2010. They tried her on 1 or 2 other hormone blockers, not sure which ones.  Still didn't work so in Dec 2010 she began the chemo combo again. Too toxic for her this time so dropped the Abraxane and took Xeloda only. Just started Abraxane only. Trying to determine which is the most effective on the cancer and least toxic to her. I hope the details are helpful and I wish you the best!

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May 15, 2011 12:17PM JFV wrote:

Pre surgery we thought I only had one lump of agressive BC.  Post surgery found classic ILC stage 3 grade 3, idc stage 1a ( a low grade) and dcis.  I also had positive nodes on the ILC DCIS side.  I also had positive margins on the ILC side.  Oh, and I had a bilateral mastectomy.  The left side was supposed to be prophylactic but that's where the IDC was found.  I had dose dense ACT chemo.  Followed by radaition.  My tumour markers were followed before surgery and throughout chemo, radiation and after.  My tumour markers were high normal at diagnosis and rose during chemo and settled back to normal now.  I am 6 months post rads and am taking tamoxifen.  Also had a PET/CT scan pre surgery and post chemo and rads.  Turns out I had suspicious lesions on my liver pre everything and they are still there.  BUT they are classified as cysts now since they have not changed.  Am I out of the woods ?  Maybe, maybe not.  But, I do believe my cancer responded to chemotherapy.  Personally, I would not forgive myself if I hadn't zapped my cancer with everything I could.  ACT is tough but doable.  I did not work during treatment.  But, I had no major side effects.  Simply felt like I had the flu the entire time.  A tough way to feel for four months but doable.

Dx 3/18/2010, ILC, 3cm, Stage IIIA, Grade 3, 5/17 nodes, ER+/PR+, HER2- Surgery 4/20/2010 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/15/2010 AC + T (Taxol) Hormonal Therapy 10/1/2010 Aromasin (exemestane) Radiation Therapy 10/1/2010 Breast, Lymph nodes Dx 4/2017, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 15, 2011 12:21PM JFV wrote:

Oh and I had a stunningly high Ki 67 score.  If you goole Dr Mark Citron and the words dose dense ACT you will find info on a study he did regarding this chemo and breast cancer.

Dx 3/18/2010, ILC, 3cm, Stage IIIA, Grade 3, 5/17 nodes, ER+/PR+, HER2- Surgery 4/20/2010 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/15/2010 AC + T (Taxol) Hormonal Therapy 10/1/2010 Aromasin (exemestane) Radiation Therapy 10/1/2010 Breast, Lymph nodes Dx 4/2017, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 16, 2011 01:42AM Katarina wrote:

Earlier I was curious why my ILC protocol wasn't including Adriamyacin but just TC. He told me it was because my Target Now test came back showing  my tumor markers showed no value for using A and just going with TC. There isn't much lit. on the Target Now test.

I have to note that I'm seeing Taxotere /Cytoxan used for everything - IDC and ILC -- so still wonder if that's just what's hot in the arsenal these days.

My Bone scans came back clear. My CT showed what my Onc called a "benign cyst" on an ovary. Now I know ILC travels to the peritoneal / ab area first. My question to my Onc was "how do you know it's a cyst"? and "how do you know it's benign"?   What test would you insist on if you were me?

Thank you again for your share and stories. I know we are all learning from this thread.

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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May 16, 2011 04:42AM ma111 wrote:

What was your tumor marker levels? You mentioned that there wasn't much lit. Did you have a pet? If your markers are down and the cyst did not light up, than it probably is not cancer. Cyst are usually fluid filled and cancer is not.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 16, 2011 05:37AM Steff66 wrote:

Dear all, I live in Norway and here the national regulation says no further treatment after surgery if the tumor is smaller or exactly 1 cm without node involvement. Mine is 1 cm. Those with 11 mm have to go through the whole treatment. Both my oncologist and national experts say I am a difficult case and they say I need to make the decision myself whether to do chemo and hormonal treatment. Lubolar and estrogen positive does apparently not respond so effectively with chemo. I need to make the decision whether to do FEC 60x6 (18 weeks) this Friday and I find this exhausting. Any advice from you how to think about it? Waiting also for my Ki-67 test which is about proliferation in the tumor. Under 10-15 percent is supposed to be good and a further sign that chemo would not be effective. But I am scared of not doing everything to kill cancer cells in my body. Please comment! Big hugs, Steff

Dx 4/6/2011, ILC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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May 16, 2011 05:22PM Merilee wrote:

Yikes Steff that is a big decision. I am not sure what FEC is but that seems like  

a lot, 60?

breastcancerbeast.blogspot.com & downsyduderescueranch.blogspot... Dx 4/4/2011, ILC, 1cm, Stage I, 0/9 nodes, ER+/PR+, HER2-
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May 16, 2011 06:53PM Gitane wrote:

Steff66,  Can you ask that a MammaPrint assay be done on your tumor?  This was developed by Van 't Veer in Norway using her 70 gene signature.  There is lots of information about it on the internet.  Hugs, G.

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May 25, 2011 05:09AM Steff66 wrote:

Dear all, started chemo last Friday, 6 rounds of FEC 60, 18 weeks all in all. I have read too much about my particular condition, in the Lancet and other places and it just scares me. The doctors did not want to give me chemo, but I insisted, due to recommendations from the St Gallen consensus conference 2011. The doctors surely did not want to do further testing either. I hope for the best. And I hope for the best for all of you too! Hugs, Steff

Dx 4/6/2011, ILC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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May 25, 2011 08:34AM cathmg wrote:

Hi-I had TC x4 in '08. The cells were pleomorphic, so we did chemo. My onc said that Adriamycin wasn't showing to be as effective on ILC. 

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2-
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May 26, 2011 12:44PM IllinoisNancy wrote:

I had Adriamycin followed by TC X 4.  My bc was on the surface of my breast and the Adriamycin made it dissapear.  The onc was very happy with the red devil in my case.

2006 ILC in left breast
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May 26, 2011 02:01PM Katarina wrote:

ma111 I asked my Onc for my markers but he said he didn't have them at the time. I got some feedback on the blood test they do for Ovarian cancer and my score was within normal range (11) and below 35. The ultrasound test they did following scan also suggested cyst. So they're keeping to the view that it's a cyst but also going to retest in 5 weeks to see what it's doing. I don't really know what you mean when you talk about tumor markers?  Is that RBC, WBC, or Ovarian cancer blood test they do?  

I noted in a journal the other day that the only blood test that has a 95% confidence probability in detecting cancer is the PSA that men take for prostrate cancer. All the other blood tests are suspect for false positives. Isn't that reassuring - NOT. 

My Onc took Adriamycin out of my protocol although he said he was hitting my ILC with the most powerful weapons in the arsenal. My tumor was 12.5 cm (surgically removed) but found that the cancer had invaded my angiolymphatic system so that means killing it wherever it might be in my body but with no tumor to measure against. TC and 6 rounds was validated by "TargetNow" test results. He did say he was worried about side affects of Adriamycin more than benefits. I'm finding the TC protocol hard enough to handle.  

 I would feel better though if I had something there as a benchmark today so that at the end of treatment I could see whether it had changed or not. 

I haven't heard of FEC. What does it stand for?

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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May 27, 2011 03:35AM AnacortesGirl wrote:

Katarina -

I understand your concern.  When you get a tx that is not the same as the majority you really have to wonder.  But, I also remember seeing some research out of UCLA where they had done a study that questioned the effectiveness of Adriamycin on IDC and ILC versus the potential side effects.  Your onc has probably been influenced by the research done in LA and that is probably not a bad thing.  The only thing we know for certain is that they have found the magic bullet.

I had Pacitaxel with Sutent for the first 12 weeks followed by AC for 14 weeks (supposed to 15 but my blood counts said Stop!).  My chemo was weekly.  The theory was that weekly provides a more constant level of chemo to fight the cancer.  At surgery, the pathology report showed the neoadjuvant chemo had no response to my cancer.  I had quite a few PETs, MRIs, USes during the chemo because it was a trial and the most effective time was when I was on taxol and sutent.  However you'll see other women where they had a greater response from the AC.  So there is something else out there that they haven't figured out yet.  My cancer was grade 3 yet it wasn't affected by the chemo.  And it was also pleomorphic.  Was the lack of reponse due to the BRCA mutation??  I don't know.  All I do know is that I, and the breast surgeon, was taken aback at the number of positive lymph nodes.

We do what we can with what we know.  It's the best we can do.

Christy - BRCA2+; mets to bones and liver, Taxol/Sutent -> AC, BMX - no recon, Rads, Carboplatin, BSO, Veliparib trial (8/30/13-3/13/14) Dx 7/21/2009, ILC, 5cm, Stage IIIC, Grade 3, 14/17 nodes, ER+/PR+, HER2- Hormonal Therapy 9/1/2010 Aromasin (exemestane) Hormonal Therapy 2/1/2011 Dx 9/9/2012, ILC, Stage IV, Grade 3, ER+/PR-, HER2- Hormonal Therapy 9/9/2012 Femara (letrozole) Chemotherapy 3/29/2013 Xeloda (capecitabine) Hormonal Therapy 8/16/2013 Faslodex (fulvestrant) Chemotherapy 3/20/2014 Carboplatin (Paraplatin)
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May 31, 2011 12:23AM Katarina wrote:

Anacortes Girl - agreed. It must be ER and HER2 driven. Sure wish I had a measuring stick. 

I just spent 4 days in the hospital with Sepsis. Now wonder if it was a reaction to steroids and/or Neulasta. I had the body ache start with steroids before my Taxotere/Cytoxan treatment, yet body aches are supposed to be side effect of Neulasta. Having gone to the edge now as I feel like I just did I wonder if this will be a one time outlier event or could be a negative reaction to something in my treatment protocol.

I saw cancer patients in much worse condition while there so I'm humbled. 

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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Nov 24, 2013 11:53PM 4sewwhat wrote:


47 when diagnosed 15 months after I originally went to doc about lump I found :( oncotype 13. Cold capping pics on my blog LaughingThruBreastCancer.blogs... Dx 3/25/2013, ILC, 5cm, Stage IIB, Grade 1, ER+/PR+, HER2- Dx 5/20/2013, ILC, 6cm+, Stage IIIC, Grade 1, 22/32 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/30/2013 Breast, Lymph nodes
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Nov 25, 2013 08:47PM hollyboo wrote:


I had/have very similar breast cancer situation to yours. However, first diagnosis was one tumor IDC. Another hospital diagnosed three tumors ILC, one possibly pleomorphic. Post surgery path showed three ILC, one pleomorphic and against my chest wall with margin of cancer remaining in my muscle. Only had radiation. Chemo NOT recommended. Will start hormone tx soon.

I have been flipped out seeing that most with ILC have had chemo and am seeking a second opinion from an ILC, pleomorphic type specialist, if there is such an oncologist.

How have you fared over these couple years?


Dx 3/2013, ILC, 2cm, Stage IIB, 0/12 nodes, ER+/PR+, HER2- Surgery 7/27/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Nov 26, 2013 02:49AM Momine wrote:

Hollyboo, welcome! What size and grade was your cancer? Why did they not recommend chemo? Did they check your sentinel node during surgery?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Nov 26, 2013 05:36AM Racy wrote:

hollyboo, you are doing the right thing getting a second opinion. Are you in an area with a major cancer treatment centre, or able to travel to one? You will get the best advice there.

Can you have the Oncotype test?

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-

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