Anyone with Pleomorphic ILBC??

[Kats3]

Hello. I was diagnosed in 2012 with the Pleomorphic subtype of Invasive Lobular Breast Cancer. The Pleomorphic part means that my cancer is more aggressive with the cells dividing and spreading more quickly.

After watching Share's Webinar on Invasive Lobular BC, it was stated that those who have the Pleomorphic type should receive chemotherapy. I didn't. I had a lumpectomy followed by 33 rounds of radiation, then put on Arimidex. No bloodwork, no scans done in that time period even though I had one sentinel node that was positive.

About 1 1/2 yrs later, June, 2014, bone mets appeared. The anti- hormone drugs Arimidex, Tamoxifen, Faslodex didn't help much even though I'm 95% ER+, Her2-. My new Oncologist put me on oral chemo pill Xeloda which brought my tumor markers down immediately. Now they're slowly rising. I believe I'm headed for Ibrance + Letrozole next even though I don't respond well to the anti-hormone drugs.

Was wondering if anyone out there has a Pleomorphic finding in their Pathology report and have Lobular BC. If so, what's type of treatment plan are you on? Thanks so much for any input you can give me.

Kats3

[Hidden]

I'm sorry to hear about your delayed treatment, but good to know that you learned of SHARE's webinar on ILBC. I don't have that type of breast cancer but heard the webinar about the first symposium on ILBC.

For anyone else interested in the ILBC video, it can be found online at:

vimeo.com/201871673

Or on SHAFE's website at:

sharecancersupport.org/vdob...

I hope that someone in this group will respond to your post, as several ladies here have ILBC.

Best ,

Joan

[Anneespo]

My cancer is very aggressive Also I respond to the chemo fast but as soon as I am finished it comes back right now I am on xeloda and tykerb right now levels dropped a lot from 115 to 15 hopefully this is the one that will work for a long time

[Kats3 in reply to Anneespo]

Hi Anneespo,

Is your BC Lobular? What kind of drug is Tykerb? Is that a chemo drug or a hormone drug? Thanks for responding to my post. Kats3

[missa13 in reply to Kats3]

Hi Kats3 -- Tykerb is given to women with Her2+ cancer. It's given with Xeloda (chemo) which can be used in treatment of women with ILC: breastcancer.org/symptoms/t...

[Hidden in reply to Kats3]

Women with ILBC can be HER2+. Tykerb is a targeted drug for HER2+ breast cancer.

[Mariannem]

You may be hormone resistant. I would strongly suspect this as your cancer came back while you were on anti-hormone therapy i.e. an aromatase inhibitor. Do you have a cancer lesion that can be biopsied easily? If so I would ask for a biopsy with testing for hormone resistance. I am hormone resistant done via genomic testing of one of mine cancer lesions. My cancer currently carries the ESR1 mutation, so anti-hormone therapy is for the most part is not effective. There is conflicting data on whether tamoxifen may be useful in anti-hormone resistance.

Have you gotten a second opinion regarding your treatment? If not, I would recommend going to a major breast care center that may have experience with your type of cancer.

Marianne

[Kats2 in reply to Mariannem]

Hi Marianne,

Saw my Onc today. My markers climbed another 58 points. He says Ibrance deters hormone resistance. I asked about genomic testing and will now be going to Dana Farber satellite center and will discuss my case. Hopefully someone will know more about ILBC there. My Onc says that I'm not totally resistant to aromatase inhibitors. Who knows? All I know is that my BC is sneaky!! I'll keep you posted when I know more. I have strictly bone mets so I don't know if any biopsy can be done to get the DNA component. Groan. Take care. Kats3

[Hidden in reply to Kats2]

Guardant Health does liquid biopsies. They have a website and you can also contact them by phone. They were extremely helpful as to what the test can tell you, as well as medical insurance coverage, when I called them. Foundation One, which until lately did only tissue biopsies, has now moved into the liquid biopsy space, and I'm sure that their website has information and a telephone number.

[Kats2 in reply to Hidden]

Thank you Joan. I'm going to look into both places that you mentioned. I'm very happy that you passed on this info. I'll let you know how I make out. Wishing you well. Kats3

[Kats3]

Hello Marianne,

Thank you SO much for responding! You are so right! I believe that I'm hormone-resistant. I only have slides of the teeny tiny tumor that was removed from my breast in 2012. It was so small that the Onco DX could not be performed on it, and this was tried twice in CA. I'm from MA.

Would cells from my bone biopsy be suitable to be tested??

I went to Dana Farber in 2015 and was told that I was receiving the right treatment of Xeloda. Nothing was mentioned about the Pleomorphic factor. Was it not taken into consideration? I don't know.

I'm seeing my Oncologist this Thursday. Maybe I could have a blood test that would act as a genomic test? What do you think? My Oncologist doesn't do clinical trials. Should I pursue this?

I think he's ready to put me on Ibrance.

This is getting more and more complicated. I'd like more answers from knowledgeable medical people. How did you find out about your ESR1 mutation? And did it help with getting a suitable treatment plan? Do you have Lobular BC?

Is there a site I could Google to find out more about my genomic standing and the Pleomorphic factor? I'm really intrigued now.

Thank you again Marianne. You've shed new light on my situation. I'm willing to pursue your suggestions, but just don't know how to go about doing so. If you or anyone else have ideas of where or who I should consult with, I'd greatly appreciate the advice. Thanks again and hope to hear from you in the not-too-distant future! Kats3

[Mariannem in reply to Kats3]

Unfortunately it is very hard to obtain an accurate biopsy with bone only tissue. Using blood for genomic testing is just in it's infancy. It is called a liquid biopsy. I do not know if it is readily available outside of a clinical trial.

Getting into a clinical trial is not easy. I have been trying for the past 6 months without any luck. It is also not easy to find trials that are ongoing and accepting patients.

I found out that I had the ESR1 mutation with Foundation One testing. I luckily have a lesion in my liver that is easily biopsied. Yes, the testing helped as it lead to starting chemotherapy instead of just switching hormone therapy again. It also made it much easier to accept starting chemotherapy as it became the best treatment for me currently. I have ER+ ductal MBC.

I recommend to ask your onc about about the rational for Ibrance/Letrozole. The onc may want to continue on oral therapy to "make it easier on you". For me each treatment has not been easy for the first couple of months. I recommend to bring up your concern about hormone resistance. It is a valid concern if you have responded to hormone therapy.

Good luck with your appointment on Thursday.

Marianne