Stage IV ILC -- Lets's Share Research, News, Treatment Options

ShetlandPony

I'd like this thread to be a repository of information and ideas specifically for stage iv ILC, where it is easy to find information and ideas we can take to our oncologists. Please post and discuss any breaking news, information from expert oncologists, and studies about ILC that could help us to be informed patients, able to advocate for ourselves. (I suggest we not go into a lot of personal treatment history here unless it relates to the research.)

Only about 10% of breast cancer cases are Invasive Lobular Carcinoma. It is an understudied type of breast cancer. Most of the research does not look at ILC separately, despite evidence that ILC is biologically different from IDC. I believe that if researchers look more at ILC, our treatments will improve, and advances in genomic profiling of tumors will help.

ShetlandPony

HER2 (ERBB2) MUTATIONS IN ILC

A certain number of Her2 negative metastatic breast cancer cases have a Her2 mutation, and these are more common in ILC than in IDC. Drugs such as neratinib can offer effective treatment for Her2 mutated breast cancer. This is different from Her2 amplification as in Her2 positive; Her2 mutations are not detected by standard IHC or FISH tests. The oncologist can order a tissue or liquid biopsy (Foundation One, Caris, Guardant) to check for Her2 mutations that might be driving the cancer.

Some of the literature:

Relapsed Classic E-Cadherin (CDH1)-Mutated Invasive Lobular Breast Cancer Shows a High Frequency of HER2 (ERBB2) Gene Mutations

http://clincancerres.aacrjournals.org/content/19/1...

Nonamplification ERBB2 genomic alterations in 5605 cases of recurrent and metastatic breast cancer: An emerging opportunity for anti-HER2 targeted therapies

https://onlinelibrary.wiley.com/doi/pdf/10.1002/cn...

A clinical case of invasive lobular breast carcinoma with ERBB2 and CDH1 mutations presenting a dramatic response to anti-HER2-directed therapy

https://academic.oup.com/annonc/article/27/1/199/2...

ann1999

ShetlandPony- great thread idea! I’m wondering if anyone has update information from the ROLO phase 2 trial in the UK - even phase 1 would be interesting.

Frisky

Shetlandpony...I have nothing to contribute right now, but i will study the links to the research you’ve posted..

Thank you for starting this thread....I was ignorant till you mentioned that ILC is so different from the more common IDC and that it should be treated accordingly

solala

Hello Shetlandpony,

Thank you for this thread. It is instrumental to start isolating ILC from the other BC’s.

I was diagnosed with ILC 11 years ago and since 6 years with mets to skeleton.

Once I started to search who on these boards is dealing with ILC and added them to my favourite contacts (can’t find that anymore, but you and Romansma were the first on it) to start counting and following who is on what treatment, since how long etc.

I understand this thread is for sharing news on research and treatment options, so apologies for asking another question: But as I have so many questions regarding my own ILC experience (how it evolves, mutates, typical symptoms, treatments etc), do you know if there is a thread ILC patients use?

I was on a long break from Xeloda (doubting if this is the right treatment for ILC) but have to start again since new progressions in my spine, I am reluctant to start again staring at the box since a week.

Have a nice weekend!

DivineMrsM

Interesting topic, SP. I was diagnosed with mbc from the get go, it was ilc, in 2011 and had big treatments then started Arimidex and had a long stretch of stability until just this week when scans revealed a new bone met to the spine. During this stretch of stability, I often forgot about the ilc part. The onc is starting me on an Ibrance combo. When I have time, I will check out your links, thanks for posting them.

Nkb

It is interesting that in this country the treatments are they same. My MO trained at MD Anderson and called it garden variety breast cancer. The UCSF specialist agreed although when I mentioned the ROLO study using crizatinib in the UK she perked up a little since UCSF is consulting on that one. She did tell me that she has never seen an ILC cancer with a high mutational burdon. And she said there is nothing actionable for a FN1 mutation.

SOlala- have you tried Palbociclib or another CDK4/6 inhibitor yet

EV11

ROLO is just about ready to open enrollment (I stay in touch with one of the PIs....) I am curious to see how enrollment goes since one of the Inclusion criteria is to have RECIST-measurable disease (most lobular lesions don't meet the requirements....)

My onc and I are going to try to get crizotinib off-label; am trying to figure out when to time that. May also seriously look into immunotherapy since I had a remarkable and very unexpected fall in my CTC count this month from 4 to 0. CTC counts had been steadily rising (2,2,3,4) over the past 6-7 months on the same treatment so this was very surprising....It was drawn a week or so after I had the Shingrix a vaccine (it stimulates IL-2 and INF-gamma.) I am going to repeat the CTC test one month after the last test and if still 0 or 1, will consult with an onc who has extensive experience in immunotherapy research for breast cancer and see what he thinks...there is know to be a subset of Luminal A ILC that is more immunogenic, and suspicions (but no research yet due to the small number of samples available for investigation) that Luminal B (mostly PR- and/ or pleomorphic -a VERY small portion of ILCs--but I am both) may also be more immunogenic.

Beyond extensive bone mets I also have significant peritoneal/abdominal/ organs/colon and now surface of the bladder involvement and I am trying DESPERATELY to find an onc who will discuss intraperitoneal chemo with me in the absence of the major surgical debulking that HIPEC involves. My intra-abdominal mets are small (in the 1-5 mm range, and that is the size of tumors often left in debulking as "residual disease"...) I tried to see a well-known GYN Onc at City of Hope and she wouldn't even schedule a consult with me, since "IP chemo is for GYN and GI cancers only, not MBC." I have a local recommendation, but she is on maternity leave for a while longer. Am looking for anyone who might have a willing onc to consult with. I'll travel anywhere in the US to talk to someone who does this and would consider it for ILC/breast cancer mets.

Anyone with any suggestions or ideas about (1) getting ILC-friendly inclusion criteria for clinical trials, or (2) know of specific trials for ER+ MBC that do NOT require "Measurable disease" or use RECIST standards would be useful information to post here.

Also, anyone with oncology contacts who might be willing to consider intraperitoneal chemo for those of us with peritoneal/abdominal organs with surface lesions please post names here. They most likely will be GI or GYN oncs, since this procedure is more common for those patient populations.

Thanks for your thoughts and I love the idea of this thread.

Elizabeth (treated at Providence Cancer Center in Portland, OR)

Bestbird

I hope that strides will be made with regard to studying and treating ILC as a separate entity!

Just checked out "metastatic breast cancer" and Lobular" on clinicaltrials.gov and saw this, but it's in the Netherlands.  Definitely indicative of how much more needs to be done to study I:LC in the mbc setting.

https://clinicaltrials.gov/ct2/show/NCT03147040?term=lobular&recrs=a&cond=Metastatic+Breast+Cancer&phase=0123&rank=1 

Nkb

EV-11- my ILC is pleomorphic and now PR- also. Acting more like Luminal B. I have had two shingrix vaccines- don't know if they did anything to my cancer or not.

I am glad for this topic also. esp interested in ROLO.

Lily55

Never seen an ILC with a high mutational burden? Mine has mutated from being almost 100% ER and PR positive to almost ZERO......and showing zero receptors to anything else....HER NEG...........

My Tumor markers have NEVER been out of the normal range....ever, not even now with rampaging bone mets........I have been told Paclitaxel is the only treatment they can use for me.............or I will get worse and I am getting new fractures all the time.....but is rthis really true for ILC that is acting like Triple Neg?

Sorry if I am sounding dim

EV11

Lily55- Most ILCs, like most ER+ MBC, have low mutational burden; there are some ILC's (usually pleomorphic) that carry high TMB, but not usually as high as for ductal cancers that are TMB high, nor as high as some TN cancers. But there are other mechanisms and likely there will be other indicators of immunotherapy response besides TMB; hopefully those will be identified as the research progresses.

It is very unusual for ILC to lose ER/PR, but not unheard of. But now being TN, you can look into immunotherapy trials, which are almost always restricted in MBC to patients with triple negative disease.There are MANY TN MBC trials to consider, and I would ask you onc to help you find one that you might be a good fit for.

The protein that the cancer tumor markers CA15-3 and CA27-29 detect are located on the surface of breast cells. As the breast cancer cells mutate they sometimes lose this protein, and thus the agent used in the tumor marker tests don't have anything to detect, so markers stay normal for people in this situation. I can imagine that it is frustrating, especially if your lobular disease is difficult to detect on scans. Starting last September I have added eveyr-other-month CTC tests (paying out of pocket-ouch!) to try to get a better picture of how my cancer is responding to treatment, since it is not well-detected on scans... We need a few more months of CTC tests to see if there is any correlation with the CA27-29.

Let us know how you do-- the GELATO trial that Anne linked to in the Netherlands is using atezollizumab and carboplatin-- maybe you can convince Roche to provide you atezo under a "Compassionate use" or "Expanded access" program.

Elizabeth

Lily55

Thank you Elizabeth, I will look in to this, for now I feel paralysed by fear of the unknown and chemo in less than 48 hours.......am listening to early Elvis gospel music to try and stay calm..........