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

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

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.

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)

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- 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