I need to see an ILC expert

So sorry for your situation. Just want to mention to do your research and make sure you choose a university based teaching hospital to be treated. You might even be able to do some research and find somewhere that specializes in ILC, such as Mayo Clinic or the like. IMO where we are treated is a huge piece of this puzzle. Good luck and please keep us posted...

Illinois Nancy, what about MD Anderson Cancer Centers? They have several locations, one in NJ (might be the closest to you), Fl, and one here in Az, too. Can you get a referral from your MO for someone who specifically treats ILC in skin? I'd demand one and go right away wherever they are located. I would think that metro Chi-town area would have some specialist available?

We are here for you and care. Keep us posted.

Claire

Nancy - I'm so sorry to read this news. I agree with Lekker that University of Pittsburgh may be a good place to start. One of the co-chairman on the ILC conference was from Dana Farber so that may be another place to try.

The link below is to an interesting article about ILC that talks about mutations in local recurrences. I think that there are targeted therapies for PIK3CA mutations that are approved for metastatic BC. I don't know about regional recurrences.

https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-015-0519-x

I will be thinking about you as you navigate your way through this newest diagnosis. You've been through so much in the past few years and you have persevered. Sending positive vibes your way.

Very sorry to read this Nancy. The others on this post have some great suggestions. I sincerely hope that you are able to find an excellent treatment centre for ILC. Mine is similar ER 90% PR 5%.

Best wishes to you.

I could not sleep last night after reading this post. I thought about my neighbor...he has kidney cancer that spread. He is older so not able to do a lot of treatments. They are using Keytruda (pembrolizumab) on him and it has halted his cancer. This is originally used for skin cancers, but Jimmy Carter had this for his melanoma that spread to his brain and stopped the cancer.

I'm also going to copy/paste your post and send it to my oncologist asking if she knows anything; her new hire is the one using the Keytruda on our neighbor.

Hang on...we will try all we can!

Re: Wallycat's suggestion of Keytruda, there are some clinical trials going on with Keytruda for breast cancer. One is testing Keytruda with Ibrance and letrozole for hormone-receptor-positive bc. I think this one is at City of Hope and Mayo Clinic, and probably some other locations as well. There is one for TNBC with Keytruda and Halaven. For details you can search for Keytruda here on the discussion board and also on a clinical trial search.

Thanks for checking back in Nancy. Please update us if you can after your appointment. We're all hoping that Iowa has the right treatment for you!

Great news, Nancy! Keep us posted!

((((((((((Nancy)))))))))))))))))))

Cancer centers of America in Illinois---have you been there? I would get a second opinion. You may not qualify for any trials, but maybe there's an onco that can do an "off label" treatment that may do something.

I've been thinking about you and grateful you post your updates and situation. I am so deeply sorry you are foisted this hell-of-cancers to contend with.

I'm truly sorry you're dealing with this. If you don't mind, I'd like to ask a few questions and provide a different perspective. I don't know your entire situation, so sorry if any of this has been covered.

1. Other than the skin mets, what other mets do you?
Besides ILC, what is your other cancer?

2. I wouldn't give up. I'd get second and third opinions.

3. Have you had any advanced genetic testing to identify your mutations? Some options are:

- FoundationOne by Foundation Medicine
www.foundationone.com

- Guardant360 by Guardant Health
www.guardanthealth.com/guardant360

- GPS Cancer by NantHealth (my recommendation)
http://nanthealth.com/gps-cancer

4. If you've exhausted conventional options, please consider Immuno-Oncology drugs. Yes, Immunotherapies are still very experimental for breast cancer and they are not FDA approved yet. It's a slim chance that they will work. BUT, if they do work, these experimental agents offer "the chance" of generating a durable long term response. Maybe only a low chance, but a real CHANCE. Immunotherapies have revealed impressive responses in a variety of tumor types for which conventional therapies historically have had limited success (melanoma, leukemia, lymphoma, lung, liver, bladder, head & neck cancers, etc). Tumors are heterogeneous and always evolving, so conventional drugs that are designed to kill cancer cells directly by targeting cell-intrinsic pathways inherently select for resistant clones that can lead to relapse. With Immunotherapy, immune cells are like a "living drug", and can generate a coordinated and robust anti-tumor response with capacity for memory, potency and specificity that is not achievable using any other therapeutic modality. Read that last sentence again. It's important to understand this notion.

Immunotherapies can be accessed by enrolling in a Clinical Trial. There are over 250 different immunotherapy trials that are enrolling breast cancer patients throughout North America. Most are Phase 1 trials since breast cancer has historically been considered immunologically silent.
However, enough time has passed where some of these Phase 1 immunotherapy clinical trials have revealed durable responses from a minority of Stage 4 TNBC patients whose metastatic tumors have melted away with Checkpoint Inhibitors (Keytruda, Opdivo, Yervoy), a form of Immunotherapy.

For example, here's a recent success story of a metastatic Triple Negative Breast Cancer (TNBC) patient with Skin metastasis who exhausted all conventional therapies and responded to a Immunotherapy combination.
http://www.cityofhope.org/miracle-patient-finds-new-hope-with-breast-cancer-vaccine?
The therapy involved a combination of a Checkpoint Inhibitor called pembrolizumab (Keytruda) with an experimental Anti-P53 vaccine (p53MVA). The patient had extensive skin metastasis, which she endured for over 5 years and covered half of her body. After 6 weeks of this treatment, her skin mets disappeared. Imaging of her bone mets reveal improvement as well. She did this immunotherapy trial: https://clinicaltrials.gov/ct2/show/NCT02432963
This type of response is noteworthy. Granted, compared to other breast cancer subtypes, TNBC patients tend to harbor a higher tumor mutational burden, so after immunotherapy drugs like Keytruda release the checkpoint "brakes", the immune system can see the cancer and attack. Results from other checkpoint blockade Phase 1 breast cancer trials reveal durable response rates of 10-20%.
I'm providing this info because it's an example of what is possible with immunotherapy.

If you're interested in this approach, please let me know and I can provide more resources.
All the best.

Nancy - The Paloma-2 Trial showed a significant increase in progression free survival in women with ER+/Her2- BC who were treated with Femera and Ibrance even when they had been previously treated with a different AI. Have you visited the Ibrance Thread? Has your local MO discussed this treatment with you? It might allow you to continue your monthly Sandostatin injections. Sending you positive vibes...

https://community.breastcancer.org/forum/8/topics/828848?page=199#idx_5959

Nancy, I'm just following up on lekker's comments with a link to the Carcinoid Cancer Foundation.

http://www.carcinoid.org/

You've probably been there, but through them could you find a community that advocates for best practice, and perhaps doctors who are more versed in ILC and carcinoid patients?

I sometimes think we should be allowed to institute a public list of shame for doctors who speak to patients as the specialist at Iowa U Hospital spoke to you. It was unconscionable.

I live in Italy and had a similar encounter with THE ILC specialist, the name from Italy you see on all publications, the most famous of all the ILC MOs in Europe as far as I know, and it was €300 very badly spent. Frustrating and sad to know we can't "warn" others.

So glad you're actively looking for another solution; I'm confident you'll find it! Gentle hugs