Just diagnosed with ILC mets

Hi Laguna, I took was dx with ILC mets after nearly 13 years. I was infuriated, to say the least. The thing I hate about ILC is it tends to recur in soft tissue-mine did. Right now I'm on 150 mg Verzenio daily and injections of Fulvestrant every month. So far (it's been since Nov. 23) things have been okay. I hope you are doing well considering. PM me if you like. I'm always looking for long term survivors but I haven't found a lot of information that's been helpful on the ILC mets thread. I just try to hope for the best and exercise a lot so I don't have energy to spend on anxiety, which I suffer from.

Claire in AZ

hi Laguna,

I am another ILC metster, diagnosed in February (extensive liver Mets). My first diagnosis was in 2011, then recurrence in lymph nodes in 2019, treated with surgery, chemo, radiation, then Zometa for three years and aromasin. Stage IV diagnosis came as a huge shock, as if does for all of us. I had no symptoms except fatigue which I rationalized away - working too much, stressful job, getting older, not exercising enough… Then what was originally thought an issue with gallbladder resulted in discovery of mets.
Your feelings are perfectly valid! I was angry, mad, all of the above and still have bad days ever so often but slowly but steadily I am getting better at balancing my emotions.
I am currently on Verzenio and Faslodex, and my 1st PET scan is coming up in three weeks. But according to my doctor this is a very potent combo and Verzenio could be ‘quite a miracle drug’ - here is hoping!
Unfortunately I cannot answer your question about insurance coverage of Verzenio - I am in Europe and we have a different system here. In my case, my oncologist sent a request to the insurance company and they approved it without any additional questions. However I did hear that Eli Lilly offers some support programs for cancer patients. Maybe you check with them.

Sending you virtual hugs and positive thoughts.

@laguna24, I'm not sure what you consider a long term survivor, but plenty of folks similarly situated seem to be doing relatively well at about the 5 year mark. @kbl is similarly situated with mets to her stomach, bones, and bone marrow and has been on treatment since 2019. My wife is similar to @kbl but was only diagnosed de novo just over a year ago so isn't what you'd consider a long term survivor. ILC seems to be much slower growing than IDC and is almost overwhelmingly ER/PR positive which makes it respond well to systemic hormone therapy; particularly when a cdk4/6 inhibitor is included. That's probably not the reassurance you were looking for, but for what it's worth I'll add that the shock you are feeling, and all of the associated emotions that come along with it, are perfectly normal and expected. Fortunately, I think anyone who has been there before will tell you, it passes eventually. Once you get a treatment plan in place, start taking the meds, and start seeing results you'll feel much better. No one can say how long you'll remain progression free, but survival times are increasing everyday and even since my wife was diagnosed several new meds have been FDA approved for MBC (Oserdu, Truqap, TxD, and capivasertib). Many more are on the horizon. As many others have put it, while it may not be "curable" it is becoming increasingly very treatable as a chronic lifelong condition. Plenty of reasons to be hopeful!

@laguna24 I don't know what literature you're referring to, but current treatment plan for ER/PR positive, HER2 negative MBC is for endocrine therapy to halt estrogen production and a cdk4/6 inhibitor. That combination has shown to result in a median survival of 58.7 months. That doesn't account for the different types (ILC vs IDC) but combines all types. From what I've observed though, most of the folks who account for the longer term survivors on this site (~10 years or so) are overwhelmingly ILC patients.

Averages are just that of course and have no prognostic value for where an individual may fall on the line. By definition half will live longer than the average and the other half shorter, but on the whole these aren't awful statistics. And keep in mind that when this study was released, no drugs had been approved to treat HER2-low breast cancer. So second and third line therapies did not include drugs like Enhurtu which is characterized as the "heat seeking missile" of chemotherapy. I don't know how that impacts overall survival but imagine it probably adds close to a year to the duration.

In other words, statistically speaking, unless your mother is intent on setting a survival record, I think odds are very much in your favor that you'll be able to care for her for the remainder of her days.

@laguna24 @bighubs A very rough, informal count: There are at least 25 regular posters on this site alone who are over 10 years, and over twice that many if you include 7 years and over. That's just the people who regularly post. Of the people now lost, many people lived over 7 years, and that was mostly before the new treatments came along. Some types (ie. oligometastatic to bone) are more represented than others, but from what I can see, there is every kind of bc, including metastatic sites, represented in these survivors. There is a lot of tragedy, stories that will make you cry, but there is hope too. In fact, I was thinking that since the averages seem much better on this site than the national statistics, it's a very good thing to seek social support when you're going through this.

@laguna24 I feel bad answering for @tougholdcrow, but Kisqali is a CDK4/6 inhibitor. They have Ibrance, Verzenio, and Kisqali.

@laguna24 I was on palbociclib or Ibrance, but I just took one CDK4/6 before moving on. I know doctors are starting to move to try two before moving on.

Lana, do you have insurance through your work? If so, it’s called commercial insurance, and your Ibrance should be 0 through their copay program. Can you tell me if that’s what you have?

I had an FES PET scan in a clinical trial before it was FDA approved. It did show my known cancer in my bones, bone marrow, and stomach, and even saw two micro mets under my right arm that nothing else picked up. The one thing that’s bad about it is it will most likely not tell you if you have mets to your peritoneum because the peritoneum picks up too much of the tracer, so it’s not a good indicator. Thats what I was told in the trial.

As far as I remember, I didn’t have any learning on Ibrance. I just got the pamphlet and took it in the evening with my Letrozole. I’m glad they’re going to have some learning for you, hopefully with side effects and what to expect.

I will private message you now so you can see how it works.

@moderators Thank you for the great explanation of how private messaging works.

Kris