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Just diagnosed with ILC mets

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Hi, all

I had ILC back in 2008. Had radical mastectomy on the right breast and prophylactic on the left. Chemo AC→T, radiation and 7 years of Arimidex. 16 years later I am back in the game. Still in discovery phase. Had FDG Pet Scan that shows liver uptake, had endoscopy that shows little spot in the stomach consistent with my ILC. Any long-term survivors? Looking for hope

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  • moderators
    moderators Posts: 8,182
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    Welcome, @laguna24. We're so sorry you find yourself here, especially after so many years. But we're glad you've joined our community and hope this can be a source of support and encouragement for you.

    You'll find and connect with many long-term survivors on our boards - we know hope can be hard to find after a stage 4 diagnosis, but they are out there, and part of this community!

    Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups, including meetups specifically for our stage 4 community. Support is crucial right now, and these groups are a wonderful way to connect with others who know all too well what you're going through. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.

    We’re here for you,
    The Mods

  • laguna24
    laguna24 Member Posts: 20
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    Thank you so much for your support. Feeling so lonely with this new development.

  • claireinaz
    claireinaz Member Posts: 681
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    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

  • laguna24
    laguna24 Member Posts: 20
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    Claire,

    Thank you so much for your response. It makes two of us. I am still not ok. Angry as hell. As of today I know I have mets in liver and stomach. Will see my onc tomorrow to discuss my options. Wanted to ask you how this Verzenio is paid for? I have Medicare and supplemental, but my prescription plan has CDK meds as tier 5 which is really expensive

  • lacombattante
    lacombattante Member Posts: 144
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    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
    laguna24 Member Posts: 20
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    hello, lacombattante

    Thank you for your support. I will get to the phase of acceptance. But going back in time I am thinking what signs did I miss. Hopefully I can get few more years as I have my mom who is 99.5 year old and I cannot tell her about my condition.
    Today will review all findings with my onc and will see what approach she will offer. She is not only an MD but also in the group of researchers who investigate ILC mets

  • bighubs
    bighubs Member Posts: 32
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    @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!

  • kbl
    kbl Member Posts: 2,770
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    @bighubs Thank you, again, for always remembering me, and I’m so glad your wife is doing well. I can only imagine you think about it every day just like we do, but it’s such a relief when the plan is working and we can continue living.

    @laguna24 I’m sorry you’re back with cancer to the liver and stomach. Bighubs hit the nail on the head with my story, and I had a missed diagnosis for six years before it spread to my stomach. I’ve had the bone and bone marrow for almost 11 years and stomach 5.5 years. It’s never been found in my breasts.

    I do mostly attend the Monday Zoom meetings, and now there are two of us with it in our stomach. One of the ladies in our group just found out it has spread there. I will be on this coming Monday, so I would be happy to discuss in our meeting. I’ve found so much support from the meetings, and we are all there for each other. If you’d rather not, feel free to private message me anytime. I am de novo and occult, so I didn’t find out what everything was until 2019. As far as Medicare and Verzenio, if you don’t get financial help, the first month will be in the $3,000 range, and then you should have zero copay for the rest of the year. Next year the max should be $2,000. If you call the manufacturer, they may be able to help with that one copay.

    I am sending you hugs, and I hope you can start treatment quickly.

  • laguna24
    laguna24 Member Posts: 20
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    dear kbl,

    Praying for you and all of us. Thank you for your support. Will try to join Monday zoom to see how it can help me

  • laguna24
    laguna24 Member Posts: 20
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    Thank you, @bighubs

    Sitting right now in my doctor’s office waiting for her decision. For me long term is more than the median survival. From the literature it’s few months or in some cases two years. I have a mother who is almost 100 years. Need to take care of her.

  • bighubs
    bighubs Member Posts: 32
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    @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
    laguna24 Member Posts: 20
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    Thank you, @bighubs

    I am feeling much better after my visit with my new onc. She wants to establish a clear baseline and ordered some additional testing including CTs and FES PET scan that is specifically designed to show dissemination of the lobular lesions throughout the whole body. Also full genetic report and additional report on the biopsy tissue from my liver from Guardant360. She also told me about ongoing trials, but I am not a candidate for them as my genetic landscape is intact at the moment. Glad to hear that there are 10+ years survivors. It gives me a lot of hope. Appreciate your support and wish your wife the best.

  • tougholdcrow
    tougholdcrow Member Posts: 70
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    @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
    laguna24 Member Posts: 20
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    Thank you @tougholdcrow for your response. Quick question: why you are not on CDK4/6 being strong ER positive?

  • kbl
    kbl Member Posts: 2,770
    edited June 6
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    @laguna24 I feel bad answering for @tougholdcrow, but Kisqali is a CDK4/6 inhibitor. They have Ibrance, Verzenio, and Kisqali.

  • laguna24
    laguna24 Member Posts: 20
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    Thank you, @kbl

    I guess these are generic names which I yet to learn. I know them by ribociclib, abemaciclib and palbociclib. My doc wants me to start on ribociclib plus AI. She reserves abemaciclib for the future. So I will be on the same drug.

    Hugs and best wishes

  • kbl
    kbl Member Posts: 2,770
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    @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.

  • tougholdcrow
    tougholdcrow Member Posts: 70
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    @laguna24 All of the medical names are maddening, but yes, as @kbl points out Kisqali is a CDK4/6 inhibitor, ribociclib.

  • laguna24
    laguna24 Member Posts: 20
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    ok. After multiple tests I have mets to my bones, liver, stomach and possibly peritoneum. More than I thought at the beginning of this journey. Interestingly enough my bone scan as well as my FDG PET states no bone mets, but my Chest/ Abdomen/Pelvis CT shows mets all over my skeleton. I know with LBC it’s a problem. Starting Letrozole today with Ribociclib in a week or so (upon processing through my insurance and specialty pharmacy).
    I wish you all long life and Thank you for your support

  • kbl
    kbl Member Posts: 2,770
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    @laguna24 I’m sorry for what you’re dealing with. I am familiar with bone and stomach, as that’s my diagnosis, but I’m not well versed on the liver. I hope you keep writing to let us know how you’re doing once you’ve been on the meds a few months. 💕

  • laguna24
    laguna24 Member Posts: 20
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    @kbl I will. Wanted to ask you on the side effects of CDK4/6 as well as how do you handle the disease for so many years? Do you have any pain? You are my inspiration and I am looking forward to keep in touch

    Thank you. I wish I can hug you and all those who have to deal with it

  • moderators
    moderators Posts: 8,182
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    We're so sorry to hear this, @laguna24, we're thinking of you!

  • laguna24
    laguna24 Member Posts: 20
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  • kbl
    kbl Member Posts: 2,770
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    @laguna24 It’s been quite a while since I’ve been on Ibrance and Letrozole, but I did stop working because of the combination of the cancer and being fatigued. I had a very mind-intensive job, and during Covid, it was getting busier, and it became very hard. I napped a lot, and the Letrozole caused lots of joint pain. The pain I feel now is in my spine and especially my hips, but I don’t take more than some Motrin or Tylenol for them at this point. Every now and then I take a muscle relaxer.

    I think about my disease daily, not going to lie, but the medicine I’m on now has been working as far as I know, and I have settled my thoughts more right now because of it. I’m trying to stay positive that it will continue to work because I think an infusion is next for me, and I’m trying hard to get at least a year out of this. I also think, yes, I’ve had my cancer for almost 11 years, but I was oblivious for the first six because I didn’t know. Now I feel that if I’m not losing weight and my blood numbers are good, I’ve been able to settle down a bit. I’m so grateful to be here with the spread to my stomach for five and a half years. I don’t know why, but I try to be very appreciative every day. The days I feel bad, I rest. I know those who work can’t do that. I think fatigue is the hardest part. It’s so different than being tired.

    I really appreciate that website you shared. Having all of those amazing doctors’ information in one spot is awesome. I’m going to look at it today. I’ve learned so much, but it does seem I learn something new every day.

    💕

    Kris

  • laguna24
    laguna24 Member Posts: 20
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    Kris, thank you for sharing. It gives me a lot of motivation to fight for my survival. Looking at the damage done to my body I understand it was there way before May 2024. And I didn’t know. All this time I was doing Prolia twice a year to control osteoporosis under onc observation. But apparently doctors finding cancer by accident. There is no established protocol to follow up on cancer patients. We have certain markers in our blood, like CEA. It can tell you something is wrong rather sooner than later. But doctors go by symptoms and insurance. With cancer when you have symptoms it’s too late.
    My problem - I cannot sleep more than 5 hours. Have to take pills. Now pills are piling up. I take Gas-X to help my damaged liver digest food. Started Letrozole last night. Taking Levothyroxine in the morning etc. Back in May after my diagnosis I had a feeling that I am looking at this world through the glass wall. I see everybody smiling and happy, only I am not in the picture. But now I am slowly coming back through that wall to take advantage of what I have left. Life is so beautiful
    Please keep in touch. Hugs and kisses

    Lana

  • kbl
    kbl Member Posts: 2,770
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    Lana, I totally understand what you’re saying and the frustration of knowing it had to be there and you didn’t know. I hope you start to feel better once the meds are both onboard and that it helps all of your cancer areas for a good long while.

    When I had my tumor markers tested in 2016 and they all came up in the 90s, not the CEA at that time, I asked the doctor why that didn’t give him pause. He said because they were all high, so he dismissed them. 🤦🏻‍♀️

    I am sending you hugs and kisses as well, and feel free to private message me or write here.

    Kris

  • laguna24
    laguna24 Member Posts: 20
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    Kris,

    I have no idea how to private message on this app. All is new to me. Today got a call from pharmacy and doc’s office. They scheduled FES PT scan and notified me of over $3300 cost of my ribociclib. I am interested to see how this estradiol test works. Learning to expect worst and be happy if the results are slightly better than expected. Some sort of self protection. I’ve been up and down with these discoveries. Learning how to deal with it every day. I have friends and family, but now some thin shadow is between them and me. Only I can see it as a simple notion of planning for the future is no longer an option. But maybe it will come back. The future will be measured differently, but it will my future. In a meantime I was told that there will be a teaching session on taking Ribocilib. How was your experience with it?

    Hugs and kisses

  • moderators
    moderators Posts: 8,182
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    Hi @laguna24,

    If you click/tap on @kbl's username on one of her comments, a small menu will pop up. You will see a button that says "Message." If you click/tap on that, you should be able to send her a private message! :)

    When looking for your private messages going forward, you'll notice at the top of the website in the right corner, there is an envelope icon. If you click/tap on that, you will be able to see messages that folks have sent you (if any yet). You can click/tap on a message to open it up and proceed to respond to someone.

    Hope that helps! Let us know if you need any further clarification.

  • kbl
    kbl Member Posts: 2,770
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    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

  • laguna24
    laguna24 Member Posts: 20
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    I have medicare and supplemental. They are working on the final pricing, but it will be costly. Oh, well…