I found out I have mets to the liver... Please be here with me.

Hi AnaMarie,

It's hard to read your post without feeling the panic that so many of us had when recently diagnosed, and you must have had such shock at progression as very very hard to take, so lets wind it down with more information so we can help- first, please don't look at any statistics online, as they are completely irrelevant to the current state of treatments available, as you can appreciate from reading the posts of longer term survivors on the liver mets thread.

It would help if you provide more information so we can formulate some ideas or provide some information- what was your initial diagnosis (ER-positive? HER2-positive? triple-negative? etc), what treatment(s) have you been on thus far? have you had genetic testing of the tumor for additional mutations that may be driving the cancer? what is your oncologist like? are they at a major cancer center? have you had second/third opinions? what is your family/friends support situation like? There is much hope in current treatments, just because the first one failed quickly does not mean the next ones won't give you long-term stability. Others will come along shortly with help and advice galore, let's hear more about your specific situation and hard as it is just try to hang in there!!!

Hi again AnaMarie,

Below is a link to Barbara Bigelow's blog, which you might want to read for some encouragement. I was following her blog from just almost the beginning, because she had the same diagnosis that I did and we were on the same drug regimen (Ibrance-Femara) and she was just a couple of months ahead of me. If you search back to her earlier posts, you will see that, like you, she completely failed her firstline regimen, and then join a clinical trial. I think there was a botched up biopsy in that it took forever to get results, but she learned about a year after she was first diagnosed that her metastatic cancer was triple-negative, rather than ER-positive, so of course the Ibrance-Femara never worked, and the clinical trial she was in would not work either, so at that point she was a year down the road and hadn't even been on any appropriate drug as yet. Extensive mets, including one that had taken out a kidney. Things looked dire.

She got into a trial of immunotherapy and some kind of chemo (I forget what) that is suitable for triple-negative cancer. And she gets a port installed, so she can take the chemo. However, the port gets mildly infected, shortly after she has the immunotherapy, which turns the immune system into over-drive. Read her posts from Feb-June 2016 and you'll see how she ends up in the ER for months, almost dies of sepsis, really awful. Fever that cannot be controlled, adrenal glands and thyroid stop functioning, BP that cannot be controlled, etc.The cause is the immune system started attacking the normal cells, and led to organ failure. The docs realized this was happening because of the immunotherapy, and were able to reverse it by giving her steroids. As unlikely as it seems, cancer cells are actually more sensitive to high fever and starvation or other stresses than are regular cells, so on top of everything else she was going through, the cancer was really getting cooked for all of this time, and I remember thinking about that, and hoping it was the case, even as she was going through it.

But she survived (!!), and to this day about two years later, she is on nothing in the way of meds and cancer has not come back. It could be a cure, or at the least a resounding recovery- fascinating reading

https://barbigwire.com/

OK, my last post for tonight. It will take you a long time to learn about the different subtypes of cancer and all the many different types of treatments that exist and may be considered.

But here is a link to a cancer vaccine trial that has just started at Stanford that looks promising, very early stages yet and not testing for breast cancer but could be a game-changer for all of us:

https://med.stanford.edu/news/all-news/2018/01/can...

And there is a clinical trial at the NIH that tries a new immunotherapy and appears to have cured one metastatic breast cancer patient (Judy Perkins, you will find much press about her case): you would have to have liver mets and have previously been previously treated with chemo and drugs to be eligible, so just good to know its there in the future should you ever need it:

http://www.latimes.com/science/sciencenow/la-sci-s...

And here is a recent article in Time discussing the ideas of how to use immunotherapy in breast cancer:

http://time.com/5415044/breast-cancer-immunology/

Lastly, the San Antonio breast conference in early December will bring a lot of news reports about how clinical trials are panning out, so there will be a lot more press about new options at that time. You won't need this info as you will be presumably going onto standard treatments, but good news about other options for future treatments is always welcome.

AnaMaria, I am sorry you have to be here. I am married to a wonderful woman (she's not much older than you are as she is turning 40 in Nov.) who was diagnosed with MBC just this past March, so we are fairly new in the game compared to others. It takes a while to get adjusted to the news but reading this forum and getting informed about the newest therapies coming out helps keep the spirit up and high.

We have a 7 year old boy who doesn't know about her diagnosis but gets mommy is sick (hell, we are always at the hospital haha) and he is a wonderful source of joy for my wife, so I know your daughter will be more than happy to be there with you, even if just in a sense of spending time with you.

Keep on writing and reaching out here and you will find out the women (and the few male users hehe) are wonderful human beings. They don't judge and mostly, they know exactly how you feel.

To end this, I remember when I first joined and was very upset I read somebody that had been dealing with MBC for ten years saying that had they known life was actually still possible after such a devastating diagnosis, they would have never wasted the first year depressed and unable to get out there. I think that's a good mantra to be inspired by.

Daniel

AnnaMaria, holding you in the light as you go through this difficult time.

Anamaria, I totally understand this is scary. But as I read, all these lovely ladies post and their amazing stories it gives me strength. I have to say I'm not one to write, only read. It's hard for me to put myself out there. So it's amazing that you all do that, I dont know what I would do if I couldn't read all these post. Actually, I do, I would probably believe whatever I read on the net. Which most of it freaks me out, so I thank you and all the wonderful people who do.

JFL,

Thank you for telling me a little bit of you're story. Can you give me more details about how you feel? I just started palliative radiation and xgeva yesterday and the day before. The doc says if I want to do anything I can shut down my ovaries and add Ibrance. I am afraid of the repercussions of depriving my body of estrogen. And I'm afraid that once I have that first injection, I have no choice but to deal with it for months until it gets out of my system. I already suffer so much from my mental and emotional state. And I have a few physical issues I already deal with that would likely get worse that I'm not sure I could tolerate well. It's always been difficult for me to find purpose and reason enough to carry me through the mental anguish I feel very frequently. I'm still hanging on to hope that something will bust open and I can enjoy life fully and make my life worthwhile to me, but it's not here yet and it makes making decisions about my health very difficult. Difficult because I don't want to die (or suffer to a greater degree). I'm afraid of greater suffering, what comes after life, and leaving my family to suffer and my daughter to grow up without me. Ugh. Sorry for the venting.

Hi AnnaMaria,

How Are People With Liver Mets Doing is a thread here on BCO that you should check out. It has been active for a long time and you can read up on the experiences of many of us who have liver mets, some who have been dealing successfully with them for years! Best wishes!

Hi Ana Maria,

We need hope my heart goes out to you. It is very frustrating to see your youthful age and to see the outrageousness of your dx.

My feelings are similar this week I told everyone I may not be here for them.

Mom dad sister sons girlfriends aunts uncles cousins, sister in law, husband.

I must have read what you read .........

Weeping hysterically thinking I screwed myself with my decisions on treatment etc.

Then I spoke to 3 Drs and some rads they say not to start my bucket list yet. Lol

Just wondering what to expect next.

I need hope. They are ready to give chemo again. Abraxane?

No Biopsy of the liver just juice me.

I want to survive.

Markers just went up.187

Hx below I don'thave time to figure out whats going to work.

Liver 3 large 1 small

4cm largest

x 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-

Hormonal Therapy 6/5/2009 Arimidex (anastrozole)

Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)

Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+

Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left

Targeted Therapy 2/1/2014 Herceptin (trastuzumab)

Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)

Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)

Skin mets Sept 2015

3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-

Ibrance and fasoldex 2yrs

It shrunk to nothing markers normal no Ca.

But now on

10.10.18 markers up

Liver mets

I will keep you in my thoughts as with all the threads my eyes touch.

I loved Ibrance and fasolodex for the 2yrs of freedom it gave me....but greedy looking for now.