Hi everyone. I was recently diagnosed with de novu stage 4 metastatic lobular carcinoma, spread to my intestine. I'm on 125 of ibrance plus letrozole (first round; I begin my off week tomorrow). I have two questions:
*thankfully I have little to no pain. I read that if you don't have pain, it isn't working. I am so hoping this is wrong. What do you think?
*im still a nervous wreck and am finding my life so hard some days. My family has been GREAT but they so want me to be fine, that they don't allow any negativity, although they do let me cry and give me lots of love all the time which I'm so incredibly thankful for. I was diagnosed in February 2018 and it was a complete shock. I'm already on an anti depressant and Ativan. I've also lost about 30 pounds. Please tell me this subsides with time. I love reading about long term survivors because they give me hope, along with my faith. Not sure where I'd be without Jesus. Just looking for some encouragement I guess.
Thanks everyone.
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Staceyness
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You are very lucky to not have much pain, enjoy it. My pain get less the longer I was on letrzole and Ibrance. I was also in shock when diagnosed in July 2016 could not get out of my chair thinking I was going to die any day. Lost a lot of weight, could not eat. My family did try to keep my mood up. They really did not want to talk about it. Now 21months later I gained my weight back, family still does not want to talk about it. So I joined this group where I can talk about it. I think I have lots of years left. Take one day at a time, take trips, follow doctors orders. I have stage 4 mbc to spine ribs arms pelvis. Some pain in back, I am lucky. As time goes and you get used to the diagnosis. You will read here how everyone copes. You can ask anything I am sure someone has been there😞 I now consider it an illness that can be treated. No cure but I am here. You will mentally feel better with time.
Ditto what Jersey girl said. I was diagnosed 5yrs ago in July my first year was the worst it’s quite an adjustment learning to live with the fact that you have an incurable disease and you have to learn to live with feeling like crap everyday of your life. But you know what you do adjust to it sooner or later and it becomes a new way of life with good days and not so good days. Being on this site or others like it you will be encouraged as I’am when you see people living with mbc 15 20 years. Keep your chin up, smile as much as you can and cry when you have to. Your not alone with all these mixed feelings we all have each other.
Hi Staceyness - Gosh, I'm so sorry for what you're going through! I can only imagine what the de novo MBC diagnosis feels like. I had sort of a soft landing, having been diagnosed metastatic nearly five years after a IIb/IIIa diagnosis, followed by treatment. So, again, I am so sorry...
To address your questions...first, re: pain, I've never heard that. I've been stable-to-improved on Ibrance for over 3 years, feeling pain only due to tumors in vertebra (sp?), which comes and goes and is due to compression, I think. I feel that this drug has given me years of life, and it just keeps giving! I spoke w/ the wonderful nurse of my doc at Sloan-Kettering this week and he described my situation as "a marathon, not a sprint", i.e. there are numerous different treatments available and I'm on only the first -- Ibrance + Letrezole. And, from what I understand, yes, they give you the "best" treatment first, but "best" varies by person, so it's what's best overall/on average. Meaning, if your time in Ibrance is brief, that doesn't mean that the next one won't last, or the next one... I have a dear friend whose (young) aunt was out of options, then saw a new doc and went on something simple...I forget what (sorry!)...one of the drugs that deals with the hormone side of things...Anyway, she's been on that for four years now, doing well. So 8 years metastatic, so far. And she was about to go on hospice care just prior...crazy!
My one piece of advice -- since you're new to this -- and I assume that your cancer is hormone receptive since you're on Ibrance...If you haven't already, think about yanking out the ovaries (not to be crass!). This was a turning point for me, if you want more info, see if you can find my other post re: ....I forget the topic! Ibrance does turn your brain into oatmeal! ...Anyway, if you want more info, let me know!
Clair19, re: the emotional side of this...I do think it gets better. We all need time to get our footing...to feel confident that between the modern science and whatever we each do to supplement that, we will be okay for another month, hopefully another year, maybe even longer. At the same time, we adjust to a likely shorter timeframe/window and, for me and my sister (similarly afflicted), the "positive" of this has been substantial. For what it's worth, I think am happier now than at any time in my life, save for the years when my children were being born and my career was charging ahead. Wait...maybe even happier than that! I really do think it will be okay, and I don't say that lightly...
Very best to you, truly...my thoughts are with you this evening...Lynn
There are so many true and wise insights here. My first two years I was a mess. Thought about suicide right after diagnosis. Felt as if every day was one of my last. Scared, depressed. Slowly realized I did not want to live like this anymore. Therapy and drugs helped. Even if my life expectancy wasn’t what I assumed, I wanted to live a full life as long as I could. The energy it takes to be a mess just exhausted me and dissipated. I became more grateful for the basic things in life, the people in my life, even something as trite as my nepresso machine!!! I act more consciously and have tried to be a nicer better person. It’s all a work in progress. It’s so hard, like a baptism by fire, but I find the more time passes this becomes my new normal and I am not paralyzed by fear and am happier. That doesn’t mean I don’t get sad and cry sometimes, but as long as I am coasting along I am doing well and and fully engaged in life. This disease has shaken me up — wakened me up to what’s really important and what not to stress over. It has stretched me and challenged me in ways I could not have imagined. It is so hard but also so rewarding to really come to terms with the big picture. When you don’t have your mortality thrown in your face almost constantly, you tend to act like you have forever. Now I know for sure I don’t and I make far fewer assumptions about the way things are supposed to be.
Beautifully said. I, too, went through the same feelings of despair and suicidal feelings; the same stages you so eloquently described. I immediately sought help and with a very compassionate psychiatrist and talk therapist have come out on the other side. I am determined to live my life on my terms within the parameters this chronic disease allows me. Thank you for putting our life experience of MBC diagnosis and recovery on this site. You and others here are why I come back to read and share over and over again. This arduous journey is less pressing with the heartfelt sharing and caring of others here. God Bless you and all of us. ❤️
I also have denovo mbc, lobular, and have been living with it for 14 years! I've never had pain from the cancer. Side effects from the meds are very individual. Lobular can be sneaky and hard to find--that's why so many of us aren't diagnosed until it has metastasized. Lobular bc doesn't form the lumps we generally hear about with bc, but is more like strands or webs. And it does go to places that other bc doesn't usually metastasize to, like the intestines. I have it in bones only. Some of us do really well for long periods of time. Getting this diagnosis is quite a shock. I've gone to a number of bc conferences and met alot of women with mbc and alot of us are on meds for depression, anxiety and/or sleep. I needed sleeping pills for about 18 months early on. But getting good reports from scans can help and so does time getting used to this. If you haven't seen a bc specialist onc, that might be worthwhile for you. The top cancer centers in the US are those called "Comprehensive Cancer Centers" and those are listed by state on the website of the National Cancer Institute. They have bc specialist oncs who see patients and do research and are generally very knowledgeable about mbc. Even thought this rotten cancer is considered terminal, that doesn't mean we are going to die soon! I've heard of a number of women who have lived for 20 years with mbc and there was a 30 year survivor at a conference of the Metastatic BC Network a few years ago! I am 72 now and from a family of long lived people. But I would not want my grandmother's last ten years! She died just before her 102nd birthday and she was very frail and very forgetful and didn't do much other than eat, sleep and sit for the last ten years or so of her life. I suspect cancer will spare me that, lol! My biggest worry is that my onc will retire! She is close to my age and working half time now, which for her means about 30 hours a week! She's passionate about her work, really cares about her patients, and isn't afraid to say "I don't know." I live in a rural area and may have to travel a long way to find another onc as knowledgeable about mbc as she is when she decides it's time to retire. I drive over an hour each way to see her as it is. But I am really glad to have an onc that I trust so much.
Hi although my mbc is to my lungs and I had breast cancer 10 years ago it was a shock when I heard the news November 2017. I think I cried the whole month . I tried to do it when everyone was asleep but sometimes something would just set me off and it still happens even today . I think it will get easier but you need to talk about it to a person . I have a great friend that is also going through a life threatening disease and although we don't have the same thing we are the only ones that know what we are facing . My husband is wonderful as he asks how I am mentally cause after the first couple of months I finally said I need to talk about this so take the step . Some people won't talk about it cause they don't know how to or they are trying to give advice . Stay away from those . There are support groups like this one and maybe local ones out there . Maybe your oncologist knows of one . Don't be afraid to ask for help. You don't have to do this alone .
Stacey, I am so sorry to hear about your diagnosis. It was a shock to me as well as I went in for a gall bladder surgery and found stage 4, in Oct of 2016. I am taking the same meds as you and have no pain either...never had pain. My pet scans have remained stable (the images they take to vision any masses). and my markers (circulating in blood, somewhat a good indicator of the "load" of cancer, although it does not work with everyone) have gone from 240 to 70 during this year + on these meds. Norm is 0-40. I have had wonderful family and healthcare support during this time. I also fast intermittently and have a meditation practice. I believe my meditation practice has helped me tremendously. I rarely think of myself as a cancer patient, or that my life will be cut short because of it. So many people have so many struggles, this is mine, but my life is so much more than this. I hope you find a way to live with this as there is a very good chance that you will be doing so for a very long time, the operative word being LIVE.....My very best to you dear sister. Michelle
This sounds like me. I was having a bowel resection surgery done because every doctor/ surgeon/ specialist here was sure I had Crohn's disease. Thanks for all of you and your encouragement. I'm off to my daughters graduation ceremony today and will try to soak in every moment. God bless all of you who took the time to respond. I must remember that only He numbers my days, no one else🙏🏻
I read an article in our newspaper that had a very interesting article about how cancer can some very powerful pain killers. I can tell you personally I had some very painful bones where the cancer spread. Then I have had no pain in other bones and in my liver or lung where it had also spread. One article one scientific theory but to me it makes sense. I hope this is studied more.
I was diagnosed at stage IV de novo in 2007. I was 37. It’s been a log road. My family had tried to keep the tears out of my eyes too. They have since realized it’s okay to cry. It helps me to balance and keep an eye on my life
I hope you have many, many, many, more years to plan and accomplish your life’s goals. There is always HOPE in this world for you.
First, welcome to a wonderful group of people who are always on hand when you need an ear. I have been living with this since 2013 and diagnosed MBC in my liver Feb 2014. I was told up front it was considered terminal BUT that with all the advances in treatment my oncologist is of the opinion I am far more likely to die of something totally unrelated - old age? car accident (this IS South Africa!) or whatever. It sort of helped but until very recently I have been overcome with depression every time a treatment failed (unfortunately we do not get Ibrance here - it is still under section 21 investigation??) Now I am at the stage that chemo is considered the next step BUT there again my oncologist decided that, as I am pain-free and pretty well asymptomatic from the liver lesion, better stay off all treatment rather than spend on stuff that is not working or subject my body to a whole regimen that will make me feel and look like hell. At last I am sort of accepting the deal and trying to live each day. It is difficult when people want to plan things for years ahead and don't really get that you may not be able to commit - so I now commit and too bad if I can't go by then! It takes so much time and I suppose we each react differently but I find this group's interaction so encouraging.
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...Anyway, if you want more info, let me know! 
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