Hope everyone is doing well. So, I don’t know if any of you remember my story... I’m the one who’s boyfriend decided to throw me out after 6 months of diagnosis of MBC because HE couldn’t handle it.
The boyfriend, it still hurts but I don’t cry anymore. I’m less depressed. He actually had the balls to call to see how I was “ out of curiosity” he said. I told him to stop contacting me.
Well, my PET scan last week showed my tumours in my liver grew and so after only 8 months, Ibrance and Letrozole is no longer an option. Next step is Faslodex.
Anything I should know on what to expect?
Sometimes I feel like they’re just changing meds because they’re not working anymore but also just to buy me time. And eventually my number will be up soon. I’ve never heard of anyone living with MBC for 20-30 years.
Wishing you all a blessed day 🙏💕
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Annadm
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Hi there. A few things... your mention of the boyfriend calling to see how you are and you telling him not to bother calling reminded me of when my heart was crushed by bf of 8 years not knowing what he wanted so we split- I had to move out and then he called me a few weeks later to see how I was doing and I told him the same as you..discard my number. This was pre dx days, but I will never forget him calling to checkin. If those checkin calls continued I would not have moved on with my life. The calls would have set me back as I may have had a glimmer of hope he was calling because he cared or maybe wanted to come back. My heart was broken as I did not see it coming. Good riddance to him. Many years later he did try several times to reach out via Facebook messenger. He is not a friend on my FB. I ignored his messages. His last message was along the lines, "I guess if you are not responding it is your way of telling me to F off." You know what I did? I didn't respond and it felt very satisfying. I read something once which said it is hard to be broken up with. It is harder for the person who has to live with their decision. You will get over the boyfriend. Focus on you....stress is not good for anyone and especially us ladies. I have my own philosophy on this nonsense. I have noticed since I was dx in Oct 2017 that each time a med regime stopped working I had been under what was big stress for me. Sister came to town and when she visits it is like a tornedo swept thru. 10 months later dad dies equaling more family drama. Ex husband died and despite him being an ex we remained very close. I was devastated by this lose. Yup. With each of these events markers went up! My philosophy is that we need a combo of our meds and a peaceful lifestyle with maybe some changes - maybe some exercise more regularly, nutritious food, finding joy doing things we like. I try to practice this- great inspiring book is radical remission by Kelly Turner by the way who talks about a healthy lifestyle and balance. Stress is not part of a healthy lifestyle and of course we all have it so we have to learn how to better manage it.... where am I going with all this? I guess I am just sharing thoughts.
Do what you can to keep stress down so the next med can work a long time. I was on faslodex after ibrance and letrozole stopped working. No side effects from it other then the sore bum from the shot! I have a skinny butt so I think this was part of my problem BUT my heating pad worked wonders when I got home! Dont be afraid of the next treatment. Your doctor will see how it works for you and how you handle it. We are all different, but in this boat together. If you search faslodex on this site you will read about people's experience with it. Keep the faith. There are people on this site who have been living with mbc for a very long time. You can be one of them. You are not alone. Faith
I know people from another forum board that were MBC for like 8 years and more and still working full-time. Everybody is different and some of us may have additional health problems. I am going into my third year.
Within the past two years, my friend (and next door neighbor who I grew up with) has lost three siblings. Two were perfectly healthy and it was sudden. One was 64 and had a massive heart attack. Her youngest brother (one of two identical twins) lost his battle with pancreatic cancer after two years. That was only a few months ago and they have not even had time to deal with that. Her and her other brother who lived in Queens realized that they needed to spend more time as a "family" after losing Paul so they spent Xmas together.
My other friend called me a few days ago to tell me that John (he was 59) had a brain anuerism and died instantly while at work. He had just called my friend (his sister) the night before to invite her family in SI to Queens for dinner on Sunday.
I was sure my other friend made a mistake since she did not know them as well. But no, perfectly healthy.
So here are two perfectly healthy people that were my age (one a bit younger) that died before me. Just because we are MBC does not mean others are going to outlive us.
Odd, I was on (are you in UK bc here in US they seem do things different). I was on Ibrance and falsodex simultaneously. I am now on Verzenio (which I love compared to Ibrance) but also still on falsodex. I never thought of it as a replacement medication. It was something I have gotten from the beginning of my diagnosis along with whatever medication I was on. They have two different functions. I now get another shot to strengthen my bones because there are holes in my spine from the cancer.
I was told from the very beginning that they start with the first line of treatment (Ibrance in the US) which for many women I know from other forum boards have been on it for at least four years without changing. I had issues with it, so I was switched to Verzenio.
My onco explained it to me that you stay on one drug until eventually the cancer spreads and then they go to the second line of treatment. She explained that no meds work forever but that now there were several medications that they have as other lines of treatment so when one stops working, they put you on another. I didn't get off the Ibrance bc it spread, but because it caused an infection to get out of control bc of my immune system.
Years ago women did die much quicker when diagnosed with MBC. But they now found all these medications and women are around for alot longer. The point being that two "healthy" people died before me so it's all a crap shoot.
I had to smile when I saw your greeting: "breasties" 😆😆😆!!
I'm sorry for the heartache you are going through, but you sound like you are coming to terms with things. I would concentrate on your health and building yourself up, as the longer you are down the more harm will be done to your physical, mental and emotional state. It's no coincidence that when we are at our lowest ebb we lose our appetite, our sleep is disturbed, and our immune system is also affected, so it's important that you try to be kind to yourself as you heal emotionally. That will in turn help you cope better with your health.
I try to find something to laugh about every day. There is always something to laugh about, whether it's a cute animal programme (I'm a huge animal lover and adore all animals), or something my husband has said. That's not to say I am always upbeat. I get upset about things too. Just yesterday I was upset, but I am over it now.
Please don't give up and think your life is almost over. If you know what your next line of treatment is then that proves you have options. I haven't heard of anyone living with metastatic breast cancer for 20-30 years either, but I have heard of people living with other metastatic cancers long term. Kris Carr has been living with a rare, slow growing cancer since 2003. Jane McLelland was diagnosed with metastatic cancer about 20 or so years ago, but is doing well and so are others. So my point is, our lives are not over the moment we receive this diagnosis. Drugs are helping to improve the quality of our lives as well as increase our longevity. I am confident that there will be a cure someday.
Hi Anna. Great to hear from you! I was wondering how you were and I’m glad that are feeling less depressed and hopefully you have better appetite too! Your mom must be feeling happy😄. The progression is a set back but there are medications to keep us stable. I have finished 5 sessions of my WBRT although 5 more to go and it hasn’t been plain sailing. I feel more tired, no appetite and less energy and couldn’t walk as far as I used to but I was told that I should recover from the side effects a few weeks after the treatment. I was in Ibrance and Faslodex for almost 2 years and Faslodex was quite easy for me (except for the sore bum). I wish I didn’t have to change it but that’s how it is when there’s progression, Wishing you a long time in Faslodex!
Hi Annadm,
I'm sorry about the liver issue and the need for a change. That's disappointing, I'm sure.
I've been on Faslodex for almost two years, and am happy to report that it's even easier than Letrozole! Less fatigue, no joint pain, etc. So I'm hoping you have a good experience with it, too...
Also, when I made the change, I kept in my mind that someone in this group reported that either she or someone she knows was on Faslodex for nine years as a second line treatment...I found this fact comforting/encouraging...
And while 20-30 years is very, very unusual, it does happen (extremely rare though, no doubt... I can't find stats), but five and even ten years are increasingly common, which is much better than what I assumed early on...So I'd not completely rule out a good long go of this!
Finally, re: the bf...ugh...a small, pitiable human being, no doubt! But I would not be surprised if he really does care about you, just in his rather limited way...?
Take care, and best of luck with the Faslo, I happen to be a fan of this drug...
Thanks Lynn. Are you taking just the Faslo or in combo with another medication?
Ladies...I read these posts a little while back and they just stick in my mind! They're making my "brow furrow", in other words giving me wrinkles!! I think that very few relationships are meant to last forever. Some are "situational" (e.g. work friends, fellow soccer moms ,etc.), and some have deeper meaning. But I really do think "give/get, love/learn, move on peacefully" is the way to go? Just my opinion...but might lead to more happiness or at least contentedness? Said with love, sending love, Lynn
Dear Anna, I was diagnosed in 2013 when Ibrance was still in testing. I have been on Anastrozole and Faslodex since the beginning. I do have some achy joints, but no big deal. Nothing daily walks doesn't fix. The shots can be a little painful, but it's over quickly (like a minute). Tell the nurse to do them slowly and get them to body temperature, that helps. Oh, I'm on Xgeva too. That shot is nothing!
I just started Faslodex as of Wednesday, and seem to have no bad effects except soreness at the site which actually feels like muscle soreness and reminds me happily of my years as a runner! I am now on my 4th type of treatment, and have followed the pattern of switching when a treatment is failing....I know I’ll be medicated somehow for the rest of my life....but so far my quality of life has been good (It’s been 2 years) and I’m very grateful. My other drug now is Afinitor, which is more challenging, but seems to be getting slightly easier to tolerate.....They are doing so much research on MBC that I do believe that “Where there’s life there’s hope!”. But we do have challenging lives, without a doubt...this site has really helpe me!
You need to meet Mr. Right. I don't know where to find him, but I am sure that your stress will decrease when you do. Less stress is helpful to all of us. I am wishing you the best and hoping your paths cross soon. Blessings Hannah
I did say it would be morbid curiousity if he called. You just want leaving alone.
I know nothing about the new drug you are going to have so all I can say is I hope all goes well for you and that your results will be more positive in the near future.
I am on Ibrance and Letrozole, have been for 18months now. I don’t feel to bad on it but do feel tired.
Hello, I have just gone onto faslodex, I got a recommendation here of using a hot water bottle /car seat warmer afterwards.. stiff muscle at injection site for a few days.. not too bad. No diarrhea or vomiting. Relax your buttock and I found a slightly straightened leg (lying down) was less painful. Good luck!
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