I'm new to this board just signed up. I was diagnosed with breast cancer back in 2017 had chemo and radiation and all that fun stuff, my scans were clean for over 2 years until last month when they came back with a spread to my lower back. So needless to say I am devastated and terrified. Not only for myself but for my children, I have 2 sons, 17 and 11 years old. I just started taking Ibrance and Faslodex injections. Any insight or advice would be wonderful.
Thanks everyone for reading!
Julie
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Julielovescats
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Ibrance was one of my first drugs when I was diagnosed with MBC. It was great. The only side effect I had was a little fatigue. I was on it for all most two years.
I'm so very sorry about your diagnosis and how you're feeling...You're in great company here with so many others who have been there ourselves. If you look around the board, you'll see that many or maybe even most of us got through the initial (and warranted!) fear and have gone on to have long periods of time when we felt well and were able to enjoy (and I do mean "enjoy") fairly normal lives, including seeing kids grow up, hit milestones, etc. I hope this is true for you...
When I was dx metastatic, five years after initial dx, my children were not too much older than yours, 16 and 18. I'm almost six years in, feeling quite well, and am happy nearly every day.
The Ibrance + Faslo combo that you're on is great, I'm a huge fan. I've been on it for about two years after almost four years on Letrozole + Ibrance and experience minimal side effects, although this is not the case for everyone.
From what my doc tells me, I have at least three more oral/injection treatments before I potentially move to IV chemo. So, yes, I am doing well, but many others are doing even better, including my sis, who was dx same time as I was, and has been "NED" for two years now...
I know this is an incredibly challenging time for you and, again, I'm sorry about that, but you've found a great community here; I learn new things every day, some extremely useful, e.g. leading me to great questions and new knowledge/thoughts re: treatments/lifestyle changes, etc. This is also the perfect place to vent and seek/share support...
I know right now I am in denial and I know I need to deal with it at some time. Thank you so much for your support it really helped. I look forward to spending more time looking around the board for tips and knowledge.
Thanks again!
Julie
Hi Julie,
Welcome to this forum, but sorry you have to join us. I was diagnosed de novo with metastatic breast cancer in 2018, with no prior diagnosis of this disease. It does come as a huge shock for us all. I never imagined I would develop cancer, as I took care of myself and always went to the doctor about any little lump, bump, twinge, pain and I have had every vaccine going! But I hope you will feel able to join in with discussions and get to know us here.
Whereabouts in California do you live? I lived in Yuba County for over 5 years before I moved back home to the UK in 2012.
You have definitely come to the right place! The ladies here are friendly, supportive and so kind.
I'm from Suffolk, which is in East Anglia (East Anglia comprises the counties of Norfolk, Suffolk, Cambridgeshire, and Essex). I live an hour from the North Sea.
Thank you so much Sandra. You have no idea how much you just helped me. I plan to stay strong and positive not only for myself but for my kids. I need to get better about eating healthy so I plan to work on that starting now!
Thank you so much Sandra. You have no idea how much you just helped me. I plan to stay strong and positive not only for myself but for my kids. I need to get better about eating healthy so I plan to work on that starting now!
Thank you again
Julie
Phew, I am sorry Julie. I remember all too well how thunderstruck and depressed I was when I received my MBC diagnosis in 2018. My third time around as I had Stage 2 and 3 in 2004 and 2014 respectively. Hearing MBC is a whole other ball game.
I am sorry. Please know that you will feel laid low for a while. It is a lot to hear and process. For me, I remember about 2 months after I received my MBC diagnosis, I just all of a sudden realized I was not dying tomorrow or the next week or the next month. Somehow, that realization was what worked for me. I got busy living again.
I traveled pre-Covid, and like several of my other sister warriors on this board, continue to be active, especially with cycling. A few of us on this board bought e bikes and we thoroughly enjoy the way they allow us to expand our cycling horizons.
For now, you are overwhelmed. That is natural. Do what you need for self care. I occasionally take a Xanax, and found a good counselor I talk with now and then when I need to vent. I can share thoughts with her that I know are hard for my family to hear.
Since marijuana is legal in MA, I bought very low dose THC CBD oil. It comes in a tincture. I put a dropper under my tongue when I have trouble sleeping if my mind races. In MA fyi, medical marijuana allows you to avoid paying sales tax, unlike recreational purchases.
Thank you for all the kind words. I am so glad I decided to be part of this group. I have been feeling so alone and so scared to share my feelings with any of my family because I don't want them to freak out anymore than they already are.
To get the medical marijuana do I just ask my doctor for a prescription? Sleeping is a major issue with me right now so if that helps it would be wonderful. And I think your Xanax suggestion is a good one, I start seeing a therapist in a couple of weeks too. I have so much to learn and so many new acronyms to figure out! (lol)
I guess one question I have is: Now the COVID is floating around how careful do I need to be? I don't go out much since its the last thing I want but do I need to become a hermit? I miss working...
Hi Julie, welcome to this board with wonderful women who “get it”. We have all been where you are now. It’s a dark place but there is light in the future. My first thoughts at diagnosis were for my daughters who were 16, 20 & 21 at the time. It was the most difficult conversation to have but now we openly talk about it and it is just part of our lives. I was diagnosed de novo in November 2018 after severe back pain.
Today I woke up and my first thoughts were not about my diagnosis. I am happy and living my best life. You too will get there, it will take a while but the treatment you’re on gives us back our lives and for me it’s pain free for now with some side effects (low neutrophils, fatigue). I’m on Ibrance and Letrozole and zometa infusions every three months.
I should probably also say (pre-Covid) I travelled from the UK to California and also to New Zealand. And this month we relocated to Central Europe with my husband’s job! I managed the stress carefully and was realistic in how much I could do each day in preparation. So I’ve embarked on another adventure, which at diagnosis seemed impossible.
My youngest daughter has just gone to University and I am determined to see her graduate and hopefully see many more family milestones.
I am writing all this to give you hope and to show you will be around for some time to come. One of our wonderful members Lynnfish recently replied to someone studying for a degree that if she (Lynn) had realised how long she was going to be around she may have made different decisions. (Or the message was similar)! That stuck with me and made me realise we should not let cancer take more from us than necessary. I don’t think Lynn has either!
Take care, don’t beat yourself up about shifting to life in the slow lane and keep coming back to this board. It has helped me to feel I’m not alone on this journey. xx
It's so funny you mentioned school, before the diagnosis I was working on my MBA and I was just about to withdrawal from school but my husband talked me into continuing. It's hard to focus on it right now but I am trying (B's get degree's is what he keeps telling me..lol) He has been my rock through all this and I am happy I have him but he can only handle so much so I am so glad to have a place for support and understanding. Right now I just keep thinking "get through today." It's nice to know I have time and I need to embrace that and enjoy my life now...once I can get through this fear and depression and loss...
You have all been so supportive and wonderful! Thank you for reading!
I would encourage you to keep going with your MBA to distract you from you MBC. 😊 I know it seems impossible now but you will probably be grateful for the distraction once things settle down. The first six months or so are tricky while you come to terms with things. When my husband first mentioned the possibility of moving again with his job I said yes because I honestly thought I wouldn’t be around and he would need the distraction. In hindsight it has been a godsend and has made me get on with my life. It was definitely the best thing for me. Like yours, my husband is my rock and I like your husband already. Having the women on this board is another invaluable support.
Getting through each day at a time is how most of us coped at the beginning. You are not alone in that but (I have learnt from this board) depression is one of the side effects of having MBC so you may want to mention it to your medical team. They are there to help. Take care. xx
Hi Julie! I, too, am a fellow furball lover. My girl Pippa rules the neighborhood! I often wish I had her swagger!
I'm terribly sorry about your diagnosis. It's such an awful blow. But, as many of these wonderful women have said, you will find a new normal, and I sincerely hope your terror subsides soon.
Until it does, or even once you find your footing for the most part, but you have a"moment", we are here. There is great information about treatment, loving support and a window into a reality that there is life to be lived!
Be gentle with yourself and find ways to have fun and laugh as much as you can. You are on a great treatment, and there are many life moments ahead for you.
Hi Julie: Just want to add my welcome to you. Sounds to me like you already are moving forward by looking us up and joining in here. You will find great comfort and advice here as you have already discovered. There are certainly good meds out there and more on the way.
I am on Ibrance/Faslodex combo. Works very well, except for the Ibrance lowering my immune system but we are still trying to lower the dose to change that. So there are lots of ways to help.
I find just sticking to the main sites for info, like John Hopkins, or Mayo and your national group are the best places for info that you can trust. (besides here of course) If it is happening the info is there. There are a ton of nutrition groups out there.
Wishing you well,
Cheers, June S.
Hi, I’m on Ibrance, Letrozole and Denosumab bone strengthening injections. I have MBC but more in my pelvis.
So far and 18months on I am coping with the meds. I get tired and have had minimal hair loss. I still manage day to day chores but tire more easily. I think it’s mind over matter in our situation. Go with what your body tell you and if you have a problem contact your Oncologist. Don’t be scared, it will wear you down. Try and read the input on here from the lovely ladies. It helps so much to glide along more easily.
Welcome to the group no one wants to qualify for! First let me tell you that some of us with metastatic breast cancer live a long time....I was diagnosed with bc in March, 2004, and by the end of that month, scans had shown "extensive" bone mets, in several vertebrae, pelvis, shoulder blade and a rib. So I have been living with mbc for over 16 1/2 years. Ibrance was not created yet when I was first diagnosed and I got almost five years from my first treatment, Femara (Letrozole) and then over 9 years on Faslodex. I've now been on Aromasin (Exemestane) for almost three years. I've never had symptoms from the bone mets, no pain or anything else. I've also been on a bone drug, Zometa at first, and now Xgeva since it became FDA approved. One suggestion I have for you is to get a second opinion from a BC specialist oncologist, preferably at one of the Comprehensive Cancer Centers, if you are in the US. CCC is a designation given by the National Cancer Institute and means they have met extremely high standards and are the top tier of cancer centers in the US. You can find a list of those on this group's home page on the right under Topics, then Useful Resources. I've done that twice, both times suggested by my local oncologists. It's been worth the travel. First time I could feel my husband and grown daughter letting go of their fears as the onc spoke with us. Second time was just after my long time onc retired, which was as upsetting to me as this diagnosis was--I trusted her so much!
Welcome to you. I will echo what others have said. This will become your new normal. One more thing...you will see among your friends that everyone has something. This is your something. There are many things to do about your something. At the beginning it is very overwhelming. Now I look at the calendar and would say, I need to swing by Sloan on Monday to see the doctor and get shots. Then pick up the dry cleaning. It will be part of your life, not consume your life!
That is such a great way of putting it: "Swing by Sloan ...Then pick up the dry cleaning!" I love it. For me, it tends to be: see my oncologist for the CT scan results and then decide where to go for lunch! I try to plan a nice outing on results days, so that I have something to look forward to after my appointment.
Have no fear that happened to me too. That initial MBC diagnose is a blow but be good to yourself do what you need for mind and body. I got only 15months out of hormone but a lot of people get much more Really varies I think I’ve read Upto 5 years
Then there are the other drugs it’s a terrible disease but we strong woman have
Learned how to deal and this forum is very supportive.
I found both Ibrance and Faslodex easy to tolerate....I actually was in Europe with my husband (he works in Germany) for 3 months while on Ibrance, and did really well, including hiking a week on the Portuguese Coast, 5 to 8 miles a day! The biggest hardship was avoiding the wine....so I hope these drugs are kind to you too, and very effective! Good luck!
Just catching up on here and wanted to say hello and to wish you well as you start your Ibrance treatment .
I have been on Ibrance three years in a couple of months time , ( my first treatment ) and in that time my daughter has started and graduated university and is now starting work experience in London.
My main advice is to keep your mind busy, keep moving but rest when your body tells you to and to drink lots of water at all times . I have had various side effects over time , but have usually found good advice on here as to how to cope with them .
As to covid , we are in semi - lockdown here , and it’s currently worsening . I am very cautious at all times ... but I do still get out and about , often with my elderly mum , in open spaces, and I took up a new hobby a few months ago , with the purchase of an e-bike , and try to go out , weather permitting , in the countryside near home... nature is a great stress reliever ! Take care ! x
Hi Julie, sorry you have to join us but welcome to the group. Im sure you are very frightened right now but that will pass and you'll start to find your way through all this. Im 19 months in on Ibrance 125mg Letrazole and Denosumab. A few achy joints but that aside, minimal side effects. Some of the ladies on here have been dx years ago and some have no evidence of disease which gives us all hope. Dont google anything, come on here and ask questions, there's always someone who will be able to help and we all know what each other is going through which is so can offer support when its needed. Wishing you all the best and sending positive vibes your way. Take care.
I'm on Ibrance and Faslodex also for about 2 years. Very tolerable except for the fatigue. If you have problems with Ibrance, there are 3 strengths which have been proven effective.
I had to go down from 125mg to 100mg, but there is also 75mg.
Also, there is flexibility with the schedule as you see how your bloodwork goes.
I wish you well and welcome to our club that no one ever wanted to join!
It is a terrible shock when one first hears they have MBC but there is so much out there to treat us with and you will feel better with a little time when you realize the treatments are keeping things at bay. I am 2 years and 8 months since diagnosed with MBC and I feel I am leading a very normal life with a few aches here and there. In the beginning I was devastated but then after learning so much from this forum and from my friends at SHARE I realized the condition was very treatable.
Thank you so much for the kind words. I feel so blessed to have found this forum, it has really helped me to know I have time and I need to enjoy that time.
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CT exam revealed endometrium thickness and biopsy confirmed the endometrium cancer. I have MBC
letrozole & Ibrance weight gain
I need help with my attitude 
Lost my dear mom last year October 
