Just having a tough time lately believing in my treatment, and believing in myself! My husband has been so positive and wonderful from the day I found out I have MBC .
I feel like it's hard for me to have faith and hope that the Ibrance will work and I will be ok. I am having a tough time mentally lately! I exercise and feel pretty good physically most days. I've been lucky that way. I guess what I'm looking for as I write this is... some positives and any success stories you can share with me! I'm scared every minute of everyday. Thank you!! LaDonna
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Paratroop1
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I send you love and lots of hope. Hang on in there, look how far you have travelled already. I am very recently diagnosed with extensive mbc and the wonderful stories of courage and survival with different lines of treatment from the ladies here, helped me so much.
I try to take it one day at a time and savour every little blessing. One of which has been reconnecting with different family members. And also the stress of my job (which I loved but really took it out of me) which is gone… I read and think snd smile and enjoy the sunshine snd my husband learning to cook
I’m sorry I can’t share sny ‘success’ story as it is early days for me and they are still finding out how bad it is!! But knowledge is power and I feel powerful and you should too.
Thank you so much for the encouragement and support! I have three wonderful sons along with my husband and friends...I will get through the good and the bad! I'm thankful today for you and tye other ladies who responded to this post! Thank you so much!!
I wish there was some success stories I could share with you right now but what I can do is wish you well in your treatment hoping you will triumph through them as everyone here is rooting for you to battle on. Keep faith and remain positive as we are all on this difficult journey together you will be in my prayers stay strong love and best wishes.
This is a scary battle we go on. I will share my experience thus far on my healing road. I strongly believe my mbc was my wake up call. Just slowly killing myself, stress, eating, alchol, shutting down and hiding from me. There are signs and people who show up for you to listen to. I am on my 4th cycle, it's a journey. For me breast cancer is the worst thing, but also the best thing that has happened to me. I think most of us feel the fear when we first hear mbc because there is no cure. Yet, we hear stories of radical remission. I. I strongly suggest meditation and start to get out of your head if that makes sense. You are not going to heal when all you feel is fear. Accept the fact that we live we die...we all die at some point in our life. Embrace this...then...start living !!! THRIVE !!! You are blessed with an amazing person by your side. If you spend the rest of your life in fear, you miss the beauty of it. There are good days, great days and bad days. You wake up blessed you have a new day with beautiful possibilities 🥰. On the days not so great...fake it till you make it. Live on sister. Once you lasso that fear live is absolutely amazing beautiful, be a part of that. Meditation helped me with that..give it a try. You will eventually be able to breathe through the fear and boom one day it won't be there 🙏❤
I have gone through so much cancer! My mom with breast, my late husband died 2015 of brain cancer, and my dad committed suicide two years ago...so much sadness and then the start of a new life when I met my current husband whom also lost his wife to cancer 2017. We are so blessed we found each other and I do need to realize the beauty of my life today!! Thank you for your words of support! I survived for 11 years since my first breast cancer...I expect to that again and many more!! Have a wonderful day!! I appreciate you!!
I am so sorry for your loss. I understand the pain. Remember it was their journey through their own lives. When somebody so close to you passes, remember their essence, their kindness and how they made your life that much better. Light a candle and say a thank you to all you have lost. But you must continue. Keep that positive attitude. You will be surprised how much that will carry you 🙏❤
Dear Paratroop1 The fact that you are able to exercise most days and feel well most days allows you to do what Debbiegbang suggests, which is , "fake it till you make it". I too am in a bad way mentally. Reading the "fake it till you make it" speaks to me. That is what I try to do. Put on a happy face and a good smile and your people that you love will give their happiness and love back to you. It is so easy for me to make suggestions but not so easy for me to live them.
I wish I could give you a real hug but a cyber hug is all I can offer in the physical touch dept! I don't remember anything you may have posted here before, but let me tell you that I have been living with denovo (from the beginning, first diagnosis) for over 17 1/2 years, diagnosed in March, 2004 with "extensive bone mets" . Educating myself about MBC has been one of the ways I've coped. I've attended several national bc and mbc conferences and met alot of other metsters including those who've been living with this blasted cancer for 10, 20, even 30 years! I realized several things early on: I cannot control the cancer cells, but I can control what I do about them; focusing on the big picture, the long run is less anxiety producing than worrying about the smaller bits and pieces such as the results of one test or something new and negative that I learn; there is alot of misinfo out there and it's best to ignore it; keeping my sense of humor is really importnt and I try to find the humor in all this. I'm fortunate to have grown up with parents who were not afraid of discussing death. I knew from an early age who I would live with if both my parents died. My youngest brother almost died from measles and my other younger brother and I stayed with our grandparents during the worst of that and we were kept advised of how he was doing. When a pet died, we had "funerals" for them and helped bury them. First was my pet rat, lol! Talk with some one about your fears--often getting them out in the open helps. Oh, I also found a really wonderful CD on cancer, by a psychologist named Bellerruth Naperstek, who has studied the mind-body connectiion. She has a soothing voice and her work is available at a website called healthjourney.com. iPod down loads, too. Also, don't be afraid to cry, scream, hit a pillow with a baseball bat or whatever. I hit alot of pillows and wrote alot of angry poetry the first couple of years I had MBC. Again, sending love, comfort, prayers and cyberhugs...
This is wonderful news!! Those are all great resources and I will call the cancer counselor today at my cancer center. She is suppose to be wonderful! I hate fear! It has controlled me for so long! My boys have been through so much too with losing their dad to brain cancer, their grandma to breast and grandpa to suicide just two years ago! 💔 I think that's my biggest fear is hurting them again! As a mom I feel like all they've had is sadness and death and I'm suppose to protect them! I have overcome and handled it well, at least in front of them...I will continue to be as positive and fight, and fight, and fight for me and for them! Thank you so much for your reply to my post and best wishes my friend!!!
Your sons have had alot of loss in their lives! Maybe the cancer center counselor will know of good resources for them, too. My on mother lost her sister, her only sibling and her mother within six months of each other. I know that was painful for herbut she did go on with her life and was a great mother, always had good friends, and told such wonderful stories about them that in some ways I felt I knew them better than I did my living very private grandparents. Life is so unpredicable!
I am sending you some hugs and positive vibes. I am on Ibrance, too, for about a year, and although I feel good physically and am able to get out to play golf and exercise, there is always the thought about when the Ibrance might stop working and what would be next. I try to push those thoughts to the back of my mind and simply enjoy each day that I am here, but some days are easier than others to do that. I get especially anxious around scan time. My husband has also been wonderful since I was diagnosed and encourages me to look at all of the positives so far in my treatment and not worry about the future. I read the stories of women who have been on Ibrance for 3 years, 5 years, etc. and am very encouraged by those stories. Having support from family and friends and having a good medical team are positive things to focus on to help you through the days when you are struggling. Doing meditation and breathing exercises can help, too. I also have a therapist. He tells me to replace negative thoughts with positive thoughts and that can help, too. Please hang in there and know that you are loved and supported.
Hi LaDonna, Hang in there. Don’t live in fear while you are feeling good - enjoy everyday that we are blessed with. You’re missing all that’s beautiful around you when you focus on your fear. I’m not going to lie to you - ibrance failed me recently and I wasn’t in a good place. But I just had a consult up at Dana Farber and there’s a ton of other stuff in the clinical trial phase that shows promise. And new combos of existing drugs as well. I was really encouraged by all the potential lines of treatment that are available. There are other SERDs that could be available before the ErSo that people on this board are excited about. There a trial for another CDK46 inhibitor that also inhibits CDK2, which is suspected to be the pathway that the cancer takes to elude ibrance. There’s an anti estrogen treatment in clinical trial.
I can share specific drug names with you if you’d like but the idea is that there’s a lot in the pipelines that have the potential extend our lives. Focus on that - have hope! And yes, meditation.
Cheers! You are alive and breathing right now and that is the only guarantee any human alive has. Plenty of perfectly healthy people will die today, just out of the blue with no warning whatsoever. I know this disease sucks, but we have today at least. Please be kind to yourself and do something you enjoy every day. I get very scared too some days, but I force myself to use the time I have to not be scared. I’m on my second line of treatment and doing well at 6 1/2 years. Mets to bones and stomach. Was so sick last winter before they discovered the stomach mets, I thought I would die. Now I’m up and about, moving slowly but we are in the process of moving and so thankful we can. It’s hard. Best wishes to you!!!
Some days I'm scared too...every minute of that day! This trip is a Rollercoaster. But then I remember how grateful I am for those who love and support me, and I realize I have to be strong. I also have faith in my onc's plan for me, and I think about all the breakthroughs and the many meds available to us!
I also think though that once in a while it's ok to be down and scared. We are human, but we have to try not to let our fears consume us. I'm still working on this! It takes alot of work!
Being scared is a big part of this illness because we are told that there is no cure. After reading a lot of books on cancer and on illness in general I discovered that many things thought to be terminal are curable.
I want to share my journey in the hopes it helps you to feel confident and not scared.
My journey started five years ago when a lump was discovered in my right breast. I went through 7 months of chemotherapy to shrink the tumor and then had a lumpectomy. I was well for three years and then was diagnosed with stage four mbc.
That was two years ago. At first I was terrified but then I started reading about cancer and started to feel hopeful. I have been on Ibrance and Letrozole for a little over two years. Now, my scans show no evidence of disease NED. I was diagnosed as stage 1V in the beginning (two years ago) so, of course, I am very, very happy right now.
My oncologist wants me to continue with my drugs. So I continue taking my drugs and will have another CAT scan and bone scan in six months. I also have mbc related osteoporosis. I also have started taking a small daily dose of calcium. And I also have several autoimmune disorders that are improving a little bit. I am planning on adding bone broth to my diet to help with the osteoporosis.
Because I am doing well I feel that many of the things I am doing are part of why I am doing so well. So I want to share this with you in the hopes that something I say will help you too.
Step number one for me was to stop thinking that I was incurable.
When I stopped thinking of my illness as being incurable I started reading books on nutrition, reading cancer success stories and doing some meditating (although not always faithfully). My husband and family showed incredible love and support.
The people and the books that gave me hope and some guidance are William Li's book Eat to Beat Disease, Jane McLellan's book on her journey to fight cancer, Wim Hof's You tube videos on how to use cold to kick the immune system into high gear. Because of Wim Hof I now end my morning shower with a cold shower. It was hard to do at first but now it feels very wonderful. I also watch tons of You Tube videos on how to prepare delicious vegan and vegetarian foods. I eat all foods but some of the foods like meat and chicken and eggs and dairy I now eat in moderation. They used to be the biggest part of my diet but now they are the smallest part of my diet. I have made room for smoothies and vegetables. I have just started including a garlic drink to my diet. That is not easy. If you want the recipe please just ask me. I also drink turmeric teas and have a daily dose of dark chocolate. I try to add other herbal drinks to my daily diet as well.
I am going to try to do more yoga. Currently I just do some stretching. I also spend time on my WAVE MAT. I bought it on line - it is from New York. And I lie on it and read my novels while the heat of the warm crystals penetrate and soothe my body.
In my life I never relaxed. I always put myself last. I learned that it is the path to illness. I now am learning to be lazy and not spend time around people who make me cranky. And my husband who is a loving guy can be domineering and I have learned to stand up for myself with him too. Our relationship is much better when I am honest with him. But he has been very kind and supportive and now does a lot of dishes....heh....heh....
When I go for scans I visualize the radiation going into my body and healing me. I picture the rays as loving rays. It has helped me to dispel the anxiety I feel when I have scans. When at home I smile at myself in the mirror and tell myself that I am healing. I do this every day. That kind of self-soothing talk helps release endorfins into my blood stream. There is so much evidence now in the scientific world that tells us how to activate natural healing endorfins and cannabinoids into our system. It is all a bit hard to understand because we never thought of healing as something we could do for ourselves. We were raised to believe in an external type of healing. Now I am learning about ways I can be part of the healing process. It is helping me to be less frightened. Of course, I am human and do get scared and worried but now feel I have the tools within myself to calm down and be happy.
I will continue on this path - always believing in the power of my own body to heal myself. I have also been very introspective over the last couple of years. I asked myself how I created this cancer. The answer surprised me. So now I feel I have more control over my life.
I pray that all of us find a way to heal ourselves. Our medicines are only one path and we should be confident when we take them - or so I think. But there are so many other things we can do to help ourselves heal. I know many of the ladies on this site have found ways to stop their cancer from progressing and some of the ladies have reached a point where they are healing. So please dear soul be happy. Believe in yourself. And spoil yourself - I mean that. I even bought a lot of new clothes....heh.....heh.... because I wanted to believe that I was worth it.
Please forgive the long ramble. I really want to help you to stop feeling scared.
I am sending you my love and am wrapping you in a hug. I too am newly diagnosed (April). For me dealing with a life of uncertainty is the hardest part. When the "what ifs" creep in I try to remember all the good things I have in my life, I try to go outside and enjoy nature, if I have the energy I go for a walk, etc. Basically anything I enjoy doing to distract myself long enough to stop the cycle of what ifs. Sometimes it's easy to do and others not so much. I am finding this web site to be very helpful. Just know you are not alone and many, many women with MBC are living many fulfilling years after their diagnosis.
Hi LaDonna - I am sure everyone on this site can relate to what you are saying - I know I do. I was diagnosed de novo last November and have metabolic complete response (for now) with very limited side effects. I have made quite a few changes to my diet and fitness regime but the psychological aspects remain challenging, as do pretty big questions about what I do next in my life. I really try to work on these but I can’t lie and say I am there yet. It’s an ongoing journey and challenge and I know it’s impossible for anyone to truly understand what another thinks and experiences but reading some of the stories on this site helps!
I am on Ibrance and Faslodex for just over 1 year… I got scan results last week- stable so csn relax for a bit longer. I hate that anxiety of every moment thst cancer can bring. I feel it most when I have pain. I had it in the beginning mostly when I tried to sleep. So I just blocked it by listening to pod casts to go to sleep. And keep exercising! Good for you! Distraction with friends is also very good
LaDonna, Mets to the bone 2018. Meds, side effects, scans, side effects, Faslodex injections every 28 days, Ibrance every day. Side effects! BUT I'm alive, I'm happy, I eat well, keep my house clean, never go anywhere except Dr's. Since I have cancer I can't expect more than being happy and having pleasure being alive! 😂🤣😂🤣😂 A great sense of humor really helps! Tomorrow is another day. Bless you!😂🤣♥️🙏
I feel you. I have been on ibrance and letrozole since ce Feb 2020. I have reduction in my tumors and lymphnofes with no progression. It has taken me 1 years to accept the MBC and I have given it over to God. Neither big pharma nor my Onc is on control of my outcome. Try not to worry... for it does not add one day to your life (Jesus said this to us) I know easier said than done. I just started the COC protocol to give me an even bigger boost with tumor irradication. Prayers for peace and strength to you as you wade through this difficult journey.
The worst thing you can do is worrying about tomorrow! Many people you know right now without illness, maybe dead before you! Everyday is a new day! We can’t have control over this disease or anything else,so you are wasting your good life on the negative! My answer is to enjoy yourself, stay strong with faith and be grateful for the time you’ve had so far! It’s almost 4 years since diagnosis and years ago, without these new treatments, people were dead! I’m not giving in to this damn disease and I’m going to do my best to enjoy my family and friends! You need to stop worrying and focus on the beautiful life I’m sure you have! God bless you going forward!❤️🙏🏻
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