Hi Its lovely to find this page and be able to share with people who understand. Coming to terms with this has been pretty difficult as you will all know. I really want to keep positive on this journey and believe I will be here to see my girls grow up - just need to figure out how to do that! My background story is that in 2015 at 42 years old I was Diagnosed with 1st stage Breast Cancer ER + and HER 2 - and aggressive. Double mastectomy and chemo. November 2019 diagnosed with Stage 4 with Mets to lungs, liver, lymph nodes neck and subcutaneous. Treated with Triple M chemo, 50% improvement, but growth soon after finishing treatment. June 2020 started Ibrance and fulvestrant. No new scans yet as too soon. I hve never had any tumour markers elevated so monitoring is done via chest X-ray and Ct scan. My Lymph node Mets have caused pressure on my vocal cord nerve paralysing it and making my voice hoarse. Hoping this will improve.
Have 2 gorgeous girls aged 13yrs and 15 yrs who I want to be here for long term.
Love to hear from others with aggressive stage 4 responding well to treatment - love positive stories - want to keep as positive as I can, and also anyone who has had vocal cord issues and ideas that may help? Also others with kids of a similar age? Thanks ❤️
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pinklemon01
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Hi pinklemon - I love your tag name! Here in Oregon there is a non-profit called "The Pink Lemonade Project" that offers events, retreats and support for women with breast cancer.
I just wanted to write briefly to say welcome, so sorry you are here but so glad you found the site. I can't help you with your specific issues, I'm older (65) and don't have the same mets. But it's been almost three years since I was diagnosed with "innumerable" bone mets and liver mets and I'm still here and living well, the cancer is well-controlled.
Many women on this site have had excellent results with Ibrance and Fulvestrant, I'm sure they will chime in with their stories.
You were going through the Triple M chemo as COVID surfaced and changed all our lives....you are focusing on the positive... you sound pretty darn tough to me! And you have the best motivation in the world to stay positive. I wish you all the best and hope you find good support here.
Thank you Patty, what a beautiful message. Appreciate you taking the time and sharing your own journey. All positive stories are inspiring to hear. Thank you for your kind words ❤️
Welcome - you’ve come to the right place. I’ve always find everyone so very helpful and full of knowledge on this forum.
I was diagnosed with widespread mets to bones, lung & liver just over two years ago. I’ve been on Ibrance & letrozole for nearly two years & have only just shown some progression in the liver. I’m now looking for a treatment change.
I tolerated Ibrance really well and didn’t really suffer any side effects except for occasional fatigue.
I hope this treatment works well for you. You do sound very positive and this definitely helps.
Thanks so much for yr lovely message Jo, wonderful to hear you are doing so well a few years down the track, exactly what I need to hear. Sorry to hear about the recent progression which is always hard, gd luck with yr treatment change, I’m sure it will work wonderfully ❤️
Hi there
Welcome to this great site.
I am 51 and have a son who is 14 today.
I was diagnosed with mbc in April 2019 and have been on Ibrance and Letrozole.
It took me a good 8 months to get over the emotional aspect of the diagnosis and settle into things. I felt better after the first month of the tablets, with much less shortness of breath and pain. I continue in my job and do most activities I did before diagnosis.
You will settle and I’m sure your symptoms will improve. The support, knowledge and advice on here is great. Plus you will find some like-minded friends.
Thank you so much Clare, yr message brought a tear to my eye! Thank you for sharing yr experience and the lovely support. Yes the emotional side of this journey is so difficult, it’s hard to get on top of the worry for me and for my girls abt whether treatments will work and keep working but glad to hear things have settled for you, and look forward to the same ❤️
Welcome to the group ❤️ I was a few years older than you at initial diagnosis. Declared cancer free after double mastectomy, reconstruction, chemo & radiation. And then smacked in the face in February with a MBC diagnosis after over two years of misery and doctors telling me they were 99.9% positive I had crohns disease. It took a few months to really process it and accept it as our new normal. For a time it was on my mind 24/7. I couldn't deal with talking or thinking about a future. It was all I could do to hold it together when my husband spoke about our future plans and just the thought of future plans for my children like high school/college graduations, weddings, grandchildren would put me over the edge.
But time marched on, I started taking Ibrance and Faslodex which improved my health immensely without many side effects, I started reading these boards and seeing women thriving and living with MBC, and my constant worries and doom & gloom for my future began to fade. What used to occupy my thoughts 24/7 is now just a niggle of a worry at the back of my mind. It hits me once in a while and I have a good cry and move on. But those episodes are growing farther and farther apart.
I wish you all the best on the crazy journey we've all been chosen for ❤️
Thank you Shelly - that pretty much perfectly sums up my worry circle in regards to the kids and my experience with my first diagnosis as well. Thank you for sharing your journey and I’m sorry it was so difficult trying to get an accurate Mbc diagnosis. So glad you are feeling well now physically and emotionally now, I look forward to that. It’s great to hear that others are doing so well ❤️
I am glad you found this group but am very sorry for the circumstances that brought you here. Probably most of us would agree that the months following an MBC diagnosis can be exceptionally difficult, and that over time the degree of anxiety may tend to lessen.
I was diagnosed in 2011 with Hormone Receptor Positive, HER2 Negative MBC after 4 years of misdiagnosis, and my early stage breast cancer had been misdiagnosed from 1989 - 1993. After a total of 8 years' worth of misdiagnoses, I realized that I had to do my own research and gather treatment-related facts in order to survive.
In 2011, the cancer had spread to my lungs, and I had pleural and pericardial effusion. Since on of the lung lesions was pressing against the laryngeal nerve, my vocal cord was paralyzed and I could barely speak. Once my treatment (letrozole) started to work, my voice came back, although now it's gone again despite having good scan results.
With respect to the vocal cord issues, once your treatment begins to work, your lymph node may shrink and your vocal cord may begin working again. You should probably visit an ENT, as there's an outpatient procedure to bulk up the cord, as well as other options. I've joined a Vocal Cord Paralysis Support Group on Facebook, which has been helpful.
As an aside, if you w,ant to learn about approved treatments, cutting edge research, finding clinical trials, and more you are welcome to read my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For information please visit: insidersguidembc.com/about
I hope you respond beautifully to your treatment and send you best wishes!
Thank you so much Bestbird - it’s great to hear of others out their with a vocal cord issue - I will join the Facebook group as great to have new info. Thanks also for the link to the PDF book - it’s reassuring to be sure you are as to date as possible with the best possible options and treatments. Sorry to hear you had such a tough journey with yr diagnosis. Thanks for the good wishes re treatment and all the best to you as well ❤️
Welcome to this group. You sound like you are on a pretty even keel which is good when you are dealing with teenagers! One of the best things you can do for yourself is get enough rest. Ibrance tends to cause exhaustion or tiredness to many of us so getting enough sleep and slipping in a nap is really helpful for keeping you steady emotionally and physically. Do you have pain from your mets? I have multiple bone mets, all of which cause pain but my oncologist is good about giving me what I need. I just need to be better about knowing when to take it sometimes so the pain doesn’t get me in the middle of an activity.
I am 72, diagnosed 2 years ago with MBC, and diagnosed 9 years ago with my original breast cancer. I have 4 grandchildren, all living locally (ages 10 down to 5), so I want to stay around for them. My 8 year old granddaughter and I have started sewing together. I can’t bear the thought of leaving her so I’ll trust my doc who said I had 10-20 years. Not counting on 20, but I’ll definitely take 10. My mets were caught late so I’ll be happy with what I get and try to live it day to day.
So tell us more about yourself. Can you do everything you used to do, have you had to give up something you love to do, how are your girls taking the news. We have comments for everything and you are free to take our advise or not! We don’t throw you out if you decide to go a different direction, we just cheer you on in that direction!
Hi Elaine thanks for taking the time to reply. I have been doing pretty well on the ibrance and fulvestrant, I have noticed the tiredness though. Have also noticed that if I don’t have enough to eat with ibrance that I get quite nauseated so make I sure I do that now. My Mets don’t cause major pain although I get some breathlessness and slight chest pains. How special to have your grandchildren so close ❤️
I can do most things I used to do but don’t really have the same stamina at the moment, and I am on leave from my work while I get this under control.
My girls know I have breast cancer back and that it’s the kind that’s hard to get rid of but haven’t told them about the Mets. I wld rather not do that until they are a little older. Both times I have been diagnosed their first question is yr not going to die are you mum? So I don’t want to scare them more than I have to right now ❤️
Hi pinklemon. . .although I've not been posting on this forum, I have been reading for quite some time. So many knowledgeable women here, and so supportive. It was really important for me also, to read uplifting stories when I was first diagnosed (and still now). . .and there are lots of them. I was diagnosed August 2018, st. 4 de novo. By the time the smoke cleared and the testing was complete, I had a 3 cm mass in my breast (not really palpable though, as I have very fibrous breasts), axillary lymph node, and several lymph nodes of the lung. Mets throughout the lining of my lungs. Many other possible spots. Basically they dissected every part of me trying to track it down. It was very hard at first. My daughter had just turned 13, and as I already had mental health issues before this, it took my feet from under me. It didn't look good. . .and I probably read way to much on the internet. I couldn't see a future at all at the start, and the worst part was knowing what my daughter might have to go through. I was started on Letrozole and Ibrance right away. The fear was intense. I remember the day my daughter looked at me, and said. . ."But Mom. . .you're not going to give up. . .are you?" She was right, I needed to wrap my mind around it. . .and this took time. . .and then do everything I thought I needed to do, to heal. . .both physically and mentally. So go forward almost two years. . .pet scans have been clear for quite some time. No surgery, radiation etc. . .but at this point the cancer can't be seen on a scan. In fact, after a bit of a scare in the middle of covid, I recently had a breast ultrasound, and mammogram. The physician was shocked. . .perfectly clean. Hopefully an updated PET this fall will show the same. A long story. . .sorry. . .but please be encouraged. Please believe that healing is possible. There are so many treatment options out there now. . .and there is such hope! My prayer is that you will be with your girls for many many more years. My daughter (turning 15 in a few weeks) is praying for at least 30 more with me!
Hi Lookin-up thank you so much for sharing your journey, i really appreciate it! It is so wonderful to hear stories like yours and I’m so happy for yr wonderful response to treatment. I know exactly what you mean regarding worrying about your daughter and the things she might have to go through, it’s heart breaking, but love that yr scans are looking so good now! Thank you for your lovely words and 30 more years for both of us with our girls sounds wonderful to me!! Thanks again ❤️
Welcome to the boards. You will find a nice group of women who will hold your hand when needed. At 74, I am older. I have mets to lungs. I just took my last Ibrance pill from my 39th round. Will start 40th a week from Monday (it is Sunday here in Florida). You mentioned nausea with the Ibrance. There are new Ibrance tablets in bubble pack that don't cause nausea and you don't have to eat with food. I am guessing you are from the UK - I am sure they will be available soon. I like them better. The anxiety gets better except before scans, then it gets worse. I think all of us have that. Come back soon and I send you lots of hugs.
Hi Hannah thanks for yr lovely message, and sharing your journey. Interesting what you say about Ibrance regarding no nausea and not having to take with food. I am in New Zealand . The Ibrance I have is by Pfizer. Thanks again ❤️
Just want to add my welcome to you too. My cancer journey is quite different then yours.
What I have found though is that there are lots of treatments available and new drugs on the horizon. Wishing you well with your treatments. You have come to a very good place to get info and support. As has been said the ladies on here are amazing.
Just a quick note to say welcome! I was diagnosed with MBC March 2019; orig was 2012 and it was a total shock. Threw me for a loop, but things did settle in once treatment started. Since Covid I have been saying how truly lucky I am to have been diagnosed last year and not this when there is added drama, so my heart goes out to you. My sons are 25 and 30. My first question was should start knitting for my unborn grandchildren. Neither son is close to marrying. The doctor said not to worry...there would be lots of time. Have not even bought the yarn!! You can laugh. I am as I type this. Hang in there...great group here!
Hi AvidBookLover thanks heaps for the lovely welcome and sharing yr journey. That’s wonderful news re what the doctor said about having lots of time to knit! ❤️
Thanks Marianne for your kind words. Lovely to hear from someone on the same treatment. I am really hopeful this will be our miracle. All the best with yr treatment too ❤️
I always hesitate to say welcome to this site as it’s not a site any of us want to belong to. Thank you for sharing your story with us. This group is amazing with their support and knowledge. I am sure there are many women here the same age as you. I’m older (56) and have Mets to numerous bones. I may not have the same form of MBC but if you ever need somebody to vent to, I am here. ❤️ Sarah
Hi Rubyc great to hear from someone else in a similar situation. Thanks for sharing. Can you let me know how you get on with the injections and what they are? My oncologist has suggested a referral to an ENT surgeon at a later date for “fat injections” which bulk up the cord but I want to make sure I’m doing the best thing for not only my voice but also my breathing. Sometimes since my vocal cord did this I feel short of breath and don’t want to make that worse. All the best
Finally I have an appointment with ENT doctor next Tuesday July 28th. I believe he is looking down my throat with a scope and it goes down through the nose. I will let you know how it goes and what he says. I understand from others that bulking up the cord is what they do. I too get winded when I have to speak, especially if I have to raise the volume of my voice in a crowd. It has been 10 months since it started and I would love to have it fixed. I will email again after the appointment.
I have had that scope done too when I was diagnosed - it’s not too bad. It’s been 9months for me too. Good luck I really hope it works. It wld be wonderful to get yr voice back to full strength 😊
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Newly diagnosed Stage 4 with mets to liver and bones
starting Xeloda (capecitabine)
My Journey
Liver mets
Breast surgery for de novo Stage 4
