I was just diagnosed with metastatic breast cancer in October 2018. This is my second bout with breast cancer. I was initially diagnosed in August 2013 and I also found out I am BRCA1. I was cancer-free for five years before I found out that the cancer had returned and had spread to distant lymph nodes on the left side of my body. I am currently taking Ibrance and Faslodex and waiting to start radiation (for two weeks) to treat the large mass under my left arm. So far no bone or organ involvement although there is a nodule in my right lung.
Written by
Topaz_77
To view profiles and participate in discussions please or .
Welcome to the group! This is a friendly group full of supportive women who understand what metastatic breast cancer is all about. I hope that your treatment goes well for you.
Welcome to the group. The feelings when you first get the news are horrible but I’m sure that you will find the information in this group reassuring. And it’s so good to be in a space where others understand what you are facing.
I’m on Ibrance but with letrazole..my cancer came back after 24 years in my bones and also a few small pleural nodules..devastating news but so pleased I found this sit..the ladies here are so sweet and we all understand what having mbc is like..nobody else can however sympathetic they are
Hope treatment goes well for you.. I had radiotherapy for a broken vertebrae and it was fine..no problems or side effects
Thank you, Barb! I appreciate your response and am so glad I found this group. I definitely want to hear others’ experience with MBC, especially those who have been living with it. I love the idea that it’s not automatic death sentence. It seems like in the past when you heard someone was stage 4 they were on their way to hospice. I’m glad times have changed and are continuing to change and also that treatment has worked out for you. That’s encouraging to read.
I hope the radiation goes well. I’m a recurrence as well. It’s such a shock when you think you’ve won, only to be back at the starting line. I’ve been on Ibrance and Faslodex for 11 months. It’s working well. I hope your results are as good.
Welcome to the group Topaz. Praying your treatment goes well. My treatment is iBrance and letrozole. So far so good....dealing with the normal symptoms of each of the meds but tolerating them pretty well. I first had breast cancer in 1999. Then had recurrence in 2013 and now this year another recurrence.
Thank you! I feel so encouraged that you’re doing well and are in such good spirits in spite of. I pray they find a treatment that will put cancer in permanent remission for all of us. Thank you for sharing. 🙂
Welcome! I was first diagnosed in June 2015. Been cancer free since March 2016. Was literally just diagnosed in Sept with MBC. Just finished my first cycle with Ibrance (125 mg) and Letrozole; about to start my 2nd cycle end of this week.
Just a few mentions ... In the event you begin to experience bloating, the Ibrance has an unusually high amount of Lactose in it. Of everything I have tried, digestive enzymes seem to work the best to combat the bloat. Fatigue is normal and stinks! Oh...and drink as much water as you possibly can!
I hope you are one of the ones who has NO side effects!!
Thank you for your response and I’m sorry that you have found yourself with MBC, too. So far, no side effects from Ibrance. I’m just finishing up my third week. Good to know about the bloating because I’ve started to notice my weight going back up. Ah well, I’ll just keep pushing myself to exercise though I notice my energy waning at times. Thanks again!
Welcome Topaz_77. You found the right place for support, encouragement and positive empathetic women. It is a godsend for me( newly diagnosed also) after almost 5yrs clear from first run of breast cancer. Was on letrozole for that time now on ibrance and faslodex. Wish you well with your treatments! Marianne
Welcome. This is a great sight with a lot of amazing women. We all are in the same boat and try and help each other with our experiences, listen when we need to vent and provide motivational moments. Best of luck to you with your treatments.
You have joined a group none of us wanted to be in but welcome ! I'm in the mets group now-- and am on ibrance and exemestane. First diagnosed in 1996-- no nodes involved- local -- chemo and mastectomy-- then it reappeared in 2009-- radiation and aromasin. Then again in 2016- and I've been on the ibrance and exemestane ever since.... I really thought I did all I could to keep the cancer from coming back but unfortunately as many of us know-- it comes back whenever it wants... Mine is now in my nodes and in the bones-- PET scans every 3 months-- and just hoping it doesn't go any further. Stay on top of it !!
Hello, Topaz! You are lucky to have the information about your genetic mutation. My two sisters and I have all had breast cancer diagnoses, yet no BRAC mutation is indicated. We are told that it is likely there is a link but that it has not yet been found.
You do not mention whether your subtype is hormone positive? If so, I have read that taxane-based therapy is sometimes used for treatment of metastatic BRCA-mutated breast cancer.
There has also been a lot of research into PARP (enzymes in DNA damage repair mechanisms) inhibitors in the treatment of metastatic BRCA-mutated breast cancer. Olaparib received FDA approval in 2014 and Rucaparib was approved in December 2016. You may want to discuss these options with your oncologist. Or get a second opinion if your oncologist seems unfamiliar with these treatments.
You are in my heart and prayers as you journey forward. Everyone here is with you!
Thank you, Linda. I am ER+. Yeah, genetic testing was pretty much automatically included in the testing when I got diagnosed the first time. I will definitely include your recommendations this in discussion with my oncologist. Btw, is Taxane related to Taxotere? I did that treatment the first time.
I am sorry to hear another sister at stage IV. It realy is good that there is no organ involvement right now. The lung nodule may just be a nodule. People get them all the time. They come and go and sometimes simply stay without changing size or anything. I hope that your current therapy favors you and it will stop and get rid of the cancer that progressed. I hope that this group will help you through out your journey. There is lots of knowledge here.
Thank you so much for your response. I was concerned about the nodule but they are focusing more on my left side, which is where the cancer showed up both times and where it presently is. I did read that nodules can show up from infection and I did have bronchitis a few years back. I’m going ask about it though.
Hello Topaz, and welcome. So sorry to hear you are back for another bout. My Ibrance and letrozole seem to working at round 7, so try to keep your spirits up.
I'm sure your doctor told you but just in case please know that you cannot take ibrance while getting radiation and you should probably stop it a couple weeks before and not start it within a couple weeks of finishing - if she says it's ok to do - go get a second opinion because it is not ok.
I was told by the radiation oncologist and the medical oncologist that it shouldn't be done, l believed them. Then l met someone whose doc did combine them later she had back surgery it took 2 1/2 years to heal from that she was told it was because of her history of having combined the 2 therapies. Sorr y, l don't know more but l wouldn't chance it.
I was also just diagnosed with chest wall recurrence after 5 years of being told I was cancer free. And my masses appear to be under my left arm, chest wall and back. No lymph node or bone inclusion yet. Ibrance is the 2nd drug they sent me after a horrible time with Verzenio. My pain was out of control before Verzenio, was gone after 24 hours on it, but side effects were too much. So off all meds for a week of healing and the pain came back in 24 hours. I just finished my first round of Ibrance and it took all 21 days of the med and adding CBD pills to calm down the pain. Praying it works!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly Diagnosed
Newly diagnosed Stage 4 with mets to liver and bones
Recently diagnosed metastatic 
Newly diagnosed with BC. I am terrified but know I must remain strong to get through this long treatment.
