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Jan 12, 2021 04:20AM
Welcome to the Ibrance thread, I am glad you found us. I was dx with stage IV breast cancer in my superclavical node(s), mediastinal nodes and a few other nodes in my chest. So far, no mets in bones/organs. I have been on Ibrance and Fulvestrant for a bit over a year (started in November 2019). Like Cureious mentioned, it is common to have the Ibrance dose reduced due to low neutrophils at the end of a cycle. I just started on 75 mg last night (cycle 14 or 15?) It seems that every couple of months I needed to take an additional week off between cycles to allow my neutrophils to come back up and start a new cycle.
I did consult with a Radiation Oncologist when I was dx and their opinion was that radiation was not a good option due to the locations of the nodes, similar to what you have heard. I have received a petscan every 3 months since starting (first pet was technically 4 months after starting Ibrance/Faslodex). My petscans have shown no evidence of active disease and no FDG uptake since my June of 2020 petscan. I know this won't last forever but I am extremely thankful that I am responding well.
Side effects: In my case, I have had minimal side effects and feel really good. Initially, I did have a couple of mouth sores (like canker sores) and mouth wash helped. I did have fatigue. I contribute some of the fatigue to symptoms from my cancer and I felt really, really sick. I had no voice (paralyzed vocal cord from lymph nodes, and a significant pressure on my windpipe that made it hard to sleep). As I started treatment, these symptoms started to go away which helped me sleep better and also helped me emotionally. On the 125 mg I had some constipation, which is unusual for me. It was less on 100mg, as was the fatigue. Every cycle is a bit different. I had constipation one month, but didn't have it again for 3 months. So it is hard to say if it is Ibrance, Faslodex or ? I have lost hair - not sure which med is to blame. Normally I have very thick hair. I can tell it is thinner due to seeing it all over my floors (ha) and when I put my hair in a pony tail I have to wrap the rubber band 3 or 4 times when normally I could barely wrap it twice. My hair stylist has also noticed. I don't think the average person would think my hair is thinning but I sure can tell.
I work full time. I am self employed (residential real estate broker) and I was initially concerned if I could continue to work, would I feel ok etc. I am happy that it has not been an issue and for me work is a good distraction. I can set my own hours but selling real estate is not a 9 to 5 job and I consistently worked more than 40 hours a week. I have been selling for 10 years and ironically, 2020 was my best/highest amount of sales to date.
Keep in touch, definitely read through this thread and don't hesitate to reach out. I have so much gratitude to all who have helped me as I started this treatment and continue to help me as we all navigate our cancer treatments and life.
recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass
11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-