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Nov 14, 2019 04:32AM
I’m on my 26th cycle of Ibrance/Faslodex. I had previously been on Femara. My oncologist wanted me to try Ibrance with Faslodex, to give me a break from aromatase inhibitors. I had taken Faslodex by itself a few years earlier and had progressed, so I wasn’t optimistic, but I’ve had no progression. This combination has been a game changer for me. AIs made my bones hurt worse than my bone mets. I used to be unable to walk up the stairs in my townhouse without aching. I am now able to work out daily: bike riding, weight training, power yoga and 3-mile walks. Less aches. That doesn’t mean fatigue isn’t an issue, but at least I’m able to exercise
The effects of Ibrance are cumulative each month, so my off week is usually the one where I feel the weakest. I don’t schedule a lot of activities that week if I can help it.
The foods I enjoy — spicy, citrus, crunchy — are the foods that can contribute to mouth sores. I use the “magic mouthwash” rinse every night. My MO at MSKCC said doctors are switching to a steroid rinse, but when I switched, it didn’t help my mouth, so I’m back to magic mouthwash, which I have filled at my cancer center pharmacy. My local oncologist writes the scrip for me. It’s benadryl, an antifungal, and something else. It’s a sticky mess and hard to remember to take with me when I travel, because you have to keep it cold. I sometimes put it in a S’well bottle, which keeps it cold for 24 hours. But I have to put it in my checked luggage. For carry-on, keep it in the prescription bottle, labeled, with an ice gel pack.
I bought a lot of surgical masks in the beginning, because I was worried about low WBC, but didn’t wear the masks long. I found out about hydrogen peroxide wipes, which kill norovirus germs. I carry them with me all the time. Amazon sells them. At restaurants, I wipe off the table surface, and wipe my hands after reading the menu and before my hands touch any glass or silverware. I also wipe my hands after using buffet utensils. I wipe down airplane tray tables, doorknobs, my car. Yep, I’m that lady.
Because Ibrance affects mucus membranes, and because I have radiation damage to my esophagus, swallowing is sometimes difficult, and I subconsciously avoid hydration. I have to force myself to drink water. I’ve found that icy cold water is best. A one-handed Contigo aluminum water bottle has been the winner for me. It has an extra cover to go over the opening, so it doesn’t spill in my purse. My mouth gets “hot,” particularly week 4, and popsicles help immensely.
My insurance company delivers my Ibrance to me through a mail-order service. It’s sometimes a drag having to start up each month. I sometimes give myself an extra day off before I start.
Ronda - Extensive mets to lungs & bones. My life is Stage IV precious. Celebrating 8 years with Stage IV 12/2019
2/14/2008, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
3/11/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel
12/19/2011, Stage IV, metastasized to bone/lungs, mets, ER+/PR+, HER2-
1/31/2012 Aromasin (exemestane)
12/19/2012 Faslodex (fulvestrant)
7/16/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/24/2014 Reconstruction (left)
11/21/2014 External: Bone
11/17/2015 Afinitor (everolimus)
6/1/2016 Femara (letrozole)