Starting Ibrance tomorrow

Imagine

Hello

I am recently DX with Mets to Chest wall and lung. I have started Falsodex injections and cant say I have had any side effects. I start Ibrance tomorrow 125mg. I am really frightened to start this med. Would really love it if I could hear some of your tips and suggestions on how to handle taking this medication. The side effects sound just awful

KBL

Hi, Imagine. I've been on Ibrance since June 2019. I have suffered with low neutrophils on and off throughout. On the 125 mg, I went down significantly, so I was off for three weeks and then dropped right to the 75 mg. I am now on a two-week-off schedule this round because my neutrophils didn't rebound enough. That's one side effect I've had. On the 125mg I did feel more fatigued, but it's not as bad on the 75mg. In the last month or so I have had some canker sores also. Other than that, it's been okay.

I take my med every day at 5:00 and set an alarm on my phone to remind me. I would forget for sure. I also make sure to take it with food.

I understand your fear, but it has not been that bad for me. Hopefully others will chime in and let you know it's been okay for them too.

Although my neutrophils have been low throughout, I have not been sick. My husband got sick, and I just made sure to wash my hands more often. I was nervous at first to go out in crowds, but I've settled down a bit.

Anonymous

Hi Imagine! I just started cycle 2 of Ibrance last night. Like KBL said, I set an alarm on my phone so I remember to take it! I take mine at 6pm. First cycle went fine, I did get a mouth sore - like a canker sore so I am rinsing my mouth with salt water after meals. It went away last week - I am pretty sure it is correlated to my low neutrophils but am not positive. Other than that, I felt fine! I work, but have been working minimally for the past few weeks due to the holidays. I did get low neutrophils so my oncologist delayed my start of cycle 2 and gave me another week off - blood test on 12/31 showed good neutrophils so I started. They told me that was common and sometimes they adjust like KBL. I didn't get sick but did kind of avoid crowds, within reason, during the holidays when my neutrophils were low. I Increased my hand washing and hand sanitizer use as well! I am happy to have started cycle 2 and have a lot of hope riding on Ibrance for all of us. I will tell you the first two nights I took ibrance I had a hard time sleeping but I think i was just worried - once I found that i felt fine, I slept fine. Hang in there, please let us know how you are doing once you start!

Anonymous

Hi Imagine --

I am right behind Aprilgirl - as soon as I finish my coffee and get my butt in gear I am off to the hospital for bloodwork and to pick up my second round of pills. You can join our little group of Ibrance Newbies!

I found it a little disconcerting that all I had to do was take two pills for this hot mess on my chest (and in my bones), and I've seen softening of the breast tumor (I'm de novo) which was nice, Ill admit. I did have considerable bone and muscle pain below the waist only, however I was also starting bone strengtheners and hormone suppressants at roughly the same time, so who knows what is causing what. I was delayed a week due to low neutrophils, and while everyone around me has gotten sick, I've also been really aware of hand washing and haven't been sick. Only other side effects I had were a smidge of nausea and a little bit of appetite loss. Oh and deep cold feeling in my bones, but my mom has had the same thing since menopause (they are checking my thyroid levels, just in case) though I've noticed that's gone this week off.

I have had a bit of a bobble psychologically with it - I felt very sad the first time I took the pills knowing well, that was it, this was life now, but after a day or two it just became routine. I take mine in the morning so that is cancer off my mind for the day (as much as it can be). And when I was held back a week I felt a little like I had failed at something, but really, they start you out at the highest dose and adjust downward as needed. I KNEW this and yet it was still surprising to feel that way. But hey, all of this cancer stuff is a mindf*ck really.

Come join the Ibrance thread - those long time ladies are really helpful for asking 'is this normal?' and for the most part it seems like once they get the dosing right everything levels out.

Spookiesmom

I just started cycle 6, 125 mg with letrozole. I take them in am with breakfast and all my other meds. Aside from some bone pain in one foot, and some fatigue, I’m finding this much easier than IV chemo. A Tylenol takes care of the foot pain.

Just because the list of se is a mile long, doesn’t mean you will get them. If something comes up, call your MO.

holmes13

I have been on ibrance for two years in February. I have been able to work full time, spend time with the family ( which includes two grandchildren ages 2 and 4, and i love to go on vacations. i do get tired easily but other than that i am leading a normal life. you just have to give your body time to rest when it says it’s time. i have been on 125 mg the whole time. my scan in november showed no active disease. i take my medicine right before going to bed. make sure you drink plenty of water