Ibrance (Palbociclib)
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thank you ladies for the comments about doses and schedule changes. I’ve been on 125 for this first year, but this past month my counts were so low even w bloodwork falling a day later than my usual. And my iron also dipped and I’ve battled more fatigue for a week past the usual. My onc suggested dropping to 100 next month if my bloodwork is similar. I’m actually terrified of that since this has been working. And other than extra fatigue/naps I’m stable and feeling well. Hate this roller coaster. Hope you are all well and enjoying the start of summer (well if in the US)
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Mine was reduced to 100 and then 75. It seems to be working ok at the lower dose
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how long were you on 125 until they moved you to 100 and then 75?
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Sully01 I have been on 75mg of Ibrance for close to 2 years. I recently was switched too alternative dosing because my neutrophils would drop super low and took two weeks to come up even on 75mg. It has been two months since the change and so fare so good with the blood counts. They are still low but nit like they were.
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@brutersmom thank you. That’s so encouraging.
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I've been on 75mg for over four years. My body could not handle 125, ended up in the hospital with neutropenic fever after only one cycle of 125! Been on 75 ever since. My doctor said the efficacy is not dose-dependent, it's whether your body responds to the med or not.
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@sully01 , Please don't worry about dropping to a lower dose of ibrance. You'll be OK. I started with 125mg, and stayed on it for 1 ½ years before moving on to 100mg for 3 years. I've just dropped to 75mg last month. It's been rough when my Neutrophils dropped but I try yo keep on top of things in order to avoid potential crises by closely monitoring any signs of mouth/throat/chest or stomach infections because that's where my signals of an impending infection start. I wish you and everyone else in this chat, a smooth ibrance experience
I have to add that being in this group has been my lifesaver because it's where I heard of alternative dosing schedules like 5days on/2days off; and 2weeks off/2 weeks on. That helped me last longer on the 100mg because I told my Oncologist I was reluctant to change to another CDK4/6 if Ibrance was working. My special heartfelt thanks to all the the women here whom I've asked countless questions, whose experience has guided me and from whom I've picked so much information.
Love, hugs and blessings to all because you are the best 🙏🏻❤️🫂
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Hi ladies! After quickly daily Kisqali due to liver issues I am on Ibrance. We tried Ibrance a few years ago when I had a small reoccurrence and my blood counts were problematic. Now that I’m stage 4 we are trying it again. After one cycle on 100 mg I am already dropped down to the 75 mg. I know my onc does 3 weeks on and 2 weeks off as an alternate schedule for some patients, but they have said the drug company gives them very little guidance on this. I appreciate all of the posts about alternative doses because I feel like I am going to end up there. For those who do 5 days on and 2 days off, is that done for 3 weeks on and 1 week off? How does that work?
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I was down to 75mg by the end of my 4th month. This became 3 weeks on 2 weeks off. I started getting monthly sinus infections. I ended up 2 weeks on 2 off. I switch oncology centers and I was switched to 5 days on 2 off. So far my neutrophils are above 1 when I get monthly labs and I feel better. It has only been 2 months but I am hoping it continues.
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@alden722 With 5 days on/2 days off, it's continuous. You don't take a week off b/c you take off 2 days each week. Of course you and your doctor can do a schedule that would also incorporate a week off. I tried the 5/2 cycle and didn't like it. I like having a full week off.
My doctor and I do not worry unless my ANC gets below .7 so I have stayed at the high dose all this time and am not often sick. She would be more concerned if I were frequently sick. Many of us also discovered that ANC counts are often higher if you have labs in the afternoon rather than the morning.
Best wishes as you figure out the dosage that works best for you.
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Chicagoan. Why didn't you like the short breaks. So far I feel more consistent and overall have more energy. I had maybe 2 or 3 days at the end of 2 weeks off that I felt decent.
So far, I have only found my difference morning vs afternoon to be about .2 on a good week. Even then the if I started right after one week, I would be a mess by the end of the next cycle with mouth sores or sinus infection etc. It is such a hard thing to figure out because our bodies react differently. I did learn that I am very slow to recover. I needed to be above 2 to have my knee replacement surgery. Timing gave me 4 weeks to get my neutrophils above 2. It took 3 weeks just to get to 2 and then another week above 2 to make the surgeon happy. I got the ok to go ahead with surgery about 4 days before the scheduled date.
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@brutersmom I prefer having an entire week off from Ibrance-two days doesn't seem like much. To each her own.
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OOk. I am glad we have options since we all react differently to meds.
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I tend to get bloodwork done early in the morning because it’s an hour drive to my cancer center and I am still working full time and I have 3 kids. Going later in the day means driving in to bad traffic and missing all of the evening activities of my kids. I usually just get up at 5:30 and show up when they open at 7:00 and get home and start working by 8:30/9.
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@alden722 I used to do the same-get the 7 am appt and get out of there. Now I take the later appts b/c I want to avoid arguments about lowering my dose. If I'm not getting sick and have enough energy for all that I want to do, I'd prefer to stay at the high dose b/c it has worked well for me.
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have any of you struggled with hair loss? I used to have really thick hair but I went on tamoxifen about 2 years ago and now between faslodex and Ibrance I feel like I am losing a lot of hair. It’s definitely not thick at all anymore. Is there anything that helps?
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alden722
My hair thinned on ibrance galore combo but never lost all. It stopped thinning any further but never grew back to original thickness. Very dry texture.
I am on 75 mg ibrance and galore shots once a month.
Waving hello to all.
Tanya
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@brutersmom how long did you last on each ibrance dosing?
Indeed, we all react so differently to the same medication. But, there's beauty in diversity
@tanya_djamila I missed your update during yesterday's Zoom meeting because I was moving around doing stuff in the house. I hope you're doing well.
Hugs and blessings to all
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