Ibrance (Palbociclib)
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Thanks Kaption. I must inject in my arm as butt is getting 2 fas shots. lol
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Hi ladies;
It has been a while since I posted.
Time for another CT scan and I'm a nervous wreck now.
Laladay1 I take xgeva and no big issues.
I love to read about the good news here and hugs to all of you ladies.
Cheers
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Hi ladies hopefully you don´t mind me popping over to your boards. I am a stage 3 survivor but I write in hopes you all can give me some insight for my mother who is battling stage 4. She was diagnosed in Dec. 2013. Mets in bones, spine and liver and had been on Letrolzole since Jan. 14. Recent scans showed activity and progression in the liver. Oncologist has switched her to Faslodex and Ibrance. Hoping ladies out there taking the Ibrance can tell me side effects??? My mom is 76 and spoke with pharmacy company yesterday and is now very nervous about taking the Ibrance. I can´t blame her...the side effects scare me too. Ibrance should be delivered today so I would assume after our talk with the oncologist she will start it today or tomorrow. Should I be concerned about adverse affects to her liver? Read in an earlier post about two women who died from sudden liver issues? I thank you all in advance for any insight you can offer....and again I hope you don´t mind me posting here.
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Thank you ladies for advice. Insurance finally approved so I start it tonight. I'm nervous about it. Anyone make the switch from afinitor to ibrance? Is it kind of the same side effects. All I got from that was mouth sores,diarrhea,and fatigue, a little hair loss and weak nails. Hoping for nothing more with this one.
I also go the natural route. So if I get heart burn I will use Doterra digestzen. It works really well.
The pain from the faslodex has gone away. I slept on a heating pad and that helped.
Any advice before I pop my first pill tonight?
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I have one more question. When I was taking afinitor I used to put it in a gel cap so that the medicine didn't touch my mouth or my throat while going down. Some people use marshmellow fluff. This process is suppose to help prevent mouth sores. Anyone try this with Ibrance?
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LOL! Never mind. I just opened the bottle and I can see that they are already in a gel cap. Do you all usually take the pill at the same time everyday?
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Yes, I take it at the same time every day, after breakfast. It sounds like a lot of people take it after dinner. The recommendations ar e taking it at the same time every day with food.
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Thanks for the heartburn suggestions. I do have DoTerra DigestZen!
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Digestzen is amazing. I take the pill and rub the oil clockwise on my stomach. I also take tons of other supplements. Does anyone take supplements as well. Just hoping that they mesh well with the Ibrance. I never had any issues with mixing supplements with Afinitor, but I used to finish the last of my supplements and dinner time and take the Afinitor hours later at bed time. Sound like I will have to switch that and take the Ibrance during dinner and supplements before bed. Sorry for all of the questions..I am just nervous.
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Ziz. Scan time is anxiety time. Try to keep busy! And hoping you get good results
Babs
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I've taken 21 days of Ibrance and been on an indefinite hold due to low WBC and hospitalization for infection which my body couldn't fight. Home now, WBC not normal but better so MO wants me to restart Ibrance. Question is, how long is Ibrance suggested to be taken? I was given Femara which worked for 2 1/2 years then stopped. Is Ibrance a similar type drug that one takes indefinitely or until it stops working? Thanks
Amy
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Yes, Amy you take it as long as it's working for you. Hope you get to feeling better soon
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Amy. You take the Ibrance until your MO feels it's no longer working
Bab
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Okay thank you.
Amy
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best wishes o ne scans ziz! The scanxiety is the worst......katyand4, I had to stop Ibrance due to elevated liver enzymes so watch those numbers. I haven't heard of too many cases of that here though. Also at your Mom's age just the WBC's and infection risk. Other than that I did pretty OK on this med. I always took mine right after dinner as it made me sleepy.....
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Thank you Artistatheart for the input!! Much appreciated.
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Zills, in answer to your question about the wedge, the one I bought online when I was having reflux problems in the past was described as "Acid Reflux Wedge Pillow (32"x30"x7") with Memory Foam Overlay and Removable Microfiber Cover". I was happy with it. No chemical smell. The idea is to have your upper torso, not just your head, on an incline.
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Hello, theziz. Hoping you have good scan results!
Katyand4 and sonyarizzo. I think Ibrance is considered to be pretty easy for most people, in the scheme of things. Your/your mom's liver enzymes, blood counts, etc. will be checked every two weeks at the beginning. If they are not satisfactory, or if side effects are too severe, the dose can be lowered. For example, I had a problem with mouth sores on the 125, but not on the 100. Just keep your onc informed of any side effects and we will help you here, too. It's really not too bad! Take it with a meal that is easy on your stomach, at least until your body adjusts to it. And I wonder, if you are very concerned for an older person, whether the onc would consider just starting at 100 instead of 125?
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Well, I survived my first dose. I was a nervous nelly and I think that made me not sleep well. I know that I am not out of the woods yet for any side effects as I have only taken one pill. How soon did anyone start to see some side effects. I do notice that the pain in my liver is a bit more pronounced. I just hope that is the chemo in there blasting the tumors. I did have a strange side effect last night. I have had night sweats before, but nothing like this. I had to change the sheets and my clothes twice. May be just a fluke or an unknown side effect.
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Hi sonyarizzo, I don't think the night sweat is from Ibrance. Did you just start Faslodex shots recently? I had hot flashes before, but when I started Faslodex they got much worse and very sweaty! I have never been a sweaty person, but after going on Fas I would have sweat running down my back and belly during the day and wake up totally saturated at night. I started taking a low dose of Effexor shortly after and it has helped a lot. Also, I don't think you want to use a heating pad after getting the shots. Check with you mo, but the consensus on the Faslodex thread is that it may cause the medicine to be disbursed throughout your body too quickly.
AmyQ, Sorry to hear you have just been through such a rough patch! Hoping better days are ahead for you. No advice on dosage as I have stayed at 125, but I'm sure your mo will work with you to get this figured out. My understanding is that Ibrance works at the cellular level to help the AIs (or in our case, Faslodex) work better and last longer. It is always taken with another tx.
Hi Ziz, nice to see you! Sorry about the scanxiety, but try to keep busy and hang in there! I just had a PET last Tuesday, but have to wait until the 1st for official results, so I'm right there with you! How have your se's been now that you have been on Ibrance for a while?
Hope everyone else has a good weekend! Best wishes to all.
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Hi Jobur.
Thank you for replying to me. I had my faslodex shot last Wednesday and didn't get these nasty night sweats till I started the ibrance last night. Maybe the combo did it?
As far as the heating pad. That's good to know. I usually use lidocaine and an ice pack before the injection and and an ice pack for the rest of the day and then those heat pads that stick to you for the next two days. Bad idea? Yikes I don't want the med to run through me too fast. I will have to look into this.
Thank you!!
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sony, it's good to know about possible SEs, but your post about surviving your first dose, sounds like you are actively anticipating them! Your post made me think of an exchange I had with a woman in my local onc's office. She was getting an Xgeva shot, and I knew I would soon be starting Xgeva and I was already fearing all the SEs I'd seen listed. So I asked her if she'd had any side effects as I walked past her to leave the lab area, and she looked up at me and said quizzically, "No. Why? Am I supposed to?" And you know, maybe somewhat because of that exchange -- knowing that she hadn't had any SEs -- I haven't had any real SEs from Xgeva either. Our minds can be very powerful that way!
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dlb823
After dealing with this for over 4 years I have tried so hard not to think about possible side effects of all the many different drugs I've had to take. It is really hard for me. As hard as I try to do the whole mind over matter thing, it works a little but my fears still creep up on me.
I have been this way my whole life and it's a really hard thing to change for a control freak. I go to therapy, I go to church and I pray about it every day.
I worried so bad when I started Afinitor(chemo pill) that I put it off so long that my cancer spread to my liver. Sad story. But after the first few dosesI took I saw that there weren't many side effects and then my whole attitude changed. I no longer feared it and I had peace again. I guess that's my process. I do it with scans too. I totally freak out and then once I have the answer even if it's bad news. I feel better because I have the answer and don't have to wait anymore. I know that all sounds crazy but it is typical control freak behavior.
I guess everyone has their process. The first night I took ibrance I had a panic attack and then I saw I was totally fine. Now I have no worries taking it. I know that side effects can still come, but I had nothing major happen like projectile vomiting or allergic reaction. So my fears went from like 100 to maybe a 30. I guess my only worry now is white cells dropping.
Oh and it's so weird because I never feared xgeva. I didn't know I was suppose to. Lol. It's so strange what we choose to read about and what we don't. I hear the word chemo and it sends me through the roof.
How long have you been on ibrance? I still do wonder how long it has taken people to see any side effects. So far I have none. Hope it stays that way. But would love to be prepared if it doesn't.
Happy Sunday. 😀
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Sony, I've been through my first cycle of 3 weeks and other than WBC drop, no other SE. I am the person SE are written about. I usually get them all but so far so good, so I hope it's gentle on you.
Amy
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Amy, Thank you! I am glad you are tolerating it well. I hope to continue to do the same. : )
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Hi theziz - hoping your scans go well! I'm encouraged that adding Xgeva won't hurt. My issues are with Ibrance. Sonya - for me, I noticed hair loss, bloody nose and gummy eyes starting 2 weeks into cycle one. I take my pill at dinner within one hour of same time each night. That works best for me - as I'm working and take clients for meals, also using a halo hair piece so no one notices hair loss at office or at functions (I went to an Oscar party last night). Biggest issue is fatigue. Relax a bit and please let us know how you tolerate Ibrance. Ladies has anyone been on Ibrance over 12 cycles? My onc has several patients over 20 cycles. Yeah!
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sony, did you know that -- in spite of some package labels -- Ibrance is NOT a chemo. It's a CDK 4/6 inhibitor. The chemo label has something to do with disposing of it, because it is a powerful drug. But it's technically not chemo, which kills all fast growing cells. Ibrance is much gentler. You won't find chemo mentioned in any of Pfizer's information. In fact, they're clear to point out that it's not chemo. It's mostly that drugstore applied label that's confusing.
I hope my earlier comment about looking for SEs didn't offend you. It sounds like you not only struggle with meds, but more importantly that you're aware of it, which is probably more than half the battle!
I have been on Ibrance since August, and I love it! Yes, I have some SEs -- gas, bloating, an occasional wave of nausea if I eat the wrong thing, and my nails look like crap these days -- thin and peeling. But I'll take it over chemo any day!
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Hi all,
It is so helpful to me that you share your personal stories with your hopes and fears. It calms me knowing that I am not alone in these fears which can sometimes be overwhelming.
Right now, I am on a break after my first cycle of Ibrance/letrozole. I didn't expect this drug to have as many se's for me as it has. The first 2 weeks went fine, but the main problem for me after that was the nausea, dry heaves, strange taste and smells that made food so non-appealing that I could hardly eat anything. Then, of course, I had the fatigue, horrible sweats day and night that made me want to tear my clothes off. I couldn't figure out whether it was the letrozole or the Ibrance or the combo of both that were causing these problems.
I have already received my supply of pills for cycle 2 at the 125 dosage, but want to take a lower dose. My onc would like me to take this dosage every other day so as not to waste the pills, but I'm not sure if that's recommended by Pfizer since the recommendation is to take it consecutively every day. Has anyone ever done it that way? I will be seeing him on Thurs. and I know he'll want me to start.
I've been feeling very depressed over all of this. I hadn't expected all these problems, since everyone seems to say that this is a fairly easy protocol. I guess I am the odd man out. Any tips would be appreciated.
Diane
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Diane, I am by no means an expert as I've just started my second go-around but it's my understanding that Pfizer has a pretty strict protocol regarding administration of the drug, especially since it's so new. Another member here, dlb823, (Deanna) has a lot of knowledge about this drug since her onc is associated with the team that developed Ibrance. Perhaps she'll weigh in.
Although I haven't suffered all the SE you have, I did become neutropenic which landed me in the hospital for a few days on IV antibiotics. I was questioning restarting the drug at the same dosage but my onc was pretty insistent that for many patients the SE lessen over times. We can hope this happens for you. Good luck -
Amy
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Diane, sometimes I hear about oncs tweeking Ibrance regimens and think, hmmmm... that might be a good idea... Ibrance is so new, maybe there are still things we need to learn about how to administer it when women have SEs. But if your onc is telling you to take your 125 mg RX every other day -- which would give you less than the lowest dose of 75 mg. -- simply not to waste an RX, then I think I would ask him, where is the justification for his recommendation? Where is the research that says this is the best way to deal with your SEs? I realize it's an obscenely expensive drug, but did you have to pay more than the $10 Pfizer One Co-pay?
I'm under the impression that SEs should be treated, either with an RX or something natural (i.e. ginger for the nausea). The only recommended reason per Pfizer for lowering the dose is infection or risk of infection due to low granulocytes (or ANC, depending on how your lab report them) that don't rebound as they should. I'm not a doctor, and your onc certainly knows you better than any of us do here. But I'm not sure your SEs even meet Pfizer's guidelines for dose reduction which are in a chart posted a few pages back. What your onc is doing may be totally reasonable for your situation, and if you trust him, then that's what's most important. Also, if you continue to take 125 mg. -- just every other day -- will you possibly not have the same SEs you do now, just every other day? I don't know. Just thinking out loud...
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