Ibrance (Palbociclib)
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Hi ladies…
I'm checking in and catching up here. I just finished cycle #6, and I've been a bit down lately. I've developed pretty severe neuropathy in my right foot (which I'm guessing is from the chemo I had last year), accompanied by pain in my right knee which may be the Aromasin. So I'm limping around like Quasimoto and feeling too exhausted to do much of anything. UGH. I also have the itches from Ibrance (oddly on just one side of my neck) and the sore scalp too. Mostly I'm just worn out but still hanging in at 125mg. The good news is that the tumors that i could feel on my chest wall when I started Ibrance have completely disappeared! I only hope it's working on the rest of me.
Thinking of you all and hoping this drug works it magic for us!
Rose.
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Hi Rose, It's so nice to "see" you again, but sorry to hear you are having a rough time. I only have a little experience with neuropathy, but from what little I know it really sucks! I'm walking better lately but still move like Ratso some days.(Remember the Dustin Hoffman character from Midnight Cowboy?) I'm happy to hear this tx has made those chest mets disappear! Do you have a scan coming up anytime soon to confirm more good results? Fingers and toes crossed! Hope your fatigue gets a little less as the days get longer and the temps get warmer. (ASSuming you live in North America...)
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jobur,
You're so sweet. And always nice to "see" you too! Of course I know Ratso… yep… that's the moves! I really feel incredibly lucky despite my whining. I've weathered much worse storms, just have my ugh moments as we all do.
Looks like you've been on Ibrance for a couple more months than I have. I hope your side effects have subsided and that it's doing it's job!
I look forward to the longer days, although I live in CA. so no excuses for me! Guess I'd better get out there and hobble around.
Love to you…
Rose.
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Jumping in. I've been MIA for awhile. I'm on round four 100 dose. My scans were better than expected. My bones are healing and they can't see the liver lesions. Yippee!
I'm also on xgeva and arimidex. Three of my fingers have swelled. Both MO and PT think it's the arimidex. I too have a full feeling in one ear. Hair doesn't cooperate but I still have plenty (so far). Sometimes my jaws pop or creak. Dentist thinks I'm clenching my jaw. Didn't see anything at checkup.
So my SEs are mild and annoying. I hesitate to switch my AI but will see how fingers respond to a glove. Of course I have fatigue but manage to do kids stuff, not so much house stuff.
Good luck to everyone and keep sharing!
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ibrance is knocking the stuffing out of me. I am on 75 for 2 wks and one week off. I'm finding that my RbC are so Low that getting enough oxygen is an issue. This is my 3rd dosing. After 1st two I needed transfusions. Please does it get better?Getting dressed feels like a Herculean task.
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Siri, yes, for some of us it does get better. But not everyone can tolerate Ibrance, and if you are having that much difficulty on 75 mg., I'm going to venture a strong opinion (keeping in mind that I'm not a doctor and don't know you), that it may not be the right drug for you. As you probably know, many women have done very well on either Letrozole or Faslodex for many years prior to Ibrance recently coming on the scene, and if I was in your situation, I would seriously ask your onc about dropping it, and/or getting a second opinion -- preferably from an onc who has been involved with the trials and has a lot of experience with Ibrance.
Zillsnot, good to see you, although sorry to hear you're having difficulty with Arimidex. You probably know this, but if the SEs you're experiencing are from the Arimidex, sometimes something as simple as switching to a different generic brand (different factory source) or to the name brand can help because it's the fillers that vary and sometimes women react to one, but do fine with an alternate brand.
Rose, sorry about the foot neuropathy and knee pain, but wonderful news about those chest wall tumors disappearing! Hopefully, you can find something to address the neuropathy and knee pain. Have you tried the often-recommended stuff -- inflammation fighters like curcumin? I'm a big fan of it and another newer product someone here recommended called Inflamma-Less by Irwin Naturals. Both have helped me with med-induced pain enough to suggest them to others.
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Siri1, Have you been tested for anemia? I think there are several different types of anemia, so it is important to have the right lab tests done to dx. My mo dx'd my anemia when my hematocrit dropped to 10. RBC and and fatigue got better after tx for anemia. 2 transfusions in 2 months sounds pretty rough. What drug is paired with your Ibrance? As Deanna said, Faslodex or an AI drug (Femera, Arimidex, etc.) can be very effective by themselves. I do think most of the se's get better with time, but fatigue is still an issue. Hope you feel better soon, with or without Ibrance.
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I'm on faslodex and zometa and Ibrance . I'm extremely anemic, but didn't know there are different types. My tm were going up before ibrance from 70's to 101. 1st cycle of ibrance sent them spiking another 50 pts. Now tm are down by 20 pts. Feel like crap, but so confused about what to do
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Hi Zillsnot4me,
I am getting IV tomorrow with Xgeva for 1st time. Just started with Ibrance & Letrozole 5 days ago. Wondered if there were side effects?
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Hey steelrose, hurrah for Ibrance getting the nasties out and launched out of space! I am on 1st leg of Ibrance and Letrozle (5th day) and go in for Xgeva IV tomorrow. I am reading a book that has made me laugh so hard, I can't imagine anything bad happening in my world. It's John Cleese's (of Monty Python fame) biography, "So, anyway." If the Ibrance and Letrozole can't do the job, then that book certainly will!
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jobur, I like the Ratso ref. Something dramatic to look forward to...aiyiyi.
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Lauren,
I have not heard of Xgeva being administered via IV and believe you will be getting an injection for that instead. Pretty fast and easy. I have not had Xgeva myself, but have been getting Prolia for a several years which is the same drug, just administered in a smaller dose and less frequently. It has always been a sub-cutaneous injection. (Relatively) short, small needle.
Others posting elsewhere on these forums have described the administration of Xgeva as injection, also. I do hope so as that should be much easier on you.
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Lauren and Goodbye Girl - my Xgeva is a shot in the arm (sub cutaneous). I don't believe it's administered via IV, but other drugs are. Siri - I required a transfusion after round 1 of fas + Ibrance #125, that did the trick at keeping my blood numbers up. I hope yours improve soon. I start round 5 on Thursday. Hi Jobur - hope you are doing well. What round are you on now?
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Hi all, I just finished my 1st cycle of Ibrance (in combination with Letrozole) and wound up in the hospital all last week with a neutropenic fever and neutrophil count/ANC of .26! It was scary and disruptive, to say the least, especially since I was doing great on the Letrozole alone.
My doctor wants to wait until my counts stabilize and then try the Ibrance again on the lowest dose (75 mg). I'm weighing whether I want to continue on it. I'd love to take advantage of what I know is a powerful and amazing new drug, but I really don't want to live in fear of getting another infection...especially since the amount of time on Ibrance is indefinite, versus the contained few months of IV chemo.
Would love to hear how others have done with the drug. If anyone had a tough time on the standard dose, did lowering the dose help keep your counts up better? And what immunity boosting supplements/treatments have worked best for folks?
Thank you for sharing your collective wisdom on these discussion boards!
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Aks- Sorry to read Ibrance has been hard on you. Is this your first line treatment? Sometimes we do better if we have not had any previous treatments for a longer period of time. It is great if you can fill out some history in your signature line to help with information. I was started at 125 and after 5 cycles was lowered to 100. I have completed one cycle on 100 and just started cycle 7. I had quite a few years between stage 2 and 4- Scans last month were good. My SE are tender scalp and a little bit of nose drip and fatigue but that's expected. Sure hope you feel better soon.
Carol
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Hi ladies. Sorry I've been so out of touch. I just got out of the hospital. Ibrance is finally showing signs of working. Two tumor markers down and one up. And stable liver MRI. Finally found a drug that seems to be working and my body isn't tolerating it.
Had a spontaneous bleed in my gums that took me to the ER and they admitted me to the onco ward. Platelets dropped rapidly in a 24 hour period. Went from 67 to 48 to 37 and hemoglobin dropped rapidly to 7.2. I was told that anything below 7 becomes an emergency.
Two bags of blood and abag of platelets transfused and platlets went to 91 and hemoglobin went to 10.3.
Transfusion was Thursday night and I left the hospital on Friday. Blood draw today shows platelets at 37 again.
This all happened in my off week. I was due to start round 3 yesterday. But dr says no way.
I'm so scared he's going to take me off this med. he talked about dropping me from 125 to 100. But I can't take anything with platlets this low.
Blood draw again on Thursday. I'm scared of internal bleeding at this point. And I'm questioning why he didn't admit me to the hospital again.
Anyone have this happen?
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Sony- what cycle are you on?
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Hello to all you brave smart women. I have been lurking for awhile and just now joining in to the discussions with a few questions. I was diagnosed with meds to my left lung 25 years after my original Breast cancer. My Dr. says I'm lucky because it's a very slow growing cancer and there are lots of ways to treat it. None the less, it was certainly a shock and has hit me like a ton of bricks. My mind is a jumble. I am feeling very hopeful because I have had a good response to the Ibrance and letrezole. I am experiencing SE's such as fatigue, very dry throat and nasal and sinus pressure, mouth sores, etc, I am on my 4th rd and my PET scan 2 weeks ago showed tumor reduction as well as lymph nodes disappearing. My MO has said I could reduce the Ibrance from 125mg to 100 mg to reduce the side effects. He also said I could stop the Ibrance and just take the letrozole and monitor the cancer and go back on the Ibrance if it starts to grow again. FWITW, I have tolerated the drugs fairly well as far as blood counts and no liver problems.
So, my questions are, 1. How much improvement has anyone experienced in side effects when reducing the dosage? Has anyone else had similar good results with this combo and did you just start taking the letrozole only? Has anyone had tumor reduction just on the letrozole?
I know these are good problems to have but I just can't decide what to do. Should I continue the dose at 125mg and hope to get to NED or improve my quality of life with a dose reduction or letrazole only. Thanks so much for any advice you may have.
Faith (in the future)
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Aks1022 and Faith840-
We want to welcome you both to our community here at BCO! We hope you find the support and advice you're looking for here, these forums are full of wonderful, knowledgeable members who've been where you are now!
We wish you both luck with your treatment, and look forward to seeing you on the boards!
The Mods
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Today I started Ibrance and Femara with fear and trepidation. I am stage four MBC after 16 yrs cancer free. Two years ago May 2014 a tumor was discovered in my lung with mediastinum involvement. I first went on femara for about 10 months - cancer continued to spread so was switched to Aromasin. That too failed so with a grim diagnosis of six months I went on Taxol. - with that failing as well after about three months. I then went on Halaven and tolerated that well and cancer was stable. I then chose a four week break to travel and celebrate some family milestones. Upon returning the cancer had spread a tiny bit and this time my trachea and esophagus was involved so radiation was the next step to my esophagus resulting in terrible throat pain, and inability to swallow or eat. Long story short much weight loss larer and lots of weakness and fatigue I am starting Ibrance and worried about going in to this already beaten down Thoughts and or words of encouragement
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Hi Carol,
Thanks so much for sharing your experience on Ibrance. It's really helpful to hear that dose reductions help with side effects. I figured out how to make my dx and treatment history public, so that should be visible now.
-AKS
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Hi Faith! I am sorry you have to be here, especially after all those years. ILC is so frigging sneaky. I had an 18 year remission for it to come back in my bones but not in my breast.
I have responded positively with Ibrance/letrozole and just started my 7th cycle- I also was on letrozole back when I was first diagnosed as well. There was a little confusion when I was diagnosed in October because my bone biopsy said I was triple neg. I was er/pr with original bc. I did go for a second opinion (Dana Farber) where I decided to have them take over my case. I was told that when a bone biopsy is done that they have to decalcify the bone and it is possible that you loose the positive status. In which, it was true for me.
I was started at 125 and did really well. At the end of my 5th cycle my numbers were borderline and I caught a terrible virus that threw me for a loop. MO lowered me to 100 and I have completed one cycle of the 100mg, and I am into one week of the the next cycle. I have appt this Friday so I will how my numbers are. I see a little difference between the 125 and 100 but only at end of cycle- I recovered from fatigue a tad bit better this time.
I am one of the gals here that always preaches the second opinion to get to a breast care cancer facility like Dana Farber etc because of my experience. If I had stuck with my original MO I would be in treatment for triple neg BC which is the big guns and I didn't need to do that yet. So I would get a second opinion before I would drop the Ibrance.
They also said to me that it is slow growing.. we have that on our side.
Carol
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Hi aks, cml and Faith and to all others,
Even though each person is different, we are own researchers in finding similar ailments or recourses for our ailments and drug take. It's a good interaction. I just finished week one of Ibrance/Letrozole (nothing except numbing in my left forefinger). Had 1st Xgeva injection yesterday (and, yes, it was not an IV--now I know! LOL).
cmlbrower, sorry to hear you are meeting up with probs again, however, as time passes, the meds and tech do get better and better! Keep spirits high with good supporters and plenty of laughter and all will follow. We are following you.
Faith, I, like you, am following Ibrance/Letrozole (too early to tell yet what lurks). Good to know someone is steady on with these meds. Keep the fight going forward.
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aks,
Are you a smaller weight woman? I wonder if weight has to do with the amount of Ibrance given. I'm on 125mg and weigh 116. Also, I've not had any chemo for BC and no rads administered except 28 years ago for a head tumor (nothing to the body). All sorts of things begin to factor in with these newbie drugs...
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Thanks lovemates for your reply. I think I've decided to drop down to the 100 mg of Ibrance and not just rely on the letrozole. I have read that others have a good response on the lower dose also and I'm not comfortable just relying on the letrozole yet. I would like to get to NED before doing that. I have been having issues with shortness of breath and thought it was the Ibrance but I saw a Pulmonologist today and he says it's most likely to be the letrozole. I was not happy to hear that because I will probably be on that for a long time unless we find another effective hormonal pill. I'm glad to hear the fatigue gets a little better on the lower dose because that has also been a problem.
So for all those out there who are just starting this cocktail, I'm hear to tell it does work and the side effects are mostly manageable. Hang in there.
Lauren, thanks also for your reply, I do intend to keep the fight going. The Dr. Said I can live to be 90, I said I didn't need that long but he said ask me again when you are 89. For the record I'm already a very young 75.😉
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Kaption - what is going on with your lymph node? Hoping its nothing, but cancer can lurk in many places. Please let us know asap. Cmlbrower - welcome, sorry you are here. For what its worth I'm starting round #5 of #125 ibrance + fas on Thursday. I have mets to left lung and sternum, but PET in April showed clear lungs! (I'm still having pleural effusions). But the micronodule in my left lung disappeared thanks to ibrance. SE's are rough for many and easy for some. Fatigue is the biggie, I've had blood numbers drop, dripping eyes, bloody nose in first cycles, some diarrhea, and lost 5 lbs. And I (too) had a burned esophagus during rads 3 years ago (the technician accidently moved the machine) - so I understand how tender that area can be. I encourage you to try Ibrance; they come in #125, #100 and #75. Talk to your onc so you are on same page due to your throat issues and pre-existing fatigue. Ibrance + faslodex may be good too? From my UCLA onc, who was part of trials, those two can wipe out lung mets - pretty powerful at bone mets too. Sony - worried about you being in hospital. We are here for you.
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cmlbrower, I'm with lalady in thinking that Faslodex+Ibrance might have been a good choice for you, especially if Femara and Aromasin previously failed you. Faslodex also thwarts estrogen, but by an entirely different mechanism than the A/I's do.
Faith, no advice on your questions, since I'm still on 125 mg., but just wanted to say welcome to you, and the other new faces here. And I love your onc's attitude!
LaurenG, I also weigh 116 and seem to be doing fine on the 125 mg., although I do have to wait a few extra days (beyond Day 28) for my granulocytes to rebound above 1,000. I actually did read something in one of the earliest trial papers (I think) suggesting that weight might be an issue vis-a-vis dosage, but I never saw any followup mention of it, and my UCLA onc, who was also very involved in the trials, has more than once indicated a strong preference for keeping us on the highest dose we can tolerate without serious neutropenia or other issues.
Sonya, how very scary about your bleeding episode and hospitalization! If I was in your situation, I certainly would not be anxious to try Ibrance again -- at least not right away.
aks, so sorry about your need for hospitalization. No doubt Ibrance is a very powerful drug, and clearly not for everyone. But I'm also not sure about your comment on IV chemo being limited to a few months. That's true for early stage bc, when we are given doses high enough to hopefully prevent our bc from ever returning. But I think with mbc you will find that lower doses -- sometimes in oral form -- are often RX'd for as long as it's working and as long as we are tolerating it well -- not unlike Ibrance. Of course, it all depends on how much bc you have and where it is, but definitely something to ask your onc about before you jump into chemo. Deanna
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lalady, thanks for remembering. Saw my new NP on Monday (really like her). She said she didn't feel anything suspicious, but to keep watching it for any change. The bad news is my TM took another fairly big jump. Next PET should be in about 6 weeks, but maybe MO maymove it up
Other question, has anyone had rising glucose numbers, or am I just eating too many carbs?
On dosage, I've been on 125 almost a year. Counts get border line sometimes, but always bounce back. Fatigue is an issue, of course-but hasn't really kept me from doing anything I really want to. I'm average size-133 lbs.
So sorry to hear of those struggling with tolerance issues. Hope we each find that drug that gives us lots of quality time. Hugs to all.
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Kaption glad to hear NP doesn't think it's anything much. But I gotta ask, do you feel something there? If you do then you do, no?? If it's still there what did she say it is? If you do feel it, don't wanna scare you but maybe an MRI(no radiation) could be done sooner just to make sure, just thinking...
Dani is like 90Lbs and dosage of Ibrance does not seem to be an issue.
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Rose so sorry for the rash, is there something you could take for it? I know some ladies mentioned this in the past, look back or someone could chime in.
Zillsnot I've missed you. How are the kids? Glad you coming along.
Sonya depends maybe more on the hemoglobin about going to the Hospital. If that goes low then they panic.Hope you are holding your own. You've always showed so much support for me and all here, peek in soon k.
Cmlbrower Ibrance has a lot of promise, can't imagine your pain you had in swallowing. I had a biopsy done once in my soft palate and it was unbearable painful for days. We don't realize that literally every instant we are swallowing, very tough.
Faith you seem so happy with your decision. Lowering dose could for sure help you. Fingers crossed. I noticed that you are Her2+, so you are triple positive? ER+PR+Her2+?? My daughter is triple positive and she is on her 4th cycle of Ibrance/Letrozole, she also lowered her dose from 125 to 100 because her ANC count were being affected. But I can't find many ladies at all that are in the same situation. She has mets for awhile now, and has been on just about all tx. Doc wanted to give this a try, although it's unusual. Would love to hear from you. BTW, your doc knows his stuff!!
Lalady look how you are helping everyone out, I remember when you first started here, you were not so sure, and now you lending a hand, good for you.We definitely have to be owr own researches.
Deanna, Carol lovely ladies, the drama with Dani continues, don't ask. There was a mess up with her meds order, I am so mad, but just wanted already to check in. Let's just say I am composing a lonnnnng email to the Doctor, he could share with whomever he wants. The numbing is still on the face, a drop better. I did go to another thread that a good soul here, sent me to, and there are other ppl with the same issues. The facial MRI did not show a/t conclusive, so the next step is a Neuro guy, but we wanna give it a little time. I will check in again. Thanks so so much for caring.
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