Ibrance (Palbociclib)
Comments
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momall.. So sorry about all of Dani's troubles. You are an amazing mom. I hope to see you around on other threads.
Stefanie
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Zarovka, so sorry about the fainting. Getting an iv can be tough. From now on, they give you a bed. I think getting help with using some kind of mind-body approach is a great idea. I'll add myself to the list of those who have fainted. I fainted during someone else's blood test! So all these five years of bc stuff, and I never ever look at needles. Any news on your scans? I have already done some research on faslodex as my onc says that would be next, probably without Ibrance. Apparently it really can work well where an aromatase inhibitor has failed. She chooses that instead of A/A, partly because faslodex is not another aromatase inhibitor, and also she says faslodex has the fewest side effects.
Regarding why the oncologists don't discuss ILC vs. IDC.: Dlb, it seems like they zero in on practical actions that are applicable right now, today. They don't spend time on what ifs or speculation, and if it hasn't been proven in a prospective, double-blind trial of a zillion patients, then it is speculation. My onc is very pragmatic and often answers my questions with some version of, "We actually don't understand completely how this treatment works, but we see that it does work."
You too, Faith-- I'm sorry to hear of your scary fainting episode. I am glad Ibrance and letrozole gave you an improved scan. Hopefully your side effects will lessen as your body gets used to these drugs.
Maybe we should all carry smelling salts now and be proper Victorian ladies.
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Dancingdiva, it must be so hard to deal with all this while working and caring for young kids. I hope you are finding ways to get help with things.
Momallthetime, what can I say? You guys need a break. It doesn't matter which threads we're on, we're still all in this together. It's a small thing, but maybe it would help Dani feel a bit better about the possible bald patch to see the little clip-on hairpieces that are available. They should be able to make something comfortable in just the right size and color for her. Ask a good wig stylist.
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Mom, I will look you up too, we are all concerned in how Dani does. I hope the new Tx kicks in big time and she has a major turnaround. Yes Judy, when i was off of Ibrance for 2 months it seemed to still be doing the job. It took that long for my liver enzymes to regulate so think it was still hanging out in my body. Dee, I hope the lowered dose does the trick. I just lowered to 75 mg and so far no SE's to speak of. Mzmerz, V8 juice has a good jolt of potassium......Jeez, Walking Pneumonia! good thing she sent you over right away. Cathy, your poor Dad. We all know what it is like to "hurry up and wait".
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GG27. It is very normal for white blood cells to crash upon beginning ibrance. They will stabilize in a few months. When I had chemo in 2001, I one time had 0 neutrophils and I survived just fine. Your doc should give you neupogen shots to perk up your neutrophils. I started ibrance at 125 dose, lowered to 100, and then 75 with 2 weeks on and 2 weeks off. Recently, after a year, I had to go up to 100 with only one week off. Right now I'm getting neupogen shots again but am hoping that I will stabilize soon.
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Hi everyone, just as I always do, the ADD in me, I just jumped in and didn't introduce myself. I have been on ibrance and fulvestrant and Zometa for a year now. I live alone since my darling husband of 33 years left me in 2013. Never imagined I'd end up with MBC and be living by myself at 65. Life is weird, right? Ibrance so far for me is doing its job although the higher the dose the more fatigue I have. Zometa doesn't bother me and all fulvestrant does is make my face pour water constantly! It's a great look. My MBC metasticized to my lungs, not the best news. Anyone else have lung mets? Enjoy your Sunday! Val
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Hi Val, Sorry you have to be here but Welcome anyway! So sorry to hear about your progression. This disease bites and life is EXTREMELY weird for sure. Some just sail through life to the end with all the great things there is to enjoy, while others get way more than their share of strife. For me, Life has been pretty good the last 32 years or so. We have worked hard, struggled financially most of the time, had some great times and a good marriage. We raised 3 wonderful kids, have a beautiful home and were finally pretty much out of debt. Then WHAM! One year ago, Guess what? Stage IV right out of the box. Not to lungs but liver. Anyway, thankfully I have not had a (sorry to say) SOB husband up and leave me...That has got to be so hard and my heart goes out to you. I always hate to hear of someone going it alone...I am doing OK, hanging in there until the next scan. I am on the 75 mg Ibrance too only about a week in so still waiting to see how it's going. My WBC's also stabilized after a few rounds on the 125 mg so that wasn't the worry. I am also on Arimidex. Neither one right now has many SE's except maybe a bit of fatigue and suddenly slightly peeling fingers?? Anyway, I hope you meds work magic for a long time and that you have plenty of family and friends to lean on in your times of need! Hope to hear a lot from you.
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Valz, Ibrance is still relatively new, and to some degree there is still somewhat of a learning curve re. how to administer it, especially when a patient has unusually low counts. That said, unlike with chemo, I don't believe Neupogen or Neulasta are recommended to be given with Ibrance. I'm not an onc, and I know that sometimes our oncs have to get creative for our individual situations. But lowering counts has to do with the way Ibrance works and the recommended ways to counteract that include waiting extra time for counts to rebound or lowering the dose when they don't. Of course, your onc knows you best. But, in general, those meds are not given with Ibrance.
I'm so sorry about your personal situation. That stinks after 33 years. Shame on him! Deanna
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Mz - finding the pneumonia is a big win. untreated it would have undermined your other treatments. Good work pushing and showing up and getting answers.
Dancing - it is really the neutrophil count they worry about with this drug.
I take it between 3 and 6pm. There may be a benefit to having drugs like Ibrance peak in your system at night. Some studies have shown that cancer grows while you sleep. Since Ibrance inhibits cell growth, you would want peak concentrations in your plasma when cells are most active. Side effects like fatigue might be highest when the concentration of the drug is highest, but the fatigue may be a secondary effect of something like lowered wbc therefore unrelated to when you take the drug.
In any case, Ibrance reaches the highest concentration in your blood plasma between 6 and 12 hours. Ibrance takes a fairly long time to metabolize and peak in the blood plasma. That's my logic for taking it mid afternoon or at dinner.
Neither my doctor nor the pharmacy has told me to take it with meals, but there are studies that showed that Ibrance is more consistently absorbed when taken with food. See the food effect section in this link.
What really strikes me from the link is the normal variability in concentrations in the blood plasma of the drug. I think this is a major factor in why some people are fine at 125mg and some people have to drop down.
This is a rough weekend. The trailblazer who started this thread, Hope, has gone into hospice. I was just starting Ibrance as the drug failed Hope. I am deeply disheartened that Dani and MomATT have to set forth into the uncharted territory beyond the standard of care.
I would rather that we were all spared the emotional drain of switching treatments and trying the new stuff. I am increasingly hopeful about the options beyond the cliff, but I would not choose to live in that space. I have a deep gratitude to the trailblazers who train our doctors and chart the territory in the changing landscape of MBC.
Judy, Dee, Cathy, Carol, Faith and Mzmerz, cs0600, Kaption, Zills and everyone else on this thread and everyone lurking - may you make it through the bumps on Ibrance and settle in for the very long hall.
As an aside, the same line of research that showed that cancer grows while you sleep, shows that disrupted sleep patterns promote cancer. So there's an easy way to get an edge on cancer.
Get a good night sleep everyone.
Healing thoughts
>Z<
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Hi Ladies - reaching out from sunny Spain. On round #8 and I keep forgetting to take my Ibrance at our late tapas dinners. lol It's not exactly good with rose wine, but who cares? It's been a constant 100 to 102 degrees here, heading for Portugal and some breezes tomorrow. Valz - I am dealing with lung mets and this combo wiped out my nodule in left lung. Next PET is Aug 18th. See you all soon - salud~
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I had my CT/Bone scan on Tuesday of last week at a new hospital. All my records are at another hospital and they can't seem to send them over to the new hospital so they can do the comparison. I would understand if this were a low-margin industry. But it isn't. They should have the funds to be able to move paperwork from one hospital to the next in less than a week, IMO.
Day 2 of cycle 7. I woke up feeling crappy this morning. I did a couple long drives this weekend to get to hiking and pick my daughter up at camp. Driving seems to make me sick even the next day. My theory is that I just can't sit for any significant period of time without the toxins building up. I feel better but otherwise getting rest today. I have so much to do and I am just not doing it. I did a one hour hike/jog this morning but now I am gong to lie around with my cats and drink tea.
>Z<
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Oh Z.... that's ridiculous. They should be able to send records over in no time and do the comparison without issue. I'm so sorry about this. We shouldn't have to deal with matters such as this. Our situations are bad enough
Sending you a hug!0 -
Z, I'm sorry for the extra stress this is causing. I've been off of Ibrance a whole week today and feel really tired. I know Ibrance stays in my system longer and although I have read 6 days is the time frame, for me it's longer--That must be why my 14 days off is a must. I don't have energy to kill a fly. I didn't walk today either I just couldn't.
Hugs, Carol
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Carol, that's interesting about needing 14 days off. I'm still feeling a bit shaky & not great. It's been 10 days since my last ibrance and I just took my last antibiotic so that could be it too. I can't remember, are you on 100mg or 75? Hoping that this goes soon, ugh, so sick of doing nothing. cheers, dee
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Dee, I'm on 75 2 weeks on 2 off. I started Ibrance at the end of 10/2015. Made it on 125mg till March and have been lowered little by little to this. I hope it's the antibiotic for you. I have scns at the end of the month.
Hugs Carol
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Z, it's stupid that they can't send your records sooner, this whole system makes me so mad sometimes. There is so much waste and just plain laziness. I'm just finishing cycle 7 and feeling tired and grumpy. I've decided I'm not going to take the last two days of Ibrance this time. We leave for vacation on Friday with a two day drive to Florida and I want to start to get some energy back so I can pack and do the many other things necessary before we leave. I felt lousy when I started this cycle and then started to feel more energy a few days later. I did take Claritin this cycle so maybe that helps. Hope you get good results soon from your scan.
Dee, I'm sorry to hear it's taken so long to bounce back. How long will you be off Ibrance?
Carol, it's interesting to think about the Ibrance staying in your system longer than normal. I wonder if the longer we are on the drug the longer it takes to metabolize each cycle. In some ways, I feel better than the first few cycles and in others like fatigue, I don't.
Lalady, I hope your trip to Spain is everything and more that you hoped for. It sounds wonderful.
Have a good nights sleep everyone.
Faith (in the future
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Faith - I started cycle 7 on Saturday. I've been feeling pretty crappy just as I have to find the energy to get my family packed up to leave for Seattle on Wednesday. Then I realized today that I did not restart the claratin/loratadine when I started cycle 7 of ibrance. Popped a dose of loratadine a minute ago and added it to the pill organizer. Hopefully, I will have another good cycle like the last one. But at the moment I have this shakiness and fatigue that makes it really hard to pack up for a family vacation or even imagine a vacation.
Thank you lalady for showing us how it is done!
When I feel like this it is good to check in here and find everyone in the battle and figuring things out and making the tough decisions. Keep going ladies.
>Z<
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Faith, I'm going back on at 100 mg on the 9th of August, so I will have been off it for 19 days. Odd number but only because they don't want to start me again til my next round starts. Thanks Carol for reminding me of the dose. Labs are tomorrow, we'll see what my WBC is, hopefully it's bounced back, but I'm still shaky & feeling cruddy, so it will be interesting. It could still be the antibiotic. cheers, dee
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Yeah, the fatigue is hard to deal with. I think I will try to start scheduling a massage or some other kind of comfort during each cycle week three. To acknowledge that my body needs some extra care during that week and do something to take care of myself. I find if I pay attention to the cycle, I'm less likely to have unrealistic expectations. For example, I may plan to cook several meals during week one, but to microwave healthy pre-made dinners during week three.
Hello, Val, and welcome.
Z, that's why I always hand-carry records. Bozos.
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I'm new to the group and apologize for not figuring out how to enter my dx and treatments. I'm so impressed with the wealth of information and support that is here!
9 years after an initial stage II dx, I found it had metastasized to bones and ocular muscle. Started Ibrance and letrozole in Feb 2016. Also Xgeva. I had very few se, until the 4th round of Ibrance when I got some heartburn. In my 5th round, I ended up with so much inflammation in my duodenum and stomach that my duodenum was blocked and nothing could pass to my intestines. So far the only thought as to why this happened is a reaction to either the Ibrance or letrozole. Anyone else heard of this happening? It is not listed as a se in any literature as far as I know.
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Ainiowa I've had swelling in the same area. I will mention it to the mo this week. I've been off the Ibrance for a couple weeks since I was out of the country. I couldn't restart until I had labs.
I can't say I feel a lot better with this break but travel, coming back to heat/humidity and kids starting school, etc...
I think my AI is very constipating and have to be diligent about preventive measures-water, prunes, magnesium.
Thanks for mentioning it. I thought it was poor core muscles, fat, lymphedema but none of it seems right. Are you on an acid blocker? How did they treat you?
I have scans in Thursday so will know if it's progression.
Z hope you got your results.
Mom prayers for you and Dani.
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Zillsnot4me, I lost 15 lbs in a couple weeks and was throwing up because nothing could pass through my stomach. Before it got that bad, constipation was thought to be the problem, as well as acid. A GI scope found the blockage. I was dehydrated, admitted to the hospital for fluids and then started on TPN (nutrition through a PICC line). A later scope used a balloon to make an opening for liquids to pass, but it closed up after a day. Now I have a small stent which got me off the TPN and out of the hospital. I can only have a smooth liquid diet. The stent is supposed to pass as the inflammation goes away. I am on a steroid, protonix as an acid blocker and Singulair (allergy med). I don't know how we plan to monitor this.
It was great you got to get away for a while. Good luck with your scans! The humidity is awful!
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Z - rooting for your family trip to Seattle. I'm taking Claritan along with the no-fun meds, and its helping my runny eyes, etc. I planned for cruise during week off, week on is more tiring. I wore support knee highs for the flight - no swelling. I am also going to Vancouver in September for a one week wine country cruise with my beach club, hitting Seattle, Astoria, SF and Santa Barbara wineries. Pace yourself and you can do this. Going back to work after holiday, and on tired days I uber - so get work done in their car and its a write off. Anxious about PET on 18th - mainly because that machine gives me the willies. May take a xanax. Total weight loss since starting Ibrance in Jan and walking -12lbs. But no running with a damaged lung. Momall - sending love for you and Dani. Keep us posted. Dee rooting for you too! (()) Steph - always think kind thoughts for you and will post a picture soon. Prado was amazing, I walked 6 miles the next day in Toledo, now need a drink.
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Z, I hope the Claritin helps you feel better. I think it helped me. It's really tough trying to get ready for a vacation when you feel crappy. That's one of the reasons I decided to stop the Ibrance at day 19. I can't imagine it will hurt my long term treatment. Hope your vacation is good and that you've gotten your scan results back with good news.
I was also so sorry to hear that Hope, our trailblazer has gone into hospice. I hope our prayers will keep her stable and painfree for a long time.
Dee, hope your WBC are bouncing back and the 100 mg dose treats you better. I'll be interested to know how you get along with this dose.
Shetlandpony, I think you are doing a good job of managing the fatigue. I try to follow the same routine.
Zils, I also have trouble with constipation normally but I have started taking more probiotics and I believe that helps a lot.
Amy, I'm sorry you find yourself here and that you are having such trouble but this is a great place for getting info and support.
Lalady, your trip sounds wonderful, can't believe you walked six miles. I'm glad to hear I'm not the only one enjoying my small glass of wine once in a while. I know it may not be the best for us but in some ways, I don't think we should deny ourselves small pleasures. It's called "quality of life"
. Here's to a glass of Rose!Stephanie, Mom and Dani, you are all always in my prayers.
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hi all!
WBC came back at 1.2 which is better but the trial nurse says still not great, but considering it was a .67. So as long as it continues to go up or stay stable they will try me on 100mg 21/28 starting on the 9th. I will have labs again on the 8th just to make sure. cheers, dee
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hi everyone. Zarovka started a new thread in the stage 4 forums titled how many are we 2016. She started the thread last month. Z is attempting to count the number of metsters posting or lurking on our stage 4 forums. We are both thinking that people possibly missed the thread responding to threads that are only marked as their favorites. If you don't mind bumping over to that thread if you have not already it would be greatly appreciated.
Thanks so much
Mary Anne
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Z, I found that pretty interesting that the cells are more active while we are asleep. So the reasoning of taking the Ibrance later in the day makes perfect sense to me. I can't believe your providers could not send your files along. When i went for my 2nd opinion a few months ago they immediately sent my whole file in 24 hours. You are so great about your fitness I think your body was just telling you to take it easy and reserve for your trip. I hope you get some great info in Seattle and are also able to enjoy the sites and good weather.
Carol, my body takes awhile to bounce back from the cycles. When I was on cycle 5 last time and then quit it took 3 weeks to rebound both the enzymes and fatigue.
Lalady, I am glad you mentioned Claratin for the watering eyes as I get this very annoying SE. Sounds like your trip has been great with rose wine and sunsets. I'll bet you are looking forward to those breezes though after 102 degrees!
Welcome AinIowa! I have not experienced these SE's but sounds like you went through quite an ordeal. Hope everything resolves soon and you do very well on your Tx.
Zills, Sending good vibes and wishes for your scans on Thursday, always a week of anxiety.....hugs!
Shetland, You inspire me to get cooking and put away a freezer full of dishes to nuke on bad days!
Dee, so glad to hear the WBC has come up and you are back on the right track. Hope you continue to feel better everyday and get in some fun for the last weeks of summer.
Faith, Have a great trip!
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Good evening,
Has anyone ever experienced sudden fluid retention while on the Ibrance. I've had to be taken off of the Ibrance after 14 days the last couple rounds due to a low ANC (0.91).
I had hip surgery in June and was in hospital/rehab for 3 weeks, but the leg swelling didn't occur until after I returned home and restarted the Ibrance & Faslodex. I've checked the Pfizer site to see the SE's for Ibrance, but nothing about fluid retention is listed. I have also been prescribed Lasix now too.
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JazzyJune,
Is the fluid in the leg on which you had surgery? Either way, I think you should notify your doctor.
PS, I'm not on Ibrance any more, but check this site. Coincidentally I'm seeing my MO today, partly because I have swelling under my knee.
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Jazzy, I don't know your full hx, but I'm a little surprised your onc took you off Ibrance at the point he/she did with an anc just below 1000. Mine often dips to 800 or even 700 by Day 21 or shortly thereafter, but as long as it comes back up to at least 1000 before I start my next cycle, I'm good. Initially it didn't rebound to 1000+ by Day 28, so now I simply wait 4 or 5 days past Day 28 to restart.
As far as the swollen leg, definitely report it to your onc. Ibrance does tend to mess with our electrolytes, so water retention could be related. But I'm also wondering about lymphedema. Was the Lasix RX'd for the swelling, or were you already on that?
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