Ibrance (Palbociclib)
Comments
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Joyner-thank you for posting the link. worthwhile reading.
Nbnotes- Ive only completed three cycles and do not have that. I do have left over paresthesias in my feet from the taxol and I do feel like they are a bit worse and nerves more sensitive with the Ibrance. I could only wear flip-flops by chaco for a full year during taxol and afterwards. not even tennis shoes. I wear very cushy cross trainers that I got at a running store by Olympus- kinda duck shoes, but, so comfortable for a long walk. Maybe you have rubbing-could consider smart wool socks.
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nbnotes - I would drop the dose to 100mg if you think that is an ibrance symptom. skin issues are an ibrance thing ... rashes, burning, blisters, sores. QOL has a direct effect on outcome because it determines how active you can and want to be.
Claudia - Cycle 25!?!? IMO you can do whatever you please.
Seriously, this is my thinking not as a doctor but as a thoughtful proactive patient. There are two groups of people on this treatment protocol ... responders and non responders. Those of us who make it past 24 cycles are responders. By that I mean that the cancer depends on the CDK4/6 cycles and ibrance interferes with it. Since ibrance is working, the cancer is pretty dormant. Taking a month off at around the 24th cycle is very different from taking a break in the 6th or even 9th month when ibrance is actively driving back the cancer.
By the same logic I also feel that a lower dose would be appropriate for long term responders. That's another option you have ... lower the dose long term so you feel better all the time and not just for the vacation.
Personally, I stop taking it when I feel I need to. So far I have only taken 3 two week (one extra week) breaks over 22 cycles. I've taken them because of travel or because I noticed my bloodwork was low. I have also lowered my dose to 100mg so I don't have this constant feeling that I want to get off of this crap.
However, I am about to take a 5 week trip and I can't be bothered to get through all the hoops required to get the next bottle before I leave. My last pill of cycle 22 will be September 30 and I won't restart until November.
I don't discuss it with my onc because I've read the same trial results that she has. In truth, I have read them and she has not. And when I do discuss it with her, she doesn't always entirely agree but her arguments have no basis in data . ... there is no significant trial data on patients after 24 months. At this point, they are shooting from the hip and, in general, doctor's wildly underestimate the effect of the side effects on both QOL and outcomes.
After 25 cycles of stable on this treatment a month break is completely reasonable. If it worries you hedge your bets and make it 3 weeks. I would pay way more attention to your worries (instinct) than anything else. More importantly I would seriously discuss a lower dose with your doctor if your side effects are significant. You should NOT feel like you need to be off this stuff for a month to have an active vacation. You should be active all the time. After 25 cycles ... it's a lifestyle.
>Z<
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Claudia,
Doctors don't "get" side effects. I've never had one that did. I can't give you the explanation Z gave you but I would say tell MO the same way you told us here. He thinks you were asking for a break. His idea of a break is one week. Tell him to enjoy your trip, you need one month. He needs to explain why that would be too much. He won't be able to. I've been on 75 mg (like you) for 18 months now. I tell my MO when I'm taking a break. That was only one time for my son's wedding. It's usually him telling me to take a break and I don't want to. I don't have much fatigue from the 75 mg. like you do.
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Jaycee, thank you for your input. I really appreciate it!
Z, I am already at 75mg, so can't go lower. I am active, especially after this week of cleaning up after Irma! I plan on staying active, though , some days between pain and fatigue, it can be a challenge! I think part of why I am so worried is I am at 25 cycles. So I fear that any day now, I will see progression. Horseback riding and camping require a lot of physicality. So I want to feel in top form so I can enjoy every minute! This trip is something that we have wanted to do for10 years, but something always comes up to stop us. I am determined this year to go. Thanks for all your input, I believe I do deserve a break!
Hugs and prayers
Claudia
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Bighome - you can go lower from 75mg by changing the schedule. There are women on 75mg 2 weeks on, one week off. I've heard of 1 week on 1 week off, but my understanding is you want the time on to be somewhat longer than the time off the drug. If you want to tweak the dosing schedule, I will search for the discussion I had with a research nurse on dosing schedule strategies, she got it from one of the research pharmacists on the ibrance trial.
I am pretty sure my pain and fatigue are from the letrozol but ... taking a whole month off soon so we'll find out!
>Z<
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Claudia, I had to take a break from Ibrance so that I could have kidney surgery. From what I can tell from tests and scans since that break, I did not suffer a setback during the Ibrance-free period. It sounds like you will continue to take Femera and just stop the Ibrance during the break, right? If that is the case, then Femera will continue to do its job, so it is not as if you will be treatment-free. As Janet already suggested, you can ask your mo why he feels that a four week break is unwise. Listen to him and then make your decision armed with that added piece of information. The decision is really yours to make. If your MO's reasons are not convincing, and you think that you will have a more enjoyable vacation if you temporarily stop Ibrance, I vote to go for it.
Hugs and prayers, Lynne
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"The decision is really yours to make."
Thank you Lynne. That is the crux of it. That statement should be posted on a sign in every oncologist office.
>Z<
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Hi 50sgirl, cive and intoLight, sorry I haven't checked in for a few days so I didn't see your replies until now. Thanks very much for answering my questions and Lynne, especially for the reassurance about liver mets because when I read that the liver mets arrived after extensive bone mets diagnosed de novo Stage IV my first thought was that our first diagnoses match up. I've seen my bone scan and the tumours are in every bone from skull to femur, with several in a lot of my bones and I've been told I have a heavy load of ca in my bones. My TM went from 926 in February down to 390 in May but suddenly went up to 520 in June. A bone scan and CT, I have been told, don't reveal any progression but I must admit to being, let's say, very interested! to know what my TM is each blood test. It's hovered around 500 since June. I'm not the fearful type or a worrier but I guess it's always in the back of our minds so I'm very grateful for the way you phrased your reply, Lynne. I'm on a trial of Ibrance and Letrozole being held in Australia so I'm being monitored very closely, which is also reassuring. Thanks very much to the three of you for taking the time to reply.
Lillymillie, I take a sleeping tablet every night and I'm on Ibrance and Femara. I've never been a very good sleeper but despite that I didn't want to start on sleeping tabs, however my oncologist insisted that I should when she saw how exhausted I was at the beginning. It does help relax me and, even though I still wake at the usual 1am, 3am 5am time slots, I can usually put myself back to sleep by concentrating on my breathing. I find that helps a lot.....I focus completely and utterly on the in breath, counting to 4 with each breath....hold for 2....then count to 6 with each out breath. Really, REALLY focus on the entire breath without allowing your attention to wander and, with practice, it does work. It's also good for relaxation during the day when you get the chance. I also had a laugh at your friend who suggested a 5km run!! With the same mets as you, I know how difficult it is just walking sometimes!! This is why we all need each other to talk to.
Hugs to all and thanks again
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I just finished my first month of Ibrance and Femara. My WBC's are now 2.2 and my platelets are 118. I am tired and a little achy and have hot flashes and sweats daily. My appetite has changed a little but not too much to notice on the scales. I did notice I was nauseated a few days early on in the treatment but I think it was all in my head. This better work! I don't mind the side effects as long as it's doing the job. My last PET showed my T8 lesion (spine) and then something "suspicious of metastatic cancer on the right lobe of my liver." I hate cancer! I'm only 42 and I did everything they asked the first time around: surgery, chemo, radiation, and tamoxiphen. Just so frustrating! Getting a second opinion hopefully within the month at MD Anderson since I live in Houston.
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Good morning, Bsheldonrn, and welcome. We all surely understand your frustration, and likely, your anger. If you must be here, this is a good place to be.
Leapfrog, your breathing technique works for me, too. It is a better/improved variation on something I have used for years. Thank you! And your clematis(?) is gorgeous! What variety?
Z, thanks as always for your knowledgeable and thoughtful insights. And good luck this week-
xox to all.
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welcome bsheldorn - not all the side effects you get in the first 3 months persists ... the experience evolves. exercise is the best way to minimize the side effects ... gets the metabolites through and out of your system, or so i hypothesize. in any case it works. whatever exercise you can do helps.
a small amount of something intensive (15 minute jog) can have a significant effect but is not necessary if you are not up to it. a 20 minute walk gets you a lot of benefit.
i am also doing very well with sauna's. same principle just more lying around.
>Z<
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Nbnotes-I have had what you describe on your feet-reddening, blisters, and bruises. I assume it's from the Ibrance. Like you, I have to be careful about my shoes-it seems to happen if I take a long walk wearing skechers instead of shoes with more support. I find massaging them and putting on lotion after I've been on them for a while helps. So you are not alone in this side effect.
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I started my second round of Ibrance on Wed after two weeks of for low counts. I am experiencing a new side effect that is making me crazy. Dragon hands, I call them. The skin on my hands and feet are so dry theyhave gotten almost like a rough layer no matter how much lotion I put on. Is this a normal SE? Maybe from Faslodex because it's inhibiting hormones?
Bsheldorn, I'm from Houston and 42 as well! Sounds like we are on the same treatment time frame. Sad you are here but glad to meet you!
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.Txgatata - sorry to hear about your new side effect but I'm glad your counts got back up enough to start your 2nd round of Ibrance. I've been using lots of Udderly Smooth cream and almond oil with Frankincense essential oil on my feet - the latter to help with the neuropathy I've had since taxol chemo in 2015. So far they are ok but a bit dryer. My hands typically get very dry in winter months. When I did chemo 2 years ago I used a lot of cream and put cotton gloves on every night at at bedtime and that helped a lot.
I got my blood tested today after a great getaway trip last week and my counts also went back up so I'll start cycle 2 tomorrow but at 100 mg dose.
Z - Glad to hear your comment about exercise being helpful. That's what I'm trying to do, walk each morning and take a few weekly exercise classes in things that interest me like Quigong and Pilates. I really want to get physically stronger though this may seem to be a strange time to start.0 -
Liwi - It's not really about getting stronger. I am much much weaker than I was before I started treatment due to the effects of the treatment. My exercise regime is about the same or better in terms of length and effort but it doesn't have the same effect. The goal to manage side effects and to improve your health and outcomes. Oddly this may or may not involve getting stronger given the meds we're on. To keep going, you have to have your eye on a different prize ...QOL and outcomes. Whatever you do, whatever you can do, has a significant effect. It may be much less than you could do previously.
>Z<
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Good morning...
Txgatata....My skin is very dry. In fact, when I saw my NP a couple of weeks ago, she commented on how dry my back was when she was listening to my heart. She said it is from the meds. I don't help matters because I love to take long hot baths, rather than a quick shower....lotion, lotion, lotion.
Liwi....Good news that your counts are back up!
Z...Thanks for your input about exercise. I used to walk 2-3 miles a day. I haven't done that in a long time and I know how important it is. I hope to get back to it since the weather will be getting cooler. I'm hoping at this point I can get through 1/4 mile to start out. I have pushed myself in getting out more, rather than being a slug on the sofa....even that has helped tremendously with my mental worrying about this disease and the fatigue. And, I've noticed I have less pain. I try to do a little "something" each day...even if it's walking in place for 10 minutes.
Wishing all a good day!
Hope
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I'm sorry, but I can't get Claudia's issue with her MO out of my head, maybe because I have the same issue. What if Claudia had said to her MO what she wrote here:
"Horseback riding and camping require a lot of physicality. So I want to feel in top form so I can enjoy every minute! This trip is something that we have wanted to do for 10 years, but something always comes up to stop us. I am determined this year to go. "
That should easily convince her MO she should have the month off that she wants. She is verbal and incredibly articulate. I like to think I am, too. But in the small exam room with my MO, I turn into a flustered, babbling pile of mush. (And then when I get home right after an appointment, I realize what I should have said or asked.) Does anyone else worry that any one of their doctors could dismiss them from their practice? Maybe it is just me because this has happened to me in the distant past. The experience has stayed with me and I live in fear of offending one of my doctors, especially my MO. I hope this doesn't sound too crazy.
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Janet...I write down questions I want to ask my docs before I see them. Like you, I have in the past, gotten home and then kick myself for not asking questions I had on my mind to ask. I've never given it a thought about offending my doctors. I would think they would want a person to express whatever was on their mind...and, if they dismiss a person for doing so, then shame on them. It is their problem, not the patient's.
Hope
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Thanks, Hope. I do lists, too. My MO is an eye-roller and the list always elicited one. I don't do lists with him anymore but just try to remember what to ask. I know he is the best MO scientifically in my town and I want to keep him. His bedside manner leaves a lot to be desired and I just have to deal with that. Last time I saw him, as he was headed out the door, I mentioned our new puppy. Stopped him in his fleeing tracks. He and his wife had just gotten a new puppy recently and we talked dogs for five minutes. That is probably more time than I have ever talked to him about non-medical issues before. I think he is a very nice person when he is not racing around being a doctor.
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I find I have to make a list also because I just plain forget everything when I am in the office. My DH doesn't remember either. But I am thankful my MO doesn't mind them and always asks if there is anything else before she leaves. Communication with your MO is so important and I feel like it helps in my quality of life. You all help me because I would have never thought to ask for time off for a trip. I am heading out for just 2 weeks. The second week is my off week and my plan was to just tough it out because in the past I just did it. My MO told me I was ok to start late if I struggle to get my meds when I get back, but I never thought to ask if I can finish a cycle early. I am on cycle 17.
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Janet- Definitely write down your questions. Be nice and friendly- (he related to your puppy because it was a nice connection with you instead of just your cancer) Start with your most important or worried about issue first. Many people wait until the doctor is at the door to blurt out the issue that really scares them - basically when the visit is over- and then the doctor gives an annoyed short shrift answer. Use your active voice, try not to pause right in the middle of your thought or they will probably interrupt you. Take notes re the answers. I put my list on my phone in the notes section. Your doctor sounds less available than I would like, he is probably much too busy. It sounds like having a distant/unapproachable genius doctor is mostly not what you need. When you need a genius-get a consult. Get your needs met- if he has a PA or NP or PharmD maybe one of them is someone you can relate to.
My doctor is warm, friendly and available at my appointments. She also has email which is answered in one day for sure. I can also make an phone appointment to talk to her if I want to. The oncologists work closely with PharmDs who watch the lab, calculate and prepare the chemo and call to remind about lab or answer questions about side effects, drug interactions etc and they order the medications (including vacation overrides if needed). The more that the PharmDs do, the more available the MOs can be for the really sick and specialized needs. I am at Kaiser and do not need to worry about getting anything pre approved-if my doctor orders it-it happens. This is what you deserve and I hope that you get it.
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Thanks, IntoLight. I am on cycle 18, just ahead of you.
Nkb, I have a very good relationship with my onc nurse. I ask her all the important stuff. MO also has a really good PharmD but she isn't around that much. My MO doesn't like electronic anything. Forget email. He doesn't even like the patient portal where I get a lot of results. He thinks he should give all results so he can answer questions. Ironic. I have Medicare and a very good supplement so I get everything covered. I just don't live in the Bay Area like you. My son and his wife live in San Jose so maybe I could move in with them, NOT. Thanks for your thoughts.
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thanks for advice on sleeping tablets. I will speak to my onc next time I see him. I did change taking my ibrance to lunch time and have slept better. Yes leapfrog I did try concentrating on my breathe and it did help. I did yoga classes regularly at one time and remember this. Got out of the habit after my reconstruction surgery as I actually opened up with too much movement (but that's a whole other story!) I did try increase my walking and tried a little cycle with actually exhausted me. My thighs felt like they were burning afterwards. Freaked me out as I have mets in my femur. Just seem to have increased pain this cycle 6. Staying active though normally helps my side effects which are usually mild.
Claudia cycle 26 wow! I am usually very assertive but for some reason my onc reduces me to a nervous wreck. Nothing stays in my head. Maybe a hangover from the difficult conversation we had to have about my incurable cancer!! we have a good relationship but I find it easier to make a list that I can go through.
Great to see cycle 17 and 18 in print. I do hope I will be as lucky
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hi everyone, I don't post a lot but I do read a lot! I wanted to offer my oncologists perspective on a short break from ibrance. I'm about to start cycle five tomorrow and leave on a major trip to Asia in three weeks. My blood counts take a beating on ibrance (neutrophils at 1.1 today and I'm on the 100 mg dose) so my doctor recommended that I take two weeks of this cycle and then a three week break while travelling. It is rolling the dice a bit but he knows this trip is important to me and wanted me to have enough energy and immune system to enjoy it!
I think it's important to know our wishes and be able to ask for them as well
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PET scan tomorrow at 4. High protein diet for 24 hours. fasting for 6 hours prior, no exercising. There was something else ... what was it? I am sure it involves deprivation of some kind. The plan is to drive 2 hours on an empty stomach tomorrow and then not pass out during the IV. I just hope I can remember my own name by the time I get there.
On my last PET scan in August the sternum SUV was like .4 SUV higher than it had been in December. 2.3 vs 2.7. Doctors are like INCREASE!!!. If it makes a difference if I have jog a mile and have a glass of orange juice 6 hours before my scan, how can they claim to distinguish between 2.3 and 2.7 SUV?
This, my friends, is what is on my carb deprived scanxiety ridden mind this evening.
>Z<
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Z, you have totally got this! I pray for a comfortable day and no SUV! Sending you a hug.
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Good morning...
Z...You will be in my thoughts and prayers that your scan yields good results. I will have my very first scan from "head to toe" -- whatever that might be -- in a couple of weeks, I think. I am already stressing about it, but trying to stay positive. Not an easy task for this "nervous Nellie".
Hope
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Good Z....hope is well as much as it can be0
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Good luck Z....hope all goes as well as it can0
