Ibrance (Palbociclib)
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MY WIFES MO HAS STARTED HER ON IBRANCE + FEMERA
SHE TAKES FEMERA IN MORNING AT 9AM BUT I UNDERSTSNAD THAT TAKING IBRANCE AT NIGHT POST DINNER HELPS WITH SIDE EFFECTS
MY DOUBTS--CAN SHE TAKE FEMERA IN MORNING AND IBRANCE POST DINNER? OR BOTH BE TAKEN TOGETHER?
PLZ HELP AND GUIDE US
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Talpha1, I too was losing an exorbitant amount of hair. I just started using Grande Hair professional strength hair rejuvenation stimulant and it appears to be working. I had a hair dresser friend dye my eyebrows back on - which made me feel of so much more human. I recently started using Grande Ladh MD Eyelash and brow formula and am starting to see new eyebrow growth. Have not tried it in my lashes yet but may try that as well.0
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many - there are many strategies for when to take Ibrance and letrozol and no clear winner. i believe most of the side effects of this regime come from the hormone suppression (letrozol) so if you are trying to reduce side effects, that is the drug you play with as far as the time you take it. letrozol is a nightmare for me. i take it in the evening with food on advice from the femara thread. the combined effect of a number of tweaks suggested on that forum have reduced my letrozol side effects to the point where i still have joint pain, but i can run. that is good group to hang out with.
A lot of people take ibrance with food. Studies have shown that you get a more even level of the drug in the blood plasma that way. If you take it without food, you can experience peaks in the plasma that could worsen side effects. I take in the mid-afternoon because I have read studies that show that cancer grows at night. Ibrance takes a surprisingly long time to peak in the blood (8-12 hours). This is just my approach, the only guidance you get from Pfizer is to take it at the same time each day. I take it between 2 and 5 in the hopes it will peak after midnight in my blood stream. This works because I eat a late lunch. The Take With Food issue is important so you have to balance these various issues with your eating schedule.
I don't take ibrance with the letrozol, but if that is what you choose to do, I don't think it will matter much. The drugs are absorbed very differently and well tested when taken together.
Best of luck to you and your wife. Please let us know how things go. The ladies on this thread no more about how to handle this treatment than most doctors. I feel very luck to have found this group. Bring us your questions.
>Z<
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Shetland - That damn scan did not respond to the mind storm of positive energy I was sending out. Rats. But, of course, you are well prepared with good options for this situation. Faslodex is a great drug on its own and will surely be unstoppable paired with a second drug. On the edge of my seat to hear what clinical trial options the docs are putting out there.
Hugs, healing vibes and extreme admiration for the how you are going about this. Get lots of rest between discussions and research and scheduling and all the nonsense that comes with progression. Exhausting but you gotta keep on it and get the best for yourself.
>Z<
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Shetland, Grrrrr...hate this stuff for those here!! I have heard good things about Faslodex alone and in combination with other meds. Trust your gut when you get done with your research. When it's my turn that one is on my short list. (Isn't it odd how we choose our drugs at some point?)
Many, I take Letrozole and Ibrance together at dinner and am on cycle 14. My idea was to sleep through the SEs. They diminish after the first few months and now it is some fatigue later in the cycle, some mouth sores which I try to prevent by avoiding spicy food that last week of the cycle. I'm using a new hair product and noticing less hair loss. If that continues I'll post the name of the stuff. When I''m out and can't get to food I'll ask for a glass of milk or cream to wash it down and coat the throat for the Ibrance. Drinking about 8 oz of water helps, too! Hope your wife has a great response to this combo!
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Shetland, I'm so sorry about your scan results but as your onc. said, two years is a good run. We will be following your treatment plan and praying you get an even longer run or better yet NED for a long time with no SE's.
I had my blood work yesterday and saw the MO today. He says everything looks ok even though my RBC, hemoglobin, etc are below normal range. He looks at different things and is not in any hurry to lower my dose of Ibrance since I guess if it's working don't mess with it. I should be happy about that and I am but some days it just gets hard to be upbeat. I think the letrozole is messing with my head again, I'm feeling very crabby. He thinks I'm doing well enough that I can just have blood work every month and see him every other month. My last PET scan and chest X-ray were in October and he's not anxious to do another until April, which is fine with me. I start rd #14 tomorrow and I'm having cataract surgery next Monday. He said okay to have it and to just skip the Ibrance that day. I will, gladly.
Many, welcome to you and some of the others who I forgot to mention earlier and have now forgotten your names. (Thanks to letrozole). We are sorry you had to find us us but, these are a great group of very smart, helpful people.
Faith (in the future)
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Shetland, Well, I suppose there is relief in knowing that you were right, in that it's what you thought or assumed was happening, and since all drugs have side effects, some known and some unknown, I do think it is helpful for our bodies to switch the drugs up every so often. If you take a PI3K inhibitor with the faslodex, you will be blasting the cells back to estrogen dependence, and will allow you to eventually cycle back to the AIs. Of course we are all headed down this path of resistance, so we really appreciate hearing what you decide to do next.
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How soon after starting did the side effects kick in? I'm experiencing a little nausea and fatigue already and it's only been 5 days. I take it with dinner. When should I expect the hair loss? 2nd month? Any info is greatly appreciated.
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Pinkbungadoo - I didn't start to notice my hair thinning until about 5 months in on this protocol. I'm finishing cycle 13 now and I continue to shed hair. I was hoping, as some have reported, that it would slow down and eventually stop, but it has remained steady for me. It is most noticeable on the days I wash my hair. Some days I wonder how I still have hair. At one point I was saving the hair in plastic baggies to get a true sense of how much I'm losing but that just got to be too much for me to handle emotionally. I decided it was best to just throw it out and move on with my day. It is what it is - only hair and only people who are very close to me (and my hair dresser) notice that it has thinned.
Keep in mind that not everyone experiences the hair thinning/loss. Maybe you won't have that SE
. Also - you may not experience lot of the side effect that others report. For example I don't get mouth sores at all but others do. SEs may come and go. You may experience some that others don't.
Cathy
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Thank you Cathy, what a random drug this is! Sometimes I feel lucky and guilty that I get to take this "magical" pill vs. the alternative. I go to my onc and see women who are receiving IV chemo and the guilt is overwhelming. I certainly hope Ibrance works for me the way it has worked for others. I wish just one morning I could wake up without the feeling of the cancer 'doom" and pushing through it.
Tara
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Oh, it does me such good to read your support here.
Well, Z, even if the scan didn't respond to the positive energy you were sending out, I did. I was really quite calm on scan day. You got it about the exhaustion brought on by this process of research, scheduling, and discussions. I had two solid days of driving and doctor appointments, and I was congratulating myself for hanging on until the end of those two days.
Iwrite, trust your gut is what the oncologists told me, too. I finally asked my onc what her gut said, and she said it tells her we need to use afinitor. Thankfully, my gut was saying the same thing, so that's a huge milestone in this decision-making process. So I am definitely down from 5+ choices to 2 choices: Faslodex with Afinitor, or Faslodex with a trial drug that addresses the same general pathway.
Faith, thank you for your prayers and good wishes. If you are having trouble getting upbeat, just try for calm. Maybe go visit a garden or some other place that is soothing to you. After working on all this decision-making, I am craving nature.
Cure-ious, it is true that it is good to know I can continue to trust my intuition and my tumor markers. Yes, I'll be switching to not one but two new drugs. That ought to do something!
Pink, you are new at this, and I think you will start to feel steadier. No guilt. We all share in each others success as well as disappointment.
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Pink - 3 months is a short time to be adjusting to a life changing event. Give yourself time to absorb it all and allow for those gloomy days. It's only normal to feel that way, especially so soon after your diagnosis. We all get in a funk from time to time but early on it may feel like you'll never get out of the funk. You will. As for the side effects - best not to be looking for them. If they are going to occur you'll deal with them as necessary. Like I said in my earlier post, some may come and go never to be seen again and some may stick around. You have no control over it. I had a period of 2 or 3 months starting last February where my eyes were tearing constantly. so bad that I got a rash on my face from the tears streaming down. I had to walk around with tissues all the time to dab my eyes. I went to the ophthalmologist and she told me to use eye drops for a couple of weeks. That did help and then eventually it just stopped as spontaneously as it had started. I thought I was going to have to deal with it for as long as I was on the protocol based on what others had reported but for me it just came and went. So it is hard to know what your personal experience will be with any of the side effects that are reported until you actually experience them yourself. We all respond differently to the treatment. It's kind of like perfume. The same perfume can smell different on each woman. maybe it smells the same on some and little nuanced or vastly different on others. It's chemistry.
Just keep reading the thread here. I would suggest that you read often because it is a very fast moving thread. I find that I cannot keep up with responding to everyone but I do read everyday. There is a wealth of information, knowledge, support, good humor, camaraderie, love, caring, empathy and sympathy to be found here. I don't know what I would do without this group. Everyone here is amazing.
Cathy
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Now let's think. In favor of the trial: If I do the trial drug, I save afinitor for later and can do aromasin + afinitor, effectively adding one more non-chemo treatment to my arsenal. Unless the two drugs are similar enough that it really wouldn't be worth it. TORC 1 vs TORC 1/2 inhibitor. Also, I think the trial will pay for some things and I do have co-pays.
In favor of afinitor: The trial is phase 2, while afinitor is a known quantity. It will take up to a month to start treatment if I choose the trial, whereas I could start Fas + Af in a week. On the trial I would get CT or MRI instead of PET/CT, unless I could add PET/CT outside the trial (but that would be more radiation).
Also, there are QOL considerations -- I would have to transfer from a place where I feel very comfortable to the trial center. The trial center is farther away. In the trial I would lose some privacy, flexibility and control. Trial would require finger-prick glucose monitoring for at least two months. Maybe a liver biopsy.
Both are excellent cancer centers. Side effects of the two drugs probably similar.
Ok, go!
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Yes, what AnimalCrackers said, Pink.
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Hmmm.
My 2 cents. How far away is the trial center? Will travel time suck up a lot of your life?
How are you feeling? Are you up for the constant drives and tests?
Would the trial allow you decent QOL?
Is the time lag prior to treatment a concern to you and your Onc?
If you feel good, aren't too stressed out, don't mind the drive and can keep decent QOL the trial would have some appeal.
Comfort is important too! If the trial criteria are really stressful, maybe not.
Trust your intuition I think. They are both good options.
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Shetland, I'm doing a trial for pi3k. I have had 4 treatments of gedatolisib. I have tolerated it pretty well so far. I have had mouth sores for the past week but it could be from the ibrance. I started both the same day so I don't know which causes what for me. I have very little fatigue so far but I think exercising is helping with that. I am tired the day of infusion and a little nauseous but nothing bad. I work the next day so it doesn't keep me from doing things. I wish you luck whatever you choose.
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Apg, I've been on Ibrance for 17 months, and seen no mouth sores- I know others get them with Ibrance, but I would tend to blame the gedatolisib. Did your MO mention what side effects you might have with the gedatolisib, and has anyone mentioned how well others are doing on the trial, or what other SEs might be cropping up to watch out for?
Shetland, did your MO give you any information about different SEs with these two drugs that would help make the decision any easier? Afinitor has sucky SEs but many have gotten good mileage out of it, and it appears there are things you can do that would help deal with them. With the trial, is it a certainty that you would get the newer mTOR inhibitor, or might you be in the placebo group? If placebo were possible, I would opt for Afinitor, that is too much effort to maybe just be getting faslodex alone...
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Shetland - I'm glad that you had 5 good options to choose from going forward - wow! While I hate that progression has slightly lifted its head, I'm glad that you now have a clear path forward to work toward your next NEAD period! Your signature line has always brought me great comfort hoping that if I ever go to Taxol it could be really effective!
Animal Crackers and Z - You both hit the nail on the head about scans and the stress they can bring. I'm with you on that.
I just began Ibrance #20. Just had PET/CT and radiologist report indicated I had no uptake in most areas, stable in a few areas and one "probable" bone progression. Onc disagreed with radiologist read and said it's not progression and that it can be difficult for radiologists to clearly determine bone progression sometimes.
My TM's had been trending down except for the one done right before the scan (of course!), so we'll see what the next TM's say. They're usually reliable for me, so hoping the high read was a one-timer. But, yikes, I thought scan reading was a little more definitive, but I guess not in some cases. Z - I know you've commented on margin of error on these tests. For today, I'm going to claim the margin of error is in my favor
Nonetheless, onc decided to swap out letrozole for tamoxifen to shake things up a bit at this point, since I've never been on tamoxifen. So I am now continuing on Ibrance + Faslodex + Tamoxifen. I've seen that at least one of the other CDK 4/6 inhibitors is being used with Tamoxifen, so combining with Tamoxifen could give some of us some additional anti-hormonal options.
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Shetland - I saw that you wondered about Faslodex shots with your dancing. I've had the Fas shots for the past few months, and I venture to say you would not be impacted in any huge way. My first two sets of injections were a bit of jabby pain afterward that lingered a day or two and did very infrequently go down my legs just a bit for a day or two. Nothing debilitating certainly. After that, they have just been a bit "jabby" mainly at the injection site -- nothing that I see that would force you to change your schedule. If anything, I'm thinking activity actually would be very helpful.
With what we know of you, they won't keep you down even a day!
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Shetland - I sent you a pm - rooting for you and your choices, trust your gut and pair faslodex for best results. Nice to have 2 good options. I have had 14 fas shots without SE, not much of a dancer, but no leg pain yet. Get your nurse to warm those shots up first and go s l o w l y into your bottom. For those of you looking for the 2017 $10 Pfizer copay link here it is. www.pfizercopayone.com Just renewed my card, but my insurance has covered all costs so far. Happy dance!
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Shetland - I PM'd you, but I will repeat some of it here. Faslodex and Affinitor is not a common combination, Afinitor is usually paired with exemestane. Your thinking should take into account that Faslodex and Afinitor is a somewhat experimental combination.
The TRINITI-I trial came up on another thread. They combine exemestane, afinitor and ribociclib, one of the second generation CDK 4/6 inhibitors. One strategy might be faslodex and trial drug, and hold afinitor and exemestane for the third line treatment (which is where it seems to be most often used.)
The truth is that I like all your options. I think you are in a good position. Which one? Go with your gut.
Is there any discussion of biopsying new growths?
>Z<
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Since some have expressed interest in post-Ibrance options, here is a list of some things I looked at. There were no other options that the oncologists recommended for me in my particular situation:
SANDPIPER taselisib (My F1 does not show the required PI3KCA mutation. Am going to find out if a new biopsy is possible.)
SOLAR alpelisib (Does not allow prior chemo.)
LEE011 with fulvestrant, LEE011 + BKM120 with fulvestrant and LEE011 + BYL719 with fulvestrant. (Stopped recruiting -- due to toxicity, I believe.)
TRINITI-1 ribociclib, everolimus and exemestane. (Looked seriously at this one but decided I wanted a bigger change than a different CDK 4/6 inhibitor and another aromatase inhibitor.)
Faslodex alone. (Want to address more than one pathway.)
A/A Aromasin + Afinitor aka exemestane and everolimus. (A good option but thought Faslodex would be better for a switch.)
Faslodex + Afinitor, an mTOR inhibitor aka fulvestrant and everolimus "Progression-free survival was more than doubled for patients with metastatic hormone receptor (HR)-positive, HER2-negative breast cancer resistant to aromatase inhibitor therapy by adding everolimus (Afinitor) to treatment with the endocrine therapeutic fulvestrant (Faslodex), according to data from the PrECOG 0102 phase II clinical trial presented at SABCS 2016."
Faslodex plus or minus a TORC 1/2 inhibitor trial drug. (Same general family as afinitor, but broader.)
I'm trying to choose between the last two.
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Shetland - Oh yeah ... there was a very promising faslodex and afinitor trial. You are so on top of things, I can't seem to do much but sit back and be impressed. If you get a link to the "Faslodex plus or minus a TORC 1/2 inhibitor trial", I'd like to file it for my future reference.
Thank you for that summary... it is of great use to all of us.
>Z<
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Cure-ious, yes, with the trial there is a 50% chance of not getting the trial drug. I confess that if that happened I would quit and go to Fas + Afinitor. Not very noble of me. It would delay starting afinitor. The oncologists say the side effects would be similar, and that the new dexamethasone mouth wash works well. Iwrite, regarding QOL, I look pale and tired right now from this process, and while I feel I can be brave about changing treatments and getting the shots and dealing with side effects, adding trial requirements to that feels like too much. Also I really feel comfortable at my current cancer center and I am used to the way everything works there. However, that is probably just the tiredness talking. I need to choose what seems most likely to work.
There are two points in favor of the trial: I would save A/A for a later option, effectively adding another treatment to my arsenal for the future. Also, the trial drug is broader than Afinitor, so maybe it would have a greater chance of working? (Apparently PI3K, mTOR, akt, TORC are all related. Afinitor is TORC 1 and the trial drug is TORC 1 and 2.) I wish I understood more. I haven't heard back from my oncs on these points. To most of my questions they say, " We don't know. We have no data."
But reading between the lines I think one onc was leaning toward this trial rather than TRINITI-1 for me, and she simply didn't think insurance would approve afinitor with Fas. (But it has.) The other onc finally told me her gut said we need to use afinitor (or, I presume, a similar drug). She thinks the recent report about Fas with Afinitor means it is a good option. She likes Fas for me. The overarching theme seems to be switch it up as much as possible, and use a dual treatment. My gut agrees. I just am having a hard time with the final choice between similar protocols.
Yes, Z, I am going to meet with an interventional radiologist to discuss whether a liver biopsy is possible and safe.
Moissy, I'll always have a special place in my heart for Taxol.
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Shetland, I have been following but not posting much. However, your situation has been on my mind and heart, and I just wanted to clarify a couple of things you may or may not have said -- so that I am sure I understand your choices. First, did you say somewhere (sorry, too lazy to go back and read everything) that the trial you're considering is a Phase II trial? If so, doesn't that mean that what they are testing are variable doses, to be sure they have the right dose level? Sorry, I may have that mixed up with some other trial option, but in general -- unless I had no other viable options -- I would be leery of a Phase II trial for that reason -- e.g. you could get a dose that's later deemed too much or too little.
Also... if this is Phase 3 and you don't get the actual med, wouldn't you get a placebo? In most cases, I believe that's how it's done, so that participants don't know for sure if they're getting the actual drug until the end of the trial. Of course, you can guess based on SEs or no SEs, but I think they try to avoid letting participants know, don't they?
Sorry if these are silly questions, but they keep rattling around in my head when thinking about your situation...
PS ~ I think I answered one of my questions here. https://www.nlm.nih.gov/services/ctphases.html
Looks like the dose is determined in Phase I.
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Deana, I have noticed that you have not been posting much...hope you are ok and just taking a little break. Your guidance here is invaluable.
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pink, animal crackers gave you good advice about side effects coming and going. As she said, read often, this thread does move very fast and its hard to keep up. So often, I want to post an answer and the thread has moved way beyond my comments.
However, Cathy, I did want to ask if you have tried biotin for your hair loss? I was really losing hair for many months but it has slowed or almost stopped and I believe it's now getting just a bit thicker or it may be my wishful thinking.
. I do take 10 mg. Of biotin every day. As for side effects coming and going, my mouth is always sore. Not actual sores, just a burning sensation most of the time and anything spicy is awful for me.Shetland it's no wonder you feel and look tired. Doing all the research on this stuff is exhausting both mentally and physically. It's feels to me as if you are leaning towards at least staying with your current cancer center even if your not sure which drugs you will take. I think it's very important to feel comfortable with your doctors. I'll pray that the next treatment treats you well and knocks the h--- out of this cancer.
Hugs, Faith (in the future)
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Those are very good questions, Deanna, and I have been wondering what influence Phase II ought to have on my decision. I'm interested in opinions on that from people here. They are testing fulvestrant only, fulvestrant plus daily trial drug, and fulvestrant plus weekly trial drug. After randomization, it is open label, so you know if you are getting the drug. The doctor may decide to adjust the dose because of side effects. If disease worsens, you may have the option of crossover treatment, i.e. getting the trial drug added. One of the doctors who did the Ibrance trial is doing this one.
Faith, if you want to post and the thread has moved on to another topic, I think you should post anyway and just say, "Regarding..." We want to hear what you have to say! Your perception is correct -- I want to stay at my current center and go on Faslodex + Afinitor. But I am afraid of taking the easy route if the trial drug has the potential to be more effective. Haha, I just read my last sentence. Afinitor is the easy way! But you know what I mean. That and the idea of having one more treatment available to me since I could do A/A later. I wish I could talk to a cell biologist who studies bc. Hmmm.
Everyone, I have been thinking that this is the Ibrance thread and I should not continue to take it too far off topic But it is also a support group of really awesome people for me, and I thank everyone for their indulgence. In a few days, I will have made a decision.
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Hi Shetland,
As you might have noticed there was one clinical trial comparing the dual mTOR inhibitor AZD2014 with Affinitor/Everolimus as monotherapy for renal cell cancer that was stopped early because the AZD2014 was (surprisingly) not as effective as Affinitor, https://clinicaltrials.gov/ct2/show/NCT01793636. Of course this may be just because of the type of cancer or that it was tested alone, so it doesn't mean AZD2014 in combination with Faslodex might not turn out to be great for breast cancer.However, if you do decide to stay with your current doc and go onto Affinitor/Faslodex combo, although you would be turning down future A/A therapy, there will be more known about the different next-gen mTOR inhibitors currently in development, which you could take at that time. Plus maybe the 3rd-gen drugs like RapaLink will be in clinical trials by then. Good luck with the deciding..
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Shetland - Thinking of you, as always.
If you do choose the biopsy, consider Function Testing as well as genetic testing. It's good to have a testing strategy before you biopsy. You have to know what you want to test fore before you do the biopsy. They need a certain amount of material and the samples need to be handled in specific ways for the tests. It takes gram (!!!) of material, so that can be an issue. It's also good to have a testing strategy that might shed light beyond the current treatment decision.
Circulating tumor cells are interesting. I am having it done myself to learn about it. However, I am not sure I would trust the test with a treatment decision, given what I know now. I'd be interested in what your exceptional team thinks of them.
I think you have two more or less equivalent options, when you lay out the pluses and minuses. The trial has the potential to be a better drug with fewer side effects but it may not be. And you may not get it. And the stress involved in participating in the trial is a significant health issue. Sleep, walk, talk with people. Spa day? Spa week? The answer will be clear to you in a short time ...
Your posts are clear-headed and grounded. For this reason I have great confidence you will choose the right path. However, I know it is a very hard time. Sending hugs and healing vibes ...
Still interested in the actual name of the trial you are considering or the NCI number or some way to look it up on clinicaltrials.gov ...
>Z<
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