Ibrance (Palbociclib)
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Faith, I did not get to feeling much better in the week off until almost the end of the week. Ibrance stays in your system and keeps on working. When I had to stop because of elevated liver enzymes it took a month for them to get back to normal. I am on100 mg right now but have to lower the dose again next week to 75 mg. This time around I just had a lot of nasal issues, sticky mucus and burning in my nasal area like bad allergies with a allegy like pressure headache that sometimes lasted all day. I have been off for two days and all that is clearing. But hey, if you are going to feel not great why not do it at the beach?
Hi Brody and welcome! I got mouth sores the first time around and just followed all the advice on the mouth rinse and a soft toothbrush. It cleared up after about a week and a half. How is the Wellbutrin working for you? I plan to ask about that next visit as I admit I could use a "boost". Working helps me a great deal as well although i was so relieved to finally get summer vacation to regroup and take care of the home front for awhile. I am enjoying it so much I am reconsidering applying for SSDI. You are definitely not alone. The women here are smart, compassionate and strong.
eelder, My hair was coming out every time I combed it out after a shower. It was quite alarming! I have pretty thick hair to begin with luckily and only I noticed, but I could tell it was much thinner. I stopped the Ibrance for around 4 months, restarted last month and so far no hair issues. Weird.....
Aurora, Best wishes on those scans. Two years is a long time so I am sure you are a bit anxious.....
Z, The claritin is OK with liver issues? I want to give it a try because of my nasal issues plus who can't use some help with the fatigue? Just have to watch what I put through my liver.
Carol, I get the burning sensations too which always sets my "neurotic" mind in motion. I am pretty impressed that you get out there almost ever day to walk 1-2 miles. I really need to get going more.
Welcome Dianarose! I am not sure if Ibrance actually "kills" the tumors but can shrink them to almost non-existent as well as settle down the SUV uptake.
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Carol, I am still a bit confused. If it stops the cells from dividing and growing what is making the existing tumor shrink
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Hi Artist - I wanted to let you know that I did read of a couple of women on another forum who had liver issues on Ibrance, so although it doesn't seem to be a common side effect, there are a few others who have experienced it. Good luck. I hope 75 reduces the problems for you.
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Diana- I don't know the answer but I am guessing that the letrzole starves the existing tumor and the new cells can't get a landing pad to attach to. Hope someone else chimes in
Carol
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Carol, That sounds pretty much like what I heard from my Onc. Starving it and not giving it a chance to attach,,,,Thanks Moissy! One day at a time....I, like everyone else, just hope for one that will carry me along for a good stretch.
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Sloan told us not to use flax seeds or soy, actually they did not want any supplements. Some doctors just don't know enough about it, so they just say no.
Carol good luck on your new schedule. Love your attitude, you do that, beat the S..t out of BC. We are all with you. And DF is a great fit, and they really seem to care, good for you. The rule is: if it does not bother you and it's not pushing into the brain, and it doesn't grow exponentially than they leave it be. That's what I know. They won't and don't like to do Rads in that area, if it's not extremely necessary. It just stays there.
The mets situtation in Dani's skull is more extreme, are being watched every 3 mos with MRI, most stayed stable for awhile, one is always acting up. She had Gamma done on it, but it keeps reappearing, so we'll see next wk also what the plan is for that.
Zar did you just have another scan? Did you know about the liver before? Was there ever a talk about biopsy of the liver? I am wondering if they will suggest a/t like that for Dani. I would like to know, but there is talk that biopsies could mess with the cells, I am not sure if it's true or just rumors. But what did you do? And is Ibr/Letr able to kick the liver tumors also? Or is chemo needed?
Faith hoping you could enjoy the outing just the same. Who knows, maybe it will be better this time around.
Erika I can't help with your question about the AST but Artist also has issues with liver enzymes being elevated.
GN everyone,
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Diana - Interesting question. Palbociclib stops cells from dividing. But cancer cells are supposed to be immortal, so if it is not killing them, how are the tumors shrinking? The best I can figure from a quick review of literature is that CDK4/6 kinases probably do more that facilitate cell dividing. They may also play a role in the processes that prevent cell death and make cancer cells immortal. For that reason, sometimes, when you inhibit them it kills the cells.
They are actively researching why palbociclib sometimes tips the cell towards apoptosis and sometimes it just stops cells from dividing and causes tumors to go dormant.
Another thing to consider is that hormone suppression alone kills cancer cells and causes tumors to shrink. Estrogen supposedly just initiates the growth cycle. So why does the absence of estrogen cause tumors to shrink rather than go dormant? For me that is an even bigger puzzle. My theory is that some cancer cells aren't really immortal. They just replicate faster than they die. If the stop replicating altogether, they slowly die off. But I haven't seen anything that really addresses this question. I am very interested if anyone understands this.
But, can palbociclib reduce tumor size? Yes. My tumors shrunk 50% by volume in 2 months on this regime. There are several women who have seen their tumors shrink a lot or disappear. It doesn't necessarily happen quickly, but if it is going to happen, it will probably happen in the first 6-8 months.
However it works, palbociclib is a reasonable strategy for reducing tumors based on the outcomes we have seen.
>Z<
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Mom - I've had liver mets from the beginning. They were biopsied and came out pretty much the same as the tumors in my breast and lymph. I've had three biopsies in total - liver, lymph and breast. Letrozol/Ibrance plus some alphalipoic acid IV's reduced tumor size in two months, a lot.
I've never had chemo. But it all depends on what cancer you have now. The cancer evolves and frequently becomes resistant to treatments. I don't appear to need chemo now. But it's on the list of options for the future should my cancer become resistant.
I have my 6 month scan in a couple of weeks.
Artist - I don't know anything about loratadine (claratin) and the liver. I am not babying my liver as it seems to be the least of my problems at the moment. However, I am sure that loratadine comes in a form that dissolves under the tongue because my kids take that. I think I've seen drops under the tongue. I recall that longtermsurvivor takes some drugs that way with the intent of avoiding the liver.
>Z<
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My patient navigator says she has some patients whose tumors nearly disappeared after being on this treatment. The studies show progression-free survival to be ON AVERAGE 22-24 months. There are people who have been on this treatment for 4-5 years (started in the trials) and are STILL on it. Some of the people stopped the treatment because of progression and some might have stopped due to not tolerating it well. The point is there is the potential to be on this for some time (yay) and compared to "regular" chemo this is SO MUCH BETTER. My oncologist told me I could be "on this treatment for years..." I loved the sound of that because I am tolerating it well and it buys me more and more time until they come out with new stuff. But even if they don't come out with new stuff if/when I need it, there are plenty of other lines of treatment available. Stanford called it "The Nine Lives of Hormone Positive, HER2- BC." Literally 9 lines of treatment (or thereabouts). I was reading that Eli Lilly and Novartis also have drugs coming out in the next couple of years that are similar to ibrance. Imagine! Even more options! And then there are the immunotherapy possibilities.... exciting times. Everyone responds to ibrance differently, but on a whole it's considered first line of treatment due to how good it is. Many seem to have success on it, but even if you don't, we've got other things.
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It is so awesome to see so many positive comments🤗 . Thanks for all the information everyone
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Question for those who have NOT had surgery yet. I was diagnosed Stage IV in early April. My first scan is next week. So, who knows if I am responding though I'm obviously hopeful I am. Anyways, I know I will be on this treatment until it stops working. Surgery was mentioned, but unlike other stages it seems like it's more "up in the air" as to when I have it. Is anyone else in this position? What have you been told? All I was told is that we'd get the cancer under control first and then make decisions. Makes total sense, but would love others' input as well in case they were told otherwise.
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eelder, I was Stage IV right off and I was told surgery was a moot point now. The horse is already out of the barn so to speak. There are different views on this though. Some think that reducing the tumor burden makes sense. Others think surgery may let more cancer cells unleash? Not sure how much research there is on this but plan to start looking around. The meds I have been on have shrunk the breast tumor and armpit nodes to non-palpitable. Right now I am OK with the no surgery decision. Keep up that optimistic outlook, I love it!
Z, thanks for reminding me about under the tongue. My liver despite the tumors and elevated liver enzymes is still functioning well. the enzymes should be subsiding as I am off my week of Ibrance and going to lower dose.
Mom, I think at least one biopsy is needed to check the status of each tumor in order to try and pinpoint the best Tx. I know, as above with my surgery comments, there is speculation as to whether this stirs up the cells. But the whole point of the meds are to kill all those cells everywhere, so I wonder if it matters if more "escape" into the system.
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Artist... thank you for your reply. I've been told "we don't really care what's in your breast anymore." Like you said, it's a moot point. Yet my oncologist seems to feel it still might make sense. Initially, when I was first diagnosed, I wanted a double mastectomy... get rid of them! They caused this problem, I want them gone. My onc was empathetic from an emotional standpoint but has convinced me doing this really won't do me any good. That said, she seems to feel a lumpectomy is still worth considering.... shrink the tumors, get the cancer under control, remove, etc. That said, I haven't heard from the breast surgeon. I really don't know if she feels the same way. This is just my onc speaking. On one hand I totally agree it's pointless to worry about the breast - the cancer is "out there" and my organs are of bigger concern. But if I can get to NED on my liver (and I PLAN TO....), I feel there's a part of me that truly wants ANY evidence of this GONE which would then mean surgery. Ugh. Decisions. Going off treatment for a month to do it makes me a little nervous.... I obviously have some thinking to do.
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eelder- I totally get what you are saying. I freaked out when they said I might not be able to have my mastectomy . The oncologist I had at that time said they wanted to give me a chance to be cured first. Really, got rid of her. My scans did not show the mets so they let me have the surgery. When I got my implants put in I had them take my ovaries at the same time. Sure enough it was in one of them. MO said if they had known they never would have taken them. I don't agree with that. I have enlarged nodes in my abdomen, around my kidney, and pushing on my ureter that they can't get to to biopsy so more chemo coming up😖. I know you are confused. So sorry you had to join our club. Hugs...0
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eelder - neoadjuvent systemic therapy before surgery has become standard of care based on more than one study showing improved outcomes. Personally, I don't think there is any question that you want to shrink tumors before surgery with systemic therapy as much as possible, regardless of stage.
Trust me, I get the emotional issues, but the data on neoadjuvant therapy prior to surgery is pretty clear.
Stage IV folks have a second issue to consider: whether to remove the primary tumor. Since the horse is out of the barn, getting rid of tumors doesn't really do much for controlling stage IV cancer. Micro-metastasis, which you can't see in scans, seems to drive the spread of metastatic cancer. At least one study showed that removing the primary tumor seemed to make the metastasis more aggressive. However, recently there was a big study of ERPR+ women which showed that removing the primary tumor, even after metastasis, did have some benefit. So there is a question.
I expect some more tumor shrinkage out of my current systemic therapy. But I am heading to Seattle in August to ask the folks at SCCA about this, among other things, so I am ready when the tumor shrinkage seems to have stopped.
I will say that if they tell me there is a possible, small benefit from removing the primary tumor, I probably won't do it. As far as I understand, that is what the current clinical trial data says. I need see a significant, substantive benefit of surgery. I am concerned about the effect of surgery on my overall health and ability to exercise, etc. My strategy is to stay as healthy and strong as possible so I can handle the systemic therapies that are coming on line. My gut is that we'll be controlling stage IV cancers long term with systemic therapies, not by playing whack a mole using surgery and radiation.
(whack a mole metaphor plagiarized from another thread. too funny and so apt)
>Z<
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Z.... thank you for this. You bring up many GOOD points and my husband agrees with you
He doesn't want my health to suffer (or for my cancer to get out of control) just for a surgical operation that might not do anything for my long-term survival. It all makes sense. Now, if there was research out there that showed removing the primary tumor helped, I'd be all for it. Sounds like what's in the breast just doesn't matter. Sigh.... decisions.0 -
I had sx first and they found it was more involved than expected. I understand wanting it out. I had both removed for that reason. While I'm not sorry, there is a price to pay.
I have zero feeling in my chest except for weird stinging sensations. So there's the sexual side of it. Clothes don't fit. With short hair I'm called a boy or sir or... So there's a self image side. It doesn't bother me all the time but every once in awhile it gets to me.
And I have lymphedema. I've gone from a small shirt to a large to accommodate my arm. Compression garments are hot. You worry about every little scratch and scrap.
I chose not to have recon. My daughter had just turned one. I don't want to spend her childhood not being able to hold her. I don't do well with sx and I was afraid of infection.
It's a very personal decision. I wish you well.
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https://community.breastcancer.org/forum/73/topics/833612?page=20#post_4744745
Here's a link to some worthwhile reading if you are considering surgery. At least I found it interesting but I'm not a doctor. Wished I had known before my ovaries were removed. My liver mets showed up afterwards. Coincidence? Don't know. Falls under the "it is what it is".
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Hello everyone, I'm a few pages behind but I wanted to answer a question from awhile back about the ibrance only being used a first line therapy. I had been on letrozole for 2 years, then one year on aromasin, which didn't really work, and now I am on ibrance and faslodex and I'm pretty sure it is working. Markers after one cycle were down one point, and they had been going up about 30 per month before that. I am on my week off of the 2nd so I will be curious to see what the markers are this time. Also someone asked if the hair loss subsides. I was losing hair on the first cycle but now it seems to have stopped. I'm sure it's different for everyone but it's certainly possible to stop losing the hair. Hope everyone is having a great summer!
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Does anyone have a good recipe for homemade magic mouthwash? There seems to be so many combo's on the internet, I'd like to know what others here are using. I'm getting a sore tongue & would like to stop it right away. thanks! cheers, dee
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Dee, my MO's nurse told me to rinse with baking soda and warm water after each meal. 1 tsp. soda to 8ozs of water. You can also add a little salt it if your throat is sore. This works for me if the sores are mild. I have also used OTC glyoxide that the dentist recommended for canker sores and that works if my sores are more than just mild.
Faith
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Artist, it sounds like you and Z and I are reacting in similar ways to our week off the Ibrance, feeling lousy and tired until the last day or so. I started Ibrance again yesterday and also was out with friends until very much past my usual bedtime and today went shopping and still felt good. It's weird how this stuff works. I also am getting the thick mucus on awakening that you and others have talked about. I started the Claritin yesterday too, so maybe that's already heaping the fatigue. I wonder what it is about Claritin that helps fatigue, or maybe it's just a placebo for me.
The end of this cycle is the start of our beach vacation and I've decided to not take the last two Ibrance pills so I can start to feel better and enjoy our time at the beach with the family. I'm also going to wait several more days to start again so I will be off for almost two weeks with my Dr's approval. I'm anxious to see how good I might feel. It's like I don't know what normal is anymore.
MomATT, thanks for the good wishes, you and Dani are always in my thoughts and prayers. Hoping you find some answers soon.
Faith (in the future)
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Faith - good job managing your Ibrance schedule. I am in Austin with my family on vacation and just starting my third week on Ibrance. I would stop the Ibrance if I was having problems but it has been an easy cycle. Taking loratadine (claratin) once a day. Good energy most of the day.
The side effect this cycle is a kind of nausea/shakiness and mild fatigue in the afternoon. But it is not the knock me on my back fatigue that I have had the last two cycles. The improvement does seem to correlate with loratadine for me.
Zills - your story reminds me that surgery is hard both physically and mentally. That's my concern: surgery may weaken my health and mental state with questionable benefit. That holistic/functional health is a key piece of my strategy. A deeply personal decision as you point out.
Dee- I had mouth sores early on, not so much any more. They stopped being significant before I could test various recipes for magic mouthwash. I've heard people on this thread talk about certain side effects becoming milder over time. May this also be true for you.
>Z<
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ladies, I'm on a 10 day sort of vacation over to family in Newburyport MA. Really muggy hot 95 weather. Which brings me to that I am shocked I have very little discomfort. I have not had any Advil etc in 4-5 days. Taking Claritin non drowsy and I think it makes me tired the opposite of you Z. I am positive that the discomfort I have had is the drug combo not the disease. Or just maybe the disease is better! Very busy with grand kids and enjoying each minute. Happy weekend to all.
Hugs Carol
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Z, I agree with your philosophy on the surgery issue. Wait for the systemic Tx to try and work and hold out for new ones for now. Instinctively I feel that going through that kind of trauma would work against my general health condition right now. I want to feel decent as long as possible before considering invasive procedures. I would also need definitive proof of substantial benefit. Especially with some of the SE's Zill's point out. Not to be taken lightly at all. I would have done the same Zill's, with a baby to think about. No recon.....I'm sorry you have this to deal with when you should be having this time to just enjoy your precious baby. However, like you eelder, if my liver showed NED ( and I PLAN on it! :>) I think I would consider a lumpectomy depending on how healthy I feel and if the studies show there is a distinct benefit. I love the whack -a -mole comparison too....
HLB, my hair loss has stopped! yay! Also Dee, I had mild mouth sores for a very short time. They cleared up and never came back.
Faith, this time around I did my first cycle of 100 mg. but it was still elevating my enzymes. I am on my week off right now and the fatigue is not too bad this time but I still get the rapid heartbeat upon exertion and like Z, the shakiness???, usually right at the end of the cycle for like 3-4 days in a row. My Onc doesn't ever seem too concerned but it kind of freaks me out. I am going to get Claritin today for the nose issues and hope it helps with the fatigue as well and does not exacerbate the shakiness/heartbeat issue. It is hard for me to decipher what is "normal" any more too. Hope your beach vacation is relaxing and rejuvenating! Maybe it will help reset that gauge!
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Is there a time frame to be on this? Just curious of the regimen
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Diane the trials have success with women stable for 6 years!!
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Everyone will respond differently but the idea is you're on this until it stops working (progression). Like Carol said the trials have shown a lot of success with some on it for 6 years!!!! And they're still going strong!
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Z and Carol, I'm happy to hear you're both enjoying a vacation with your family, those good times are good for our immune systems. Hug those kids a lot too, that helps our endorphins.
I had a lot of nausea and shakiness the last cycle also. I started playing around with the timing of the letrozole after reading the forums of women just on the AI's and noticing some of them were taking it at night and getting less side effects. I'm now taking it at 8:00pm and so far the last several days no nausea or shakiness. I'm sleeping better too. It may just be because it's the beginning of the cycle but I'm hopeful this will do the trick. Time will tell.
Artist, I'm sorry to hear your enzymes are still being elevated on 100 mg but glad to hear the fatigue is better. Do you think your rapid heartbeat is because of the letrozole? That is one of the side effects. I also have some rapid heartbeats and shortness of breath on exertion, but I have chemo induced cardiomyopathy from the Adriamyacin 25 years ago. I'm on coreg to slow my heartrate and keep my BP under control. Even with that and Benicar, I've had a few episodes of scary rapid heartbeat which I think might be anxiety related. It might be worth talking to a cardiologist to see if by chance your heart isn't pumping as good as it should. I was also worried that the Claritin would make my heartrate crazy too, but so far no problems. Keeping my fingers crossed. Happy to hear your hair loss has stopped. Mine may have slowed a bit but it's still coming out way to much. I'm trying to keep a positive attitude about it and praying it stops soon. I'm grateful I still have more hair than a lot of women my age who aren't on these drugs.
Enjoy the rest of the weekend everyone.
Faith (in the future)
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I started Ibrance on Friday. I felt like I was getting a little sick before I started on it, but sometimes I feel like I am getting sick and I don't, so I just ignored it. Now I am starting to cough and have crud in my chest. The nurse told me to call if I have a fever of 100 or greater. I did have a fever, but I took some tylenol and it went away, so I didn't call. I don't know how long it takes to start lowering white counts. I doubt it would do it in a day? I guess if I still am sick on Monday, I can call them.
I found out this stuff costs $10,000 + per month. So glad for insurance and the copay card!
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